Rant, Vent, and Complain About Your Cholinergic Urticaria Hives Post by: L421 on November 14, 2008, 04:15:42 PM
Just want to say Cholinergic Urticaria is the pits, however having just witnessed my poor dad die of Lung Cancer and my best friends young wife get a diagnosis of incurable liver cancer as well as thousands of poor souls suffering other horrible incurable illnesses,
I just want to say I have had this Cholinergic Urticaria for 2 years on and of and now I feel blessed if its the only infliction I have to deal with.
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Title: Re: Cholinergic Urticaria,Cancer and other horrible diseases Post by: HivesGuy on November 14, 2008, 05:42:59 PM
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Hello L421, First I just want to say that I am terribly sorry to hear about the loss of your father and diagnosis of your friend’s wife. I had an uncle that passed away about a year and a half ago from lung cancer as well. I can totally relate to what you are saying 100%, and I have felt that way so often. Sometimes I hate Cholinergic Urticaria so bad! I get so frustrated having to deal with it, and I feel like I miss out on so many things in life, and I have to plan my whole entire life around it. It is a real pain in the rear, and have prayed so much for this to leave me.
I have even contemplated death, and I have had some really low and depressing moments where I felt like my life was essentially over. Yet at the same time, we should all be thankful that we don’t have an even worse condition. So many people have to deal with far worse conditions. What if we had Parkinson’s disease, or terminal cancer, or any number of terrible conditions that make Cholinergic Urticaria seem like just a minor annoyance in comparison. We should all be thankful that we don’t have something worse. Even though we itch and get stung almost daily, life is still worth living! I still have my ups and happy moments too. Plus, we never know, Cholinergic Urticaria could turn out to one day be a blessing in disguise. What if Cholinergic Urticaria is actually something going on with our immune system that could actually prolong our life in the long run?
What if we only have this for a few years on and off, and then one day it goes away forever and we live and enjoy life into old age? Or what if we would be dying right now if we didn’t have Cholinergic Urticaria, and our bodies are somehow counter-acting some detected problem? Don’t get me wrong, Cholinergic Urticaria sucks. It can really change your life. But I agree with you that we need to focus on the positives, and remember that this may actually be a good thing in the long run (although that is still yet to be seen how long it will affect us, and if we will live into old age). Great post, and thanks for sharing your feelings!
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Title: Rant, Vent, and Complain About Your Cholinergic Urticaria Hives Post by: HivesGuy on January 16, 2009, 05:52:32 PM
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I have noticed something about myself and I was wondering if any of you feel the same way. I tend to think of death quite a bit more since having Cholinergic Urticaria. Questions like: How will I die, When will I die, etc. I guess everyone thinks of death sometimes. But I was thinking back to before I ever got Cholinergic Urticaria, and I hardly ever thought about it. Now, it seems that I think of it almost every day, or at least a few times per week (unless I am extremely busy).
I think perhaps the reason is that I feel so frustrated since I have a physical condition that I can do nothing about. I think the physical pain and itching during a strong attack reminds me I am mortal and that my body will continue to break down over time, and ultimately die. Do any of you think of death more since you have had Cholinergic Urticaria?
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Title: Re: Does Having Cholinergic Urticaria Make You Think of Death More? Post by: billysielu on January 17, 2009, 09:15:28 AM
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I did, for about 10 minutes, then decided it wasn’t worth thinking about 🙂
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Title: Re: Does Having Cholinergic Urticaria Make You Think of Death More? Post by: ww2 on January 17, 2009, 08:03:59 PM
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I feel depressed and frustrated sometimes
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Title: Re: Does Having Cholinergic Urticaria Make You Think of Death More? Post by: dice on January 19, 2009, 05:56:50 AM
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I’ve been going through many difficult issues lately, including the Cholinergic Urticaria but I don’t believe I’ve ever contemplated committing suicide. As billysielu said, it just isn’t worth thinking about. That saying about there always being someone in a worse situation than you are is something that I believe to be true. And whilst I understand you feeling sorry for yourself about your situation – at the end of the day you really shouldn’t let the Cholinergic Urticaria take over your life to this extent, there’s many worse things that can happen to any of us.
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Title: Re: Does Having Cholinergic Urticaria Make You Think of Death More? Post by: HivesGuy on January 19, 2009, 08:51:19 AM
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Quote from: billysielu on January 17, 2009, 09:15:28 AM
I did, for about 10 minutes, then decided it wasn’t worth thinking about 🙂 I totally agree. I always try to make myself stop when I notice that I am thinking about it. It is really a waste of time. But I just wanted to see if any of you found yourselves thinking about it more or not since getting Cholinergic Urticaria. Quote from: ww2 on January 17, 2009, 08:03:59 PM
I feel depressed and frustrated sometimes Me too. Especially after a really bad attack, or when I think about all the things I can’t do without having an attack. But I try to “adjust” my attitude as much as possible. Needless to say, I still get those “down” days every so often. Quote from: dice on January 19, 2009, 05:56:50 AM
I’ve been going through many difficult issues lately, including the Cholinergic Urticaria but I don’t believe I’ve ever contemplated committing suicide. As billysielu said, it just isn’t worth thinking about. That saying about there always being someone in a worse situation than you are is something that I believe to be true. And whilst I understand you feeling sorry for yourself about your situation – at the end of the day you really shouldn’t let the Cholinergic Urticaria take over your life to this extent, there’s many worse things that can happen to any of us. LOL I think you completely misunderstood me. I am not talking about suicide at all lol. I am talking about how I am reminded of my own mortality and sometimes find myself wondering about how old I will be when I die, and how I will die more since developing Cholinergic Urticaria. Like each time I have a reaction it reminds me that my body won’t last forever. I completely agree that there are worse cases out there and medical conditions far more serious than Cholinergic Urticaria. I was just wondering if any of you seem to dwell on your own mortality more since developing Cholinergic Urticaria. I don’t need a straightjacket and padded room…just yet anyways ;D. ——————————————————————————–
Title: Re: Does Having Cholinergic Urticaria Make You Think of Death More? Post by: Klope62 on January 21, 2009, 12:19:37 AM
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Definitely not. That being said, I’m just not that kind of person. I focus on the present, having learned from the past, to make a great future (haha ;p). I don’t dwell on past mistakes, and I don’t worry much about what my future holds. I’m also a little bit of a cynic, I guess. I like my life, I would not want to die, but I feel like death will come whenever it does and ‘oh well’. I don’t ‘fear’ it, but I don’t look forward to it either. As far the hives, I think its relevance doesn’t veer at all. It’s just, not that kind of sickness. If anything, it is just a “will I have this the rest of my life?”, kind of thing.
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Title: Rant, Vent, and Complain About Your Cholinergic Urticaria Hives Post by: Amantis on January 28, 2009, 11:24:37 AM
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So recently my attacks have been getting worse and worse, like 4-6 times a day, hour long outbreaks. It’s really depressing me because there’s no cure AFAIK, and theres nothing I can do to treat the symptoms. Today I was cooking (One of my great passions) and I couldn’t even get near the stove without breaking out I had to go sit outside in the snow on the verge of tears for an hour.
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Title: Re: How to live with this? *RANT* Post by: HivesGuy on January 28, 2009, 12:00:11 PM
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Quote from: Amantis on January 28, 2009, 11:24:37 AM
So recently my attacks have been getting worse and worse, like 4-6 times a day, hour long outbreaks. It’s really depressing me because there’s no cure AFAIK, and theres nothing I can do to treat the symptoms. Today I was cooking (One of my great passions) and I couldn’t even get near the stove without breaking out I had to go sit outside in the snow on the verge of tears for an hour. I completely relate! I know it is hard sometimes to deal with this. I have had this now on and off for about 7 years. So I can tell you that I have had ups and downs. On some days, I feel good. Some days, I feel terrible. You just have to take it one day at a time. Writing sometimes helps me. Sometimes I just sit and vent all of my frustrations to my wife. I have cried too. I mean major breakdowns. It isn’t fun having this. But try to focus on the positives. I know that is easier said than done. But dwell on these things: 1. You probably (according to most research articles) have this your whole life. It could go away one day soon forever. Keep that in mind. 2. It could be worse. Imagine cancer, blindness, deafness, amputations, parkinsons disease, or death. At least we are still functional. It sucks. But it could be worse. 3. Your not alone. We are all in this together. We all feel what you feel. I know I have. Hang in there. Don’t let the hives “win.” Keep a positive attitude. We have to think like this to keep our sanity. Some suggestions to help your hives: 1. You said your reactivity has picked up. Has your diet changed? Have you changed anything at all? It may be worth thinking about. 2. You could always try going to the doc and getting some antihistamines or something to see if it helps at all. It may make the reactions less intense until they back down again. 3. You may want to turn down the heat in your house and wear less clothing. I don’t turn the heat on at all during the winter. So I am always cold. The only time I get hot is if I am asleep and get too warm, or if I start exercising or something. Cooking doesn’t usually do it for me, as I am trying to get warm from the heat of the stove. I hope that helps. I know this sucks. One day it will go away. At least, that is what I keep telling myself. ——————————————————————————–
Title: Re: How to live with this? *RANT* Post by: Amantis on January 28, 2009, 12:30:04 PM
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My diet hasn’t really changed. I still live with my family so turning off heat isn’t an option, they yell at me when I have my window open in my room with the door closed. I’ve asked if I can have an appointment with an allergist to test for dust mite sensitivity, maybe I’ll pick up some anti-allergy meds while there. It didn’t ever used to be this bad, but I think the level of heat that sets this off is lowering because I get outbreaks just sitting in one spot too long now. Is it possible its just getting worse and worse and one day I just won’t wake up. I’ve been taking Vitamin B Complex but it doesn’t really help, if I could leave the house without having an attack I would pick up a moisture wicking shirt, maybe I’ll ask someone to do that for me. Ha, a while ago before I started getting these I was thinking about moving to Iceland when I turned 18….maybe I should do that.
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Title: Re: How to live with this? *RANT* Post by: HivesGuy on January 28, 2009, 01:35:40 PM
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Quote from: Amantis on January 28, 2009, 12:30:04 PM
My diet hasn’t really changed. I still live with my family so turning off heat isn’t an option, they yell at me when I have my window open in my room with the door closed. I’ve asked if I can have an appointment with an allergist to test for dust mite sensitivity, maybe I’ll pick up some anti-allergy meds while there. It didn’t ever used to be this bad, but I think the level of heat that sets this off is lowering because I get outbreaks just sitting in one spot too long now. Is it possible its just getting worse and worse and one day I just won’t wake up. I’ve been taking Vitamin B Complex but it doesn’t really help, if I could leave the house without having an attack I would pick up a moisture wicking shirt, maybe I’ll ask someone to do that for me. Ha, a while ago before I started getting these I was thinking about moving to Iceland when I turned 18….maybe I should do that.
I know all about the family thing. My mom used to keep it like 80 degrees and I couldn’t stand it. But luckily now I pay the bills and control the temp. =). They may prescribe some antihistamines, and they do make some over the counter (zyrtec). They will probably make you drowsy. They don’t cure us or anything (at least no one I have met). But they can help take a bit of the “sting” and itch out of it. They do help some people to manage it a little better.
You could always give it a try if your doctor suggests it. I am trying Vitamin D right now, and so far don’t notice anything either. I will probably quit taking it in a month or so if it doesn’t help. The way I see it, if it doesn’t help, why keep taking it? I wouldn’t say it is going to get worse and worse until one day you won’t wake up. So far it doesn’t seem like this is deadly or anything. And in fact it will probably get better, especially when warmer weather arrives. I have thought about moving to a colder or warmer climate too. But in the end it probably wouldn’t help much. We would still get itchy if we got too warm doing something.
Even in the snow if I start to get hot I can get hives. So what would be the point? Unless you like Iceland lol. But I have talked to lots of people. This condition seems to come and go in spurts. It usually doesn’t stay bad our whole lives, and may disappear alltogether one day. Some people on here have made posts of parents that have had it come and go throughout life. It may just be one of those things we deal with. I guess we all have medical issues we have to deal with in life. Maybe this is just ours??
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Title: Re: How to live with this? *RANT* Post by: Amantis on January 28, 2009, 02:42:43 PM
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Yeah hopefully if I live with this I’ll be spared something like prostate cancer
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Title: Re: How to live with this? *RANT* Post by: Amantis on January 28, 2009, 03:57:53 PM
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OK so apparently I’m not going to an allergist. My mom said she called and told them I had Cholinergic Urticaria, and they said go to a dermatologist and the allergist can’t help me. Even though my mom’s an idiot and I asked her if I could go to get one of those pin prick allergy tests for dust mites she went and did this. (I’ve already been to a dermatologist, as have many of you, we know they can’t do jack as Cholinergic Urticaria has an unknown cause) Yay for my family making everything worse.
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Title: Re: How to live with this? *RANT* Post by: HivesGuy on January 28, 2009, 07:06:08 PM
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Oh man, that is crazy. I remember when I first had Cholinergic Urticaria. It took me forever to convince my mom to schedule ANY kind of doctors appointment. They thought it was in m “head” or that it was “nerves.” lol Anyways, good luck with your appointment if you keep it. Let us know if anything happens or if you find out anything new.
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Title: Re: Does Having Cholinergic Urticaria Make You Think of Death More? Post by: fLaPjAk on January 28, 2009, 10:34:22 PM
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I had to register… i’ve been reading and reading, and finally decided to do it. I guess it was tonight’s breakout after my workout that caused me to finally talk openly about it. I’ll post my story in the other forums later on so for now I’m just going to respond to the question. YES. YES. Since Cholinergic Urticaria I’ve been thinking about death way more than usual (NO, NOT SUICIDE). It has made me realize how truly weak the human body can be. Overall, humans are strong, and history will show that the body can surpass that of normality in duress (to save your life, your child, etc.) But since this Cholinergic Urticaria started happening last summer (08) I always have death on my mind – wondering when my time will come… if its going to be from something instant (i.e. car accident) or slow (i.e. cancer)…
Nonetheless its a creepy feeling – and I never used to think about death … so many things in my life have changed because of Cholinergic Urticaria, but that’s for another post and another story. FOR NOW, ALL OF US KEEP FIGHTING THE GOOD FIGHT. ONE DAY THIS OF A PROBLEM WILL BE SOLVED!!!!!!
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Title: Re: Does Having Cholinergic Urticaria Make You Think of Death More? Post by: HivesGuy on January 29, 2009, 08:35:04 AM
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Hello, Excellent Post & welcome to the forum Flapjak! What you said is EXACTLY what I was talking about! I feel that quite a bit. I find myself thinking about it so much more now since I have Cholinergic Urticaria. When I catch myself I try to clear my mind and not dwell on it as much. But I find my mind automatically considering things I used to not think about at all before Cholinergic Urticaria. As you said, I am not talking about suicide or anything, but in general I tend to think of my own death so much more.
How will I die? When will I die? Will it be slow and painful? Will it be instant, etc. Will I live to be old? I realize that our bodies will just break down one day, and even though we don’t want it to happen, there is absolutely nothing we can do about it. Just like with Cholinergic Urticaria. It isn’t fatal (as far as we know), but it is basically out of our control. Our minds want it to stop, but it doesn’t. We try to take all the “remedies,” but most just don’t help that much. Death will be much the same way. It is a creepy feeling! But I agree, we must continue to fight the good fight, and try to force those thoughts out! Awesome post and once again welcome to the forum!
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Title: Re: How to live with this? *RANT* Post by: HiverNation on January 29, 2009, 04:11:13 PM
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Quote from: Amantis on January 28, 2009, 03:57:53 PM
OK so apparently I’m not going to an allergist. My mom said she called and told them I had Cholinergic Urticaria, and they said go to a dermatologist and the allergist can’t help me. Even though my mom’s an idiot and I asked her if I could go to get one of those pin prick allergy tests for dust mites she went and did this. (I’ve already been to a dermatologist, as have many of you, we know they can’t do jack as Cholinergic Urticaria has an unknown cause) Yay for my family making everything worse. since hives is kind of an idiopathic condition ( meaning no known cause ) and they really dont know enough about it, its possible that you might not find help from these kinds of doctors, but you should still try getting in touch with them because they are a RESOURCE just like this forum is a RESOURCE. sometimes resources are resourceful, other times a resource is a waste.
but one thing im doing is being proactive about my hives by trying different things and keeping a diary/experimental journal, you can find that on this forum easily since i update it daily. what im really trying to say to you is this: dont worry. as long as you’re proactive about something there is hope. when there is no hope left, then you’re probably not being resourceful enough, meaning you will always have options and therefore can always be hopeful. many things can be tried, medications, running daily, etc. I can tell you right off the bat that running daily is straight-up the CURE for hives. but its really really hard to run literally daily
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Title: Re: How to live with this? *RANT* Post by: HivesGuy on January 29, 2009, 05:46:31 PM
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Quote from: HiverNation on January 29, 2009, 04:11:13 PM
many things can be tried, medications, running daily, etc. I can tell you right off the bat that running daily is straight-up the CURE for hives. but its really really hard to run literally daily I agree, it is hard to run or exercise/sweat daily. That is why I am hoping that I can setup a hot room with exercise equipment when I finally get a house (hopefully this summer). I think regular sweating, a healthy diet, and moderate sun exposure may “cure” this the best it can be cured.
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Title: Re: How to live with this? *RANT* Post by: Amantis on January 29, 2009, 06:34:58 PM
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But doesn’t the heat of running make you break out? How do I deal with that I am literally immobile when I break out because its so torturous.
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Title: Re: How to live with this? *RANT* Post by: dice on January 30, 2009, 06:49:21 AM
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I’ve actually considered getting a humidifier (and fan heater) and should I not be able to cope alone, one day take sleeping tablets and hope that I wake up the following day drenched in sweat. I’ve never taken sleeping tablets but of course I do know that it isn’t advisable to take it on a daily basis. The main aim would be to make myself sweat, following that I SHOULD be able to sweat by exercising as often as I can whilst having the humidifier on. What do you think? On a side note has anyone found that rubbing petroleum jelly (e.g. Vaseline) onto your body causes the hives to happen almost instantly?
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Title: Re: How to live with this? *RANT* Post by: HivesGuy on January 31, 2009, 07:51:36 AM
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Quote from: dice on January 30, 2009, 06:49:21 AM
I’ve actually considered getting a humidifier (and fan heater) and should I not be able to cope alone, one day take sleeping tablets and hope that I wake up the following day drenched in sweat. I’ve never taken sleeping tablets but of course I do know that it isn’t advisable to take it on a daily basis. The main aim would be to make myself sweat, following that I SHOULD be able to sweat by exercising as often as I can whilst having the humidifier on. What do you think? On a side note has anyone found that rubbing petroleum jelly (e.g. Vaseline) onto your body causes the hives to happen almost instantly? I too am going to consider trying the heater/humidifier trick probably next year. I am going to first see what happens this summer. If the hives don’t go away, I will probably do some sort of heater/humidifier thing to see if it helps to keep the sweat pores open.
You are right about those sleeping pills being really addictive. I know Tylenol PM is super addictive for most people. Perhaps instead of a sleeping pill, you may want consider a benadryl. Not only is it an over-the-counter antihistamine (which may slightly help a bit with any hives reaction), but it also makes people extremely drowsy. I remember my mom would take 1/2 a benadryl every so often when she couldn’t sleep. But I don’t know, they may be addictive too??
When I was given hydroxyzine (an antihistamine) by my dermatologist, it knocked me out cold in the middle of the day. I hardly ever take naps! The only thing I hate about antihistamines is that they leave me feeling “groggy” the next day. I can’t think very well. About the vaseline, I don’t break out instantly, but it does keep the heat in our skin I think (the hotter we get, the more likely we get a reaction). So that could be why it is making you reactive when you put it on. I used to put olive oil on my skin. But I noticed that it had a similar effect in keeping the body heat in more, so I switched to the off-brand (walmart version) of Jergens lotion. It doesn’t really help with the hives, but it helps with dry skin and evaporates well without keeping my body temp higher.
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Title: Re: How to live with this? *RANT* Post by: Amantis on February 06, 2009, 05:56:35 PM
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Update!: Today i went to the allergist, he prescribed my Zyrtec in the day and some over the counter thing at night because of its drowsiness effects. And just a few minutes ago I noticed myself sweating cause I was really hot and I could barely feel pinpricks on my head and back (it was not on my arms/chest/ upper thighs anymore), but it was really awesome! I forgot what just being “hot” was like! I think this really did take the edge off cause they used to be debilitating, I was in a scratching frenzy/fetal position for like an hour, this is much better!
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Title: Re: How to live with this? *RANT* Post by: HivesGuy on February 06, 2009, 06:27:08 PM
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Oh wow, that is quite a big difference! I have yet to take Zyrtec, but I have a pill or two I have been saving for a day when I would need it really bad. Please keep us updated and let us know if it continues to work well for you, and I am glad it has helped!!
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Title: Re: How to live with this? *RANT* Post by: Amantis on February 07, 2009, 06:53:48 PM
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I don’t know what was up yesterday cause I have broken out today WITH the zyrtec. Maybe yeserday was a fluke or mind over matter
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Title: Re: How to live with this? *RANT* Post by: dice on February 08, 2009, 11:48:54 AM
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I suggest giving it up to two weeks use before concluding that it doesn’t work. I’d be willing to give it longer before concluding that is won’t be a “permanent” solution.
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Title: Re: How to live with this? *RANT* Post by: HivesGuy on February 09, 2009, 04:59:28 PM
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Yeah, maybe it will still help some, and I hope it gives you at least some relief.
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Title: Re: Does Having Cholinergic Urticaria Make You Think of Death More? Post by: tyaa on March 11, 2009, 02:31:59 AM
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well not exactly of death.. i would like to share my experience. it was sep 18 when i was playing soccer with my friends in the ground. as it had rained in the morning so it was pretty damp n some yucky insects were breeding in there. so like i hate those weird creatures i decided that i’ll not go to that area but will surely play. but unfortunately when i was carrying the ball to the goal suddenly i went to that area and as i was wearing skirts may be some insect bit me…though i did not have some quick symptoms but it did start itching. the bottom line was when i returned home and discovered so many hives on my face, neck and stomach..
OH! IT WAS THE FIRST TIME AND I LITERALLY STARTED CRYING! i was worried that my face was looking awful and would continue to look like this. i took an antiallergen but did not anticipate that i have become cholinergic urticarian..it was only when i started getting frequent Cholinergic Urticaria attacks that i came to know that i am allergic to heat… being captain of my school basket ball team i had to leave it..besides i got couple of accolades in athletics too but sports was not an option now..it gives heartache but may be this is what god planned for me…
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Title: Re: Does Having Cholinergic Urticaria Make You Think of Death More? Post by: HivesGuy on March 11, 2009, 08:41:07 AM
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I completely relate Tyaa! I too used to be very athletic. I was always playing basketball, baseball, etc. It is so frustrating that we can’t do the things we used to do without feeling prickly/itching sensations all over our bodies. I just try to have faith that one day we will overcome this. I honestly don’t think this is something we will have to deal with forever. I think we will figure it out, or at least it will go away on its own over time.
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Title: Re: Does Having Cholinergic Urticaria Make You Think of Death More? Post by: StrongerThanHives on April 17, 2009, 03:51:02 PM
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I want Cholinergic Urticaria to ultimately make me a better person. I can sit around and think how nice it would be to die and not have to suffer like this any more… or I can believe that I’ve been given Cholinergic Urticaria because someone up there thought I was strong enough to take it. I had a rough summer right before I got Cholinergic Urticaria. I did some stuff I wish I could have done different. Sometimes I feel like I’m serving repentance for those mistakes. I also know that Cholinergic Urticaria is inevitably debilitating. I feel like I need to gain new skills to work past this disability. I hope Cholinergic Urticaria will make me a stronger person.
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Title: Re: Does Having Cholinergic Urticaria Make You Think of Death More? Post by: HivesGuy on April 17, 2009, 04:17:22 PM
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Quote from: StrongerThanHives on April 17, 2009, 03:51:02 PM
I want Cholinergic Urticaria to ultimately make me a better person. I can sit around and think how nice it would be to die and not have to suffer like this any more… or I can believe that I’ve been given Cholinergic Urticaria because someone up there thought I was strong enough to take it. I had a rough summer right before I got Cholinergic Urticaria. I did some stuff I wish I could have done different. Sometimes I feel like I’m serving repentance for those mistakes.
I also know that Cholinergic Urticaria is inevitably debilitating. I feel like I need to gain new skills to work past this disability. I hope Cholinergic Urticaria will make me a stronger person. I agree about keeping a positive attitude, and we should all strive for that. It is funny you mentioned the repentance/being punished thing.
At first I thought that perhaps I was being punished, or I had done something wrong. Maybe I did (after all, there are certainly a few things I did that summer before I got hives that I would change…). But I also remember the fact that there are innocent people who get crazy diseases or die everyday, through no fault or “sin” of their own. So I think that helps some. And even religious texts themselves (such as the bible), indicate that sometimes bad things happen to good people, and it has nothing to do with any sin or wrongdoing of that person (like in the case of Job in the Bible). But that is an interesting point you brought up!
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Title: Re: Does Having Cholinergic Urticaria Make You Think of Death More? Post by: Charles B. Good on April 23, 2009, 01:11:52 AM
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I have my “off-days” when I actually wish I were dead. Yup, I don’t like this either. I don’t go out in daytime anymore, cause I’m always confronted with people who have perfect skin and then I obsess about it even more… At night, most people are more covered up and I don’t stare at them that much hehe, I sound like a perv! 😮 Funny, I’ve become a vampire. I don’t know why I have this (and KP). I’m not evil and I wasn’t when I was a kid…
On the other hand I’m very smart… on my way to my 3rd degree, basically I want to be self-employed and have many options so I don’t have to deal with my future colleague’s strange looks on their faces ??? and the weird questions they ask… But no one cares about how intelligent you are! Beauty is only skin deep. Anyway, I just hope someone comes up with a cure very very very soon… Godspeed 8)
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Title: Re: Does Having Cholinergic Urticaria Make You Think of Death More? Post by: HivesGuy on April 23, 2009, 07:14:32 AM
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Yeah, I think a lot of us sometimes get down, and feel like vampires avoiding the sun/heat. Beauty is not only skin deep in my opinion. Beauty is a complex thing that involves multiple things (outer appearance, personality, talents, etc.).
There can be a person with a flawless & beautiful appearance, but if they have a terrible personality or no charm, they are not very attractive at all in my opinion. But there can be a very average or below average person, and if they have a very charming personality, incredible talent, or something else…then they can look beautiful. That is why so many average or below average celebrities, entrepreneurs, etc. seem to have no problems in the love department lol.
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Title: Re: Does Having Cholinergic Urticaria Make You Think of Death More? Post by: MoshiMoshi on May 04, 2009, 07:34:17 AM
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Well not really, since im still in school and probably (hopefully) got a normal life ahead of me when this clears up. But i really do let my mind wonder, and yes quite often suicide runs through my head, what life would be like without Cholinergic Urticaria, whether i would get Cholinergic Urticaria attacks in my grave.. when you’re bored you think of anything! But ill never commit suicide,
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Title: Re: Does Having Cholinergic Urticaria Make You Think of Death More? Post by: HivesGuy on May 04, 2009, 11:20:24 AM
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Quote from: MoshiMoshi on May 04, 2009, 07:34:17 AM
Well not really, since im still in school and probably (hopefully) got a normal life ahead of me when this clears up. But i really do let my mind wonder, and yes quite often suicide runs through my head, what life would be like without Cholinergic Urticaria, whether i would get Cholinergic Urticaria attacks in my grave.. when you’re bored you think of anything! But ill never commit suicide, That is good that you don’t think of death too much. I really don’t think about it much lately.
Definitely never commit suicide, as that is never the answer, and I am glad you realize that! I honestly think that we aren’t going to have to deal with this forever, and for many of us, hopefully we will soon get cured.
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Title: Re: Does Having Cholinergic Urticaria Make You Think of Death More? Post by: fumduk on May 07, 2009, 06:57:56 PM
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well it did, I thought ya’ know that death would bring relief but, I am not the kind of person to do that. I love life too much to die now. I have never really thought about death since, I just think about how much the good outweighs the bad.
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Title: Re: How to live with this? *RANT* Post by: Amantis on June 10, 2009, 03:43:01 AM
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Oh a very belated update, after the Zyrtec stopped working my dermatologist prescribed I take hydroxyzine, a more powerful version of Zyrtec, every night before bed. Well that didn’t work that well, but I noticed a slight difference. My mom couldn’t make another appointment for a while so I took matters into my own hands, I don’t recommend self medication/prescribing, but I decided to start taking two hydroxyzine every morning with my other pills. And to this day that’s worked 100% I never feel them at all, some days I forget to take them and I discover definitely still have the hives.
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Title: Re: How to live with this? *RANT* Post by: HivesGuy on June 10, 2009, 09:42:04 AM
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Thanks so much for the update Amantis. I am really glad that you have the hives under control, and that is great news. I definitely think everyone should consider talking to their doctor about safely experimenting with different antihistamine approaches to see if it helps. I think I recall at least one other post where someone said they kept the hives at bay by taking a combo of antihistamines too. So it is definitely something some may want to try (under doc’s orders of course). Thanks again for the awesome update, and I hope your hives stay away for good.
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Title: “I’ve never heard of such a thing before”–Reactions to Cholinergic Urticaria Post by: coscass on June 16, 2009, 12:55:25 PM
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Yeah, well, it’s real. I really hate telling people about my Cholinergic Urticaria, because people tend not to believe me. Most likely due to the fact that I’m a well-known hypochondriac. But I do my research, so I’m not some crazy crackhead running around telling people I have these crazy, outlandish illnesses. It just irritates me. Another reply I got (when I was first researching Cholinergic Urticaria and thought I might instead have AquaU), was “yeah, it’s rare. You don’t have it.” Yet I found a site with THOUSANDS of people from all over the world with Aquagenic Urticaria. I refuse to believe it’s “so rare” only “very-low-estimated-number-here” people have it. I felt crazy forever, trying to explain things to people. “How can you be allergic to water or sweat? Your body is mostly composed of water.” Yeah, I know that. >:( >:(
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Title: Re: “I’ve never heard of such a thing before.” Post by: HivesGuy on June 16, 2009, 01:32:24 PM
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I completely agree with what you said. I think many of the urticarias (water, cholinergic) are often misdiagnosed by doctors, and that leads to skewed data of how many people actually have it. So doctors and so forth tend to think it is so rare, when in reality a much larger population probably has it, and simply doesn’t know the name of the actual disease (or get misdiagnosed by the doctor). On this forum alone, most of us have been given ridiculous diagnosis’ initially such as “dry skin”, “nerves,” or my favorite, “all in our heads.” Doctors are so brilliant and scientific these days, hehe. There are probably a lot of people in the world with some odd form of urticaria (like we have), and it gets misdiagnosed as something completely wrong.
Then the poor person has to go through the stress of figuring out what is wrong with them, while everyone on the outside thinks they are crazy or exaggerating. I also agree about hating to have to explain Cholinergic Urticaria. It is a pain because when we talk about it, it seems like it isn’t a big deal at all. However, it IS A BIG DEAL to all of us who have to feel it and live with it. On the other hand, I can kind of understand why it is hard for others to understand, simply because if I didn’t have this, I would never have known how bad it could feel.
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Title: Re: “I’ve never heard of such a thing before.” Post by: StrongerThanHives on June 19, 2009, 08:19:36 PM
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I know how you feel. I get the same response. I just tell people I’m having an allergy to food or something, when the attack is so strong that I have to take a break from what I’m doing. If I tell them I’m having an allergic reaction to my own sweat because my body is heating up they’ll either A, give me a really weird look, or B, ask me how it works expecting to get a clear answer while I’m trying to mask the fact that I’m covered in sever pain. What I hate even more is that doctors are just as clueless as we are, if not more so… It’s like when you grow up and realize your parent’s aren’t infallible.
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Title: Re: How to live with this? *RANT* Post by: StrongerThanHives on June 19, 2009, 08:29:05 PM
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This is very interesting… What I find most interesting is that 100% difference you experienced with hydroxyzine versus a minimal difference with zyrtec. This 100% difference is what I expected when I started medication… and it turned out to be a 10% difference (with claratin then zyrtec) . I’m taking zyrtec right now (per doctor’s recommendations)… they help a little but not a lot. Could you elaborate on the side of effects of your experince with hydroxyzine? Sleepyness etc
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Title: Re: Does Having Cholinergic Urticaria Make You Think of Death More? Post by: Honkymagoo on June 25, 2009, 06:14:12 PM
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I can definitely related, OP but I wouldn’t related it directly to Cholinergic Urticaria. I’ve been struggling with depression and anxiety for quite some time. I’m sure the condition is making my depression worse, though. I’ve had some really bad spells lately where I just can’t seem to get out of it. Ofttimes I believe my Cholinergic Urticaria is somehow related to my mental health and the stress I go through on a daily basis. I’ve never been in therapy or on any medications for my anxiety and depression but I’m going to be seeing a therapist very soon.
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Title: Re: Does Having Cholinergic Urticaria Make You Think of Death More? Post by: nisperos on August 10, 2009, 04:11:52 PM
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This topic sure got a lot of posts! Wow! I’m a mom and my 21 y/o who is developmentally delayed has chronic hives (but maybe not the heat type). I’m always curious about people’s musings and subjective reactions to things as my daughter is unable to tell me stuff.
Chronic hives can sure make a person feel helpless. Believe me, it’s one thing to feel helpless about something you are dealing with and another to watch it going on in someone you love, like when a spouse or child gets sick (or, since I’m at that “stuck in the middle” age, when your parents are getting old and have chronic problems, like one of mine has Parkinson’s and the other Alzheimer’s)… At any rate, for those of you going through this, I think it really sucks that it’s your excitement or passion (the things which make you heat up) which brings on an attack. It’s the gift of being young when you have dreams and ambitions that you think you can master anything no matter what (are invulnerable).
This hives thing interferes with “normality” and it’s just not right or fair. (Of course, life isn’t fair, but you deserve to have some years of feeling lucky and invincible.) I wonder (and trust your own instincts and judgments, not what I say), if sometimes there’s not an overemphasis on antidepressants by the “head jockeys”. Sure, antidepressants can have their place for some, and for some antidepressants have even helped their hives, but I wonder if for others, something which would take the edge off as needed would be helpful. You know, the mental health people often prefer to start with antidepressants for a lot of reasons, some of them good.
But, even if you found one who would treat for an anxiety disorder or panic first, they’ll want you to be on chronic meds (which may or may not be good). I wonder if anyone has tried using a beta blocker prescribed by their regular treating physician? Beta blockers are kinda cool. They are a heart medication, but are also prescribed as needed for things like stage fright or test or interview anxiety. When not used as a heart medication, they can be taken “as needed” rather than chronically, and are not sedating like Valium class drugs. I wonder if they could be taken in anticipation of something which could be an over-stimulating trigger (along with your usual antihistamine)? (One of the more common beta blockers is propranolol, but there are others.)
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Title: Holy Cow–Sooo frustrated right now about Cholinergic Urticaria Post by: StrongerThanHives on October 11, 2009, 12:37:41 AM
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So it’s getting closer to winter and my symptoms are starting to increase, not nearly as bad as last winter but I’m afraid it’s going to get worse. For a while I was enjoying very minimal symptoms. I’m also frustrated because I’m caught between two logical explanations: 1) blocked sweat pores 2) body releases histamine whenever my body temperature changes I want to believe the first one because the first may have a solution.
It also makes more sense because I definitely have Miliaria Crystalline symptoms, which are concurrent with #1 not necessarily #2. But the doctors diagnosed me with the second explanation. asdjflsjdf;lkjsdf I just want to be able to run again. If I ever get this stuff cured I’m going to go on a very, very, very long run in the middle of nowhere, after hydrating of course, and sweat, and sweat, and sweat, and just feel the sweat evaporating off of my body. Must sound pretty weird to anyone that doesn’t run and have Cholinergic Urticaria, but that’s my dream right now.
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Title: Re: iajdpofjlskdjf Sooo frustrated right now Post by: MoshiMoshi on October 18, 2009, 10:25:24 AM
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Yes, it seems symptoms get worse as winter approaches. One thing ive found out though is if you are in a hot/humid place and you just do something like sprint or lift HEAVY weights to strain your body, you’ll eventually sweat; through the pain though.
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Title: Has Anyone Else w/Cholinergic Urticaria Forgotten Whats It’s Like to Be Hot? Post by: ItchingSux on February 05, 2010, 04:06:53 PM
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Due to the fact that for the most parts peoples Hives are triggered by a sudden increase in heat or exposure to the sun, we have practically associated heat with Hives. I for one have basically forgotten what it’s like to feel “just hot” rather than Hot and Super Itchy. It’s sorta sad too because everytime I start to get hot I immediately start think “oh boy I’m gonna start itching arent I?” and of course sure enough I do. So has anyone else forgotten the feeling of being simply Hot?
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Title: Re: Has Anyone Else Forgotten Whats It’s Like to Be Hot? Post by: HivesGuy on February 05, 2010, 05:29:41 PM
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Yes, I know exactly what you mean. I pray for the day that I can get hot, and sweat, without thinking of hives….
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Title: 2009 isn’t my year 🙁 Post by: miracleman on March 07, 2010, 11:54:20 PM
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So here i am typing away to vent about my hives problem. I don’t even know where to start! haha normally i’m not a pessimist, but these HIVES ARE DRIVING ME CRAZY. I’m a 19 year old college freshman and it really bothers me when i come home everyday from school to deal with this rash while im studying or doing anything! Late ’09 (November) i had a problem where i would lose balance when i turned my head. So i went to the doctor and found i had vertigo, yeah i was pretty bummed, but i took some pills for it and now it seems to have gone away. However, then came finals week (December) and man i had exams almost everyday.The thing that annoyed me was that i was starting to get a rash, a really weird rash. I was getting paranoid because this rash looked like stretch marks! i was googling all these “heat rash” and still i couldn’t find out what i had. I was experimenting with everything, i stayed away from leather (random i know haha) , took benedryl, none of it helped.
I will see a doctor soon, but i keep thinking that he or she might not be able to figure out how to treat the rash I have. I just dont know what to do anymore. I’m really sorry if i sound annoying because i’ve never had a thing like this before. It really makes me sad because i am REALLY looking forward to the summer weather, but i don’t want to end up breaking out once i walk out my door. Anyway, there goes my rant… If you read all of this, I thank you, for listening to my rant 🙂
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Title: Re: 2009 isn’t my year 🙁 Post by: HivesGuy on March 08, 2010, 01:51:46 PM
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Hey miracleman, Excellent post and welcome to the forum! Its funny how you said you aren’t a pessimist, because I am a generally positive guy most of the time. But Cholinergic Urticaria has nearly turned me into one! But I am confident that once it goes away, I will be much happier and positive. I agree that this type of hives is about enough to drive any sane person crazy! That is strange about the vertigo thing, and I guess I am lucky as I have never dealt with that issue. About summer coming up, I am actually getting very optimistic. Today was one of the first really “warm” days we have had in my area for the entire winter season.
I got out, took my shirt off, and worked like crazy digging up some old bushes. I got itchy a few times, but eventually the sweat came and it felt fantastic. I honestly think that my Cholinergic Urticaria is going to go away this summer, due to getting moderate sun exposure, and forcing myself to get out and sweat daily. Plus, I get to enjoy nice A/C when I go shopping (as opposed to breaking out in hives from the cranked up heaters now…). Anyway, thanks again for the great post and welcome!
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Title: Just ranting Post by: kez0605 on March 22, 2010, 04:00:38 AM
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Well I went out for the first time in ages this weekend. I have a 2 year old so don’t get out that often. Met up with some friends and had something to eat and then we walking into town, about a 10 min walk. Could feel that tingle and thought I would take a tablet just in case. Walked into the pub and the heat hit me and 5 mins later breakout in a busy pub. So told OH I am going outside, well it would not go down and got much worse and could feel it not only on my face but all over. This was 9.30pm and I had to go home, completely ruined my night yet again. Luckily my friends were O.K and we just went back to theirs. I felt terrible though as they don’t get many nights out either. Roll on the summer as I hardly ever get any breakouts as I have so had enough.
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Title: Re: Just ranting Post by: HivesGuy on March 22, 2010, 04:45:36 AM
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Hey Kez0605, I am sorry to hear about your disappointing experience. I know exactly how you feel. Getting out is such a challenge sometimes. I find myself constantly altering my activities to avoid attacks. I know you must have been so frustrated when you got home. Cholinergic Urticaria can definitely put up a road block to physical or social activities sometimes. I have dealt with that feeling of frustration and sadness so many times, I don’t even want to count. This is a very hard condition to manage (mentally and physically). I am glad your friends understood, and as hard as it is, just try to stay positive. At least this will probably go away for you soon, so try and put hope in that fact.
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Title: Re: 2009 isn’t my year 🙁 Post by: Snuff on April 02, 2010, 09:39:15 PM
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Idk what a vertigo is but sometimes when i turn my head rlly fast or bounce around alot ill feel and hear a loud crack in the back of my head like right where my nect starts and it will get rlly rlly rlly hot and hurt then it will go away
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Title: Re: 2009 isn’t my year 🙁 Post by: Adamkara on April 04, 2010, 11:43:51 PM
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I wonder how many people had their symptoms first start in the winter months? But anyways miracleman, just dont let it get to you. Keep your head up and try to remain positive. When I break out its awful for like 10 minutes and then I just feel dreadful but I get through it and get through the day. Pretty soon youll start losing track of time. Itll just become another part of life.
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Title: Re: 2009 isn’t my year 🙁 Post by: Snuff on April 05, 2010, 12:57:01 AM
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Mine started in the Winter. October 24th. i know the exact day hehe about 2 in the afternoon. thats the exact time my life changed. until i beat it back to wherever it came from. i surely will. I have everything i need and my familly and fiancee make life way better hehe theyre awesome.
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Title: Cholinergic Urticaria doesnt let you live pleasantly? Share experiences..! Post by: Rogerq23 on April 11, 2010, 03:35:21 PM
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Hi… this is very strange illness that is not unknown but…it is very uncomfortable living with this and trying to not make it notable by the people surrounding the area because if they notices they will think… EW!… or what the hell is that? is that contagious and they get away from us or if you explain that is due to the heat or something like that they will just laugh and say NO WAY!… and look at you as a jerk but the true is that they are the jerk… well… to some people this really destroys them their live… people who love to be outdoor and do so many activities that they have to cut off because of this…
That is terrible… it is like taking away one part of your life!… so sometimes we dont have any remedy than take some medicine that will help us for the next coming up hours but not to cure us… so this thread is to make contact so people can say how the feel… how frustrating it is, and also to share some recommendation that may help some other people and we all can benefit from it to… WE are not ALONE! we are all together…! hopefully one day they will find out a efficient and permanent cure for this painful illness!
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Title: Need Some Help Please Post by: rdalrymple on April 15, 2010, 05:11:45 AM
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So when I was about 16 years old I had hives for almost 2 years then they just went away. The Doc’s could never figure out what caused them and why they went away. They always felt they were stressed related but i was 16 and i dont remnmeber being that stressed out. Anyway i’m now 31 years old and everyting is going well i got a wife and two kids a decent job been working a ton… Last saturday i was working in the yard all day and monday i had a whikced stessful day at work i got home and i had some hives on my arms… the next day on tuesday they were still there so i thought i had poisy ivy…
on wensday they were all gone but i woke up this morning and i had them all over my legs and arms. I’m so bumbed out cause its been so long since ive had these. The only thing ive changed in my diet is i had a kidney stone 3 weeks ago so i stopped driving soda and coffee and also changed my hair gel lol but i switched it back… so i have no idea why there back but i dont want them lol and i cannnot do this another 2 years im truley bummed out. Rich
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Title: Re: Need Some Help Please Post by: Snuff on April 18, 2010, 06:01:01 AM
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Sounds like you have hives.. this forum is for cholinergic urticaria.. maybe you are on the wrong website. just trying to help. good luck
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Title: Sort of scared, depressed about this! Post by: No I Got Hives on August 07, 2010, 09:00:38 PM
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Hey guys, I would love to believe I DON’T have Heat Hives, but the symptoms match pretty darn well. 🙁 I’m a teenager, about to be a senior and sadly, during mid June, I had my first encounter with “heat hives”. Ever since mid June, I have had them occur. I couldn’t get into a work out or excercise without an unbearable itch breaking up on my upper chest, scalp, forehead, upper back. I couldn’t enjoy a hot meal my mom cooks, nor could I eat any food with hot sauce. As soon as I smell the spice from the hot sauce, my scalp would start to itch, soon my neck, then my chest. I could officially say the heat hives have made my life miserable.
I’M JUST A TEENAGER! WHY DOES IT HAPPEN TO ME!?! I have always tolerated high temperatures pretty well, I always took steaming hot showers, ate spicy food as if I was born to, excercised until my shirt was soaking in sweat, but all of a sudden these hives took over my life?! When I had my first few encounters, I thought of it as a simple allergic reaction to something I ate. I’ve never had anything like this, during summers every year, I would go out every day, summer school, parks, movies, stroll the streets. Sadly this year I can’t do much due to being broke. I just want to know what caused or how did I acquire these heat hives and whether or not they will be a chronic issue or not. This summer I have lacked to do much, I chose to stay home, sleep late, wake up late, stay on my bed watching countless movies. I do weight lifting often until heat hives stopped me. I just want to know if this will be a chronic issue, how did I acquire this and how long would it last if it isn’t chronic.
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Title: Re: Sort of scared, depressed about this! Post by: HRC on August 10, 2010, 12:22:38 PM
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Hey There! Your story sounds very similar to mine! i was fine up untill the age of 20ish! and then the hives came and made my life very miserable! it really affected my confidence, i couldnt do presentations at university or feel nervous as the hives would attack! To cut a long story short, my advice is not to try avoiding sweating! This made my hives worse! and it came back stronger the less i sweated! What i do now is exercise everyday! weightlifting is great and if the hives attack just continue! and the hives should go away after a few minutes! it may be a painful few minutes! but the more you do this, the more you will sweat! this minimises the hives! i also take antihistatime – cetreizine hydrochloride once a day! this also seems to help! Let me know how u get on! But make sure you dont get heat exhaustion if it feels to painful then stop! Unfortunately no one knows the causes or why this happens! i guess this is the reason we are all on this website, to come to sort of conclusion! Regards HRC
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Title: Just need to vent some more Post by: wyattroa on September 23, 2010, 11:20:07 AM
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I am at a loss with Cholinergic urticaria. My attacks are so often and so painful that I am losing hope in finding something that will help. My doctor has explained to me that I have a very severe case of it. My outbreaks happen all the time, here are some examples; Walking from my basement to the first floor of my house, walking to the mailbox, getting excited, scared, nervous, anxious, happy, and sad, being in any room that is warm, sleeping at night and becoming warm, and multiple other things. My wife and I have made the decision that I should no longer drive anymore due to severe attacks while driving that almost caused me to be in two accidents. My body was tensing up from the severe stabbing pain that I was unable to hit the brakes. I no longer work and can’t do stuff around the house. I have 10-20 attacks daily, my hands constantly have the burning, stabbing, tingling, and severe itchiness in them. My career as a paramedic is currently over from this and a back injury.
My wife is now taking care of my and tries to help me out as much as possible, this breaks my heart. She is 7 months pregnant with our first child and is taking care of me when I should be doing everything to take care of her. During my attacks we will put 2 fans on me along with ice packs on my neck, wrists, feet, and back. When the ice packs are placed on my body I do not feel the cold from them when having the attack. The attacks get so severe that I get even more worked up by seeing the red dots pop up all over my body and seeing it start to make its way up my arms. My entire life as I know it has been brought to a sudden halt. I can’t do any of the things I was once able to do. My wife’s grandmother passed away on Saturday and I was only able to be in the wake room for 10 minutes at a time and then had to walk away a cool down. I now have a cooling vest which holds 12 ice packs that I wear. It does help to an extent by keeping my core body temp from rising.
I have a baby due in November and can’t even take care of myself now. I am losing it over here. How am I going to be able to hold my child, be in the delivery room when the baby is being born, and care for it. My stress is at it highest point ever and does not help the situation at all. Current medications I have used are clariton, benadryl, gabapentin, Allegra, cyproheptadine, and vitamins. I am running out of options, I have also tried combining these medications into a cocktail and it does not seem to work. What are my other options out there? I need help, this is no way to be living right now. I am not suicidal so please don’t this post the wrong way, I just want to be better for my child. I have heard of using steroids for this, I did not want to of this route with all the possible side effects, but I will do anything and try anything to help get this away. Sorry for the long rambling post.
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Title: Re: Just need to vent some more Post by: HivesGuy on September 23, 2010, 11:46:09 AM
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I hear you loud and clear my friend. Just today, I decided I would try to go to Walmart with my wife. The store was relatively cool, so I was fine while shopping. Then, we get to the checkouts, and guess what? Walmart is having a global meltdown with their credit card machines. We only had a credit card on us, and not enough cash. So as the lady is telling us there is nothing she can do, I am sitting there fighting back a hives attack. As soon as the woman was finished, I just told my wife, “I have to go to the car NOW.” I then broke out all the way to the car, and for a few minutes until the A/C started to cool it down enough. Then, we go to the ATM and try going back since we have enough cash. I walked from the car to the front door, and had to turn back around because I was covered in dots and said to myself, “I am done today.”
My wife had to finish shopping. I am the same way as you right now. I can’t go to my basement due to it being hotter, and I break out in hives. Hives when I check the mail during the day. I have to keep cool. When I am intimate with my wife, I have to have a cold rag beside me and a fan blowing and the room ice cold. Life right now is crap for me too. I basically have no life at all outside my house and the internet. As far as what you can do, I don’t really know. I think the only thing we can do is wait and hold on to that small sliver of hope that it will go away very soon. Medically speaking, this is all I know you could try (and of course, none of these things are ideal or necessarily safe). 1. Corticosteroids–These are pretty serious, but if you got a dose pack or a strong shot, it may knock the hives down for a bit.
I can’t guarantee they will (I recently had a shot and so far nothing…), but it may help. 2. Danazol (anabolic steroid), again, pretty serious. May have to take it a while or even a high dose. It will probably cause lots of side effects and may ruin your health down the road too. 3. High dose anithistamine–high dose of allegra or something may help a bit. That is all I know that you could possibly try until it goes away on its own (or improves).
I wish I had an answer too because my life is crap right now. It is so frustrating, and hasn’t helped being the hottest summer on record. I have decided to stop trying anything new and I just hope that things get better soon with fall time. Usually hives go up and down in intesity over time, so I think surely it has to get better soon. Good luck, and let us know if things get better.
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Title: Re: Just need to vent some more Post by: hieveryone on September 23, 2010, 12:38:15 PM
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Hi, Sorry to hear that story, my case is hard too but no so, this is what has helped me, it may sound not very hopefully but it has lowed my symptoms and they are the kind of things you try till you see they are no the cure, so you stop doing it. If I were you, I would buy a cheap personal running machine and I would gradually begin walking and then running. My method is not very simple but very effective for me (at least I can carry on a little social life in winter). It takes 30 minutes each day, I usually run 4 periods of 3 minutes, after of each I drink a cuarter of a big glass of water (very slowly, this way is a way much, very much, hidratating) and then I walk 5 minutes in the machine till the next period. Thow I always break on hives in this exercise (now less doing more) if you do it progressively you will see the advances very quickly. I also exercise my arms with weights, it helps to break less doing exercise things. Also, I have changed my mentality.
I always remember three concepts: Be calm, positive, and clearly thinking (I used to think very quickly and not with propper sentences with beggining and end, I train my memory a lot too now). This has helped very much too, but more slowly, you have to be very persistant. I only take a half of a antihistamine dose (Before I took 2 and I was a lot worse). I always like to have a plan b running on, so I’ve started to take vitamine d (d3) three days ago, and I don’t take nothing sweet (very helpful) or alcohol.
I’ve spent long times going out only 10 min a day or even less but this changes have made me live again, with an openly admission of my illness, not normal but enjoying very much. Hope you get right soon, and hope medicine finds something soon to alergies and specially the Cholinergic Urticaria. Cheers.
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Title: feeling down today Post by: stacey on October 25, 2010, 10:23:35 PM
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I voluntarily stepped down from my supervisory position at work today. The stress was making my cholinergic urticaria unbearable not to mention that I’ve had 5 anaphylactic episodes since the beginning of June. I was working up to 12+ hours a day, on call 24 hrs a day 7 days a week, plus had to fill in for employees who quit or called in sick which was about every other day. My job deals with a segment of the population who has very poor work ethics.
Employees calling in sick for the most minute reasons and walking off the job or not showing up are the weekly norm. I was supervising almost 60 business accounts and my boss was continually adding new ones but not hiring additonal help to cover the growing business. He was basically trying to grow the business using the same 2 supervisors to handle it all–me and another employee. The girl who worked my postion before I was promoted left after having a nervous breakdown. So, I showed up at the office this morning wearing shorts to show my legs with all of their cholinergic urticaria glory in full force to make a point.
I said either he was going to have to hire additional help or I was going to have to step down from my position or quit. He said he couldn’t hire any additonal help. So I stepped down and took a 100 pay cut per pay period. I feel like I have failed. I thought I could be superwoman and handle it all but I couldn’t. I had a very severe outbreak Friday night and could barely walk it was so painful. I feel like I have wimped out and that a real woman could have handled all the stress. I’m sure I will feel differently in a few days but I feel really bummed out right now! I hope I did the right thing.
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Title: Re: feeling down today Post by: HivesGuy on October 26, 2010, 03:23:49 AM
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Hey stacey, Wow, that definitely sounds frustrating and I am sorry to hear all of that. I know that must have been a very very difficult decision. I think most all of us have to really juggle our lives around our Cholinergic Urticaria, and sadly, that also means careers too. But health is important, and if this job was causing high stress and inducing attacks, then I think you made a great decision. Life is too short to be tortured physically at a job. With that being said, don’t give up, and try not to get bummed out. It sounds like you are an intelligent person and had quite impressive responsibilities at your old job.
I am sure you can find another one with a lot less stress, that may be able to have a cooler environment so you can cope with the hives. Keep your head high and hang in there! And when you said, “I feel like I whimped out, a real woman could have handled the stress.”—Keep in mind that it isn’t whether or not you can handle the stress. Anyone can handle stress. The real question is whether or not the stress is worth your effort. Many times, it simply isn’t. So don’t feel like a whimp for not putting up with BS. Maybe you are meant to do something better with your life anyway. Maybe you are ready for a change. Best of luck and hang in there!
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Title: Re: Has Anyone Else w/Cholinergic Urticaria Forgotten Whats It’s Like to Be Hot? Post by: zkpd on December 01, 2010, 09:25:17 PM
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Whenever I clear my hives by sweating, I’m still paranoid when I get hot. It’s just got me on a leash =X
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Title: I hate my hives but I LOVE MYSELF! Post by: mozartthekat on February 17, 2011, 01:30:29 AM
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I hate hives. Why? I’ll tell you why(wise)! They… 1. Itch 2. Prick my skin 3. Are not attractive 4. Show up unannounced 5. Get in the way of things I want to do 6. Are not fashionably acceptable 7. Receive to much unwanted attention 8. Get upset and attack me when I’m hot 9. Require patience 10. Are not something I’d like to take to school, work, out with friends….or ANYWHERE! I love myself because… 1. I am a healthy person 2. I am F.U.N.:o to be around ;)(well at least from what I have been told) 3. I am beautiful inside…and well, I try work on the outside from time to time 🙂 4. I can show up unannounced within reason and share some laughs ;D with my friends 5. I still can do the things I want to do. In fact, I do more creative things. I don’t always do the same old same old anymore. 6. I am fashionably acceptable.;D I still wear cute outfits, maybe a bit more modest. Haven’t you heard? Modest is hottest! 😀 7. I attract positive attention. I love being happy. 8. My boyfriend thinks I’m hot! 9. I learned the value of patience. 10. I know that I have the power to be Happy and Positive Wherever I Go.
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Title: Re: I hate my hives but I LOVE MYSELF! Post by: HivesGuy on February 17, 2011, 07:34:25 AM
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Way to think of the positives of your life, while not ignoring the sucky hives. I agree, we all should take stock and “count our blessings” when we get the chance. Hives suck, but there are a lot of other GOOD reasons why we still have a purpose on this earth, and how we can all love ourselves. “Hate the hives, love the hives sufferer” lol.
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Title: So why hasn’t anyone done anything about this? Post by: LookMaNoHives on February 27, 2011, 10:30:00 PM
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So today while I was vacuuming my bedroom and having a hives attack (because even the slightest movements can cause me to get hot apparently) I was wondering why we have to live with this wretched disease or whatever you want to call it. Research is being done all the time on other diseases and even menial things like making ketchup green (random example, but there had to be money and research to do that and I was reflecting on my childhood), but why is there nothing really being done about cholinergic urticaria? I’m sure that some things have been done, but most people haven’t even heard of it. I know I had no idea what it was until I got it. My parents didn’t take me seriously until about a month ago (6 months after the symptoms started) when I sent them a picture of my hive covered arm because I walked inside of a heated building and didn’t get my coat off fast enough. Now my mom is concerned and wondering why the doctors aren’t doing anything about it. She is starting from the beginning like “did you try taking benadryl?” and I’m like yes mom, I tried lots of things. And then she wants me to try combining more than one antihistamine, and then I have to remind her that was the reason I have a $240 eye doctor bill for the corneal ulcer I got from trying that. And then she is ready to give up and that is when I’m like “exactly! nothing works and nothing can be done because no one knows what to do!”She thinks I need to call Oprah now and see if she can find me a specialist to cure me. I guess I’m just venting because I feel like no one is doing anything about this. Look at everyone on this forum, this is a ton more people than I even imagined suffering with this garbage, but very few of us have really gotten better. I just wish I could put on my leader hat, and start my own research fund to help us. No one deserves to go through life like this. I can’t even vacuum for pete’s sake. I just feel like I’m missing out on life. You guys are welcome to comment with your ideas! I’d like to hear them 🙂 Maybe sometime we will be on Oprah because she is paying someone to fix us! I guess that means I’m a dreamer… Thanks for reading!
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Title: Re: So why hasn’t anyone done anything about this? Post by: Duper on March 01, 2011, 03:25:06 AM
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Call Oprah. No, really. I never even thought about that as an option, but you really have nothing to lose. We can all relate to what you’re going through, and some publicity for Cholinergic Urticaria so that others can understand how debilitating this condition is wouldn’t be so terrible either.
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Title: Re: Has Anyone Else w/Cholinergic Urticaria Forgotten Whats It’s Like to Be Hot? Post by: ken8lk on March 02, 2011, 06:49:09 PM
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I feel the same. The last time I actually felt hot was one year ago. I miss those days.
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Title: Re: So why hasn’t anyone done anything about this? Post by: mozartthekat on March 04, 2011, 11:49:23 PM
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There is a post on Oprah’s website about cholinergic urticaria. No takers for the story though apparently. In addition, I already tried to contact Dr. Oz about 7 months ago about the situation but no dice.
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Title: Re: So why hasn’t anyone done anything about this? Post by: HivesGuy on March 05, 2011, 06:48:02 AM
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To be honest, this is something I have struggled with. On one hand, I really want to be vocal and put myself out there to raise awareness for cholinergic urticaria. This is not only true for Cholinergic Urticaria, but for my website/business marketing too. I have came close to creating videos and press releases to do this. But then, I also struggle with the side of my personality that is extremely shy and fiercely private. I love my privacy so much, that I really hate letting that go. So I go back and forth with…should I make videos and put myself out there, or should I never give up my privacy… I am the type of guy who (even though I am web savvy), I don’t do facebook/myspace, etc. because I don’t want to give up my privacy. My extended family doesn’t even know about my website(s). For the time being, I have decided to just keep working on the website, build the community up, and then, maybe when we have thousands and thousands of members, we can pool our resources and get some studies, publicity, and so forth. I don’t even have a clue how much a study would cost. I asked one time on Yahoo answers, and people suggested it could be hundreds of thousands or even millions to get a study going (depending on whether or not they had partial funding, or if we would have to fund the whole thing). That is a lot of money, but if we had 10,000 forum members, and a study costs 1 million, then that is only $100 each, which I would gladly pay. Right now I still feel we need far more people with Cholinergic Urticaria, and hopefully in just 1-3 years this is something we can begin discussing on a serious level. That is one thing I hope this website can acheive one day.
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Title: Re: So why hasn’t anyone done anything about this? Post by: AdamM on March 11, 2011, 04:47:34 PM
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Maybe we could work to start a research fund for this condition. This has to be one of the worst conditions to be stuck with and sometimes I wake up in the morning and scream god why me.
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Title: Re: So why hasn’t anyone done anything about this? Post by: JCxING on March 21, 2011, 10:22:50 PM
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We just have to make people aware. Just like people who had diseases like tourette syndrome. It wasn’t well know and people with tourettes wasn’t taken seriously. I think it’s time we were taken seriously because the only people who care about our disease is the people who have it. The people who don’t have it just think its a little tiny itch with a red mark afterwards. WRONG! It can be painful and embarrassing at times. It can lower self-esteem and cause depression. My father is a manager at a television company, well the BBC infact. I’m going to let him read some of the comments on this forum so he is fully aware and see what he can do. Let’s pray something can at least be done.
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Title: Re: So why hasn’t anyone done anything about this? Post by: LookMaNoHives on March 25, 2011, 04:58:31 PM
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Thank you guys for agreeing! It is nice to know that other people think our problem needs to be known. I go to a pharmacy school and I would like to try and start something, but like Hivesguy, I don’t want people to know I have it. It might have to be something I just have to suck up! I did write a letter to Ellen DeGeneres. She is always really giving. Keeping my fingers crossed! Thanks for your support!
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Title: Re: So why hasn’t anyone done anything about this? Post by: Darkhorse on April 08, 2011, 08:15:54 AM
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lol @ oprah ya’ll need to calm down blowing this thing out of proportion it’s has been cured you just need to shell out a good few gold coins also the use of anti-histamines/corticosteroids can suppress it up to 90% in most cases it’s not like the theres a one cure fix all as the condition is not as easy as developing a modified microbe for the flu you could have 9 million other medical conditions which are worse off than this some guy right now in a wheelchair as a result of DMD is sitting there wishing he only has cholinergic urticaria to worry about
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Title: Re: So why hasn’t anyone done anything about this? Post by: nowash on April 09, 2011, 01:32:03 AM
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Well, excuse us for not having a genetic mutation, darkhorse. There’s a million doctors and their bajillion patients working toward and waiting for gene therapy. Cholinergic Urticaria hasn’t been cured, and the omalizumab therapy doesn’t work for each case; want proof? Here: Failure of omalizumab in cholinergic urticaria.
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Title: Re: So why hasn’t anyone done anything about this? Post by: Darkhorse on April 09, 2011, 10:53:34 AM
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Quote from: nowash on April 09, 2011, 01:32:03 AM
Well, excuse us for not having a genetic mutation, darkhorse. There’s a million doctors and their bajillion patients working toward and waiting for gene therapy. Cholinergic Urticaria hasn’t been cured, and the omalizumab therapy doesn’t work for each case; want proof? Here: Failure of omalizumab in cholinergic urticaria.
You are excused! The patient which had used various sedating and nonsedating antihistamines, disodium cromoglycate, ketotifen, leukotriene receptor antagonist, corticosteroids (up to 60 mg/day), dapsone, danazol, doxepin, beta-blocker, photochemotherapy (PUVA) as well as various diets, none of which resulted in a significant reduction in symptoms. The patient began with omalizumab of 300 mg every 2 weeks, after only his second injection the patient had experienced a significant improvement of his symptoms and could cut down his concoction of medication down to only to desloratadine 3 x daily and propranolol once daily.
His condition continued to improve and in week 5 after the start of omalizumab our patient reported to not have experienced any symptoms for an entire week “(his) best week during the past 5 years” In weeks 10 and 20 of treatment with omalizumab they performed physical exercise provocation tests which were completely negative, even under maximal physical strain. In week 11, the patient stopped all concomitant medication. Today, the patient has been free of any symptoms for 22 weeks and he is able to resume all activities, including hot baths and extensive workouts.
This is, to our knowledge, the first report of a successful treatment of cholinergic urticaria which was cured with omalizumab. During this treatment the patient used 1650 mg’s of omalizumab which equated to a cost of $8450 – €5,938 – £5,183 for treatment which resulted in a permanent cure for his 5 year long condition of cholinergic urticaria
Of course treatment doesn’t work 100% for every case, I don’t recall any medical condition which prescribed drugs work 100% all of the time in every case. Medical intervention with any condition does not guarantee success. Doctors don’t cure diseases, scientists and dermatologists which devote there life to help people with conditions such as Cholinergic Urticaria are the people which will fix this condition indefinitely. I’m sure they have donation pages that could do with some funding feel free to pitch in if you want them to hurry on, while you wait here. So interested? Feel free to study clinical dermatology for a few years and figure out how hard it is yourself. >There’s a million doctors and their bajillion patients working toward and waiting for gene therapy. There’s also a million astronauts and a bajillion people working toward and waiting for holidays on mars. Unfortunately wishing and wanting doesn’t make it so!
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Title: Re: So why hasn’t anyone done anything about this? Post by: LookMaNoHives on April 09, 2011, 05:28:07 PM
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Darkhorse, I find your comments very rude and pedantic to be honest. Survey 1000 people and see who many even know what cholinergic urticaria even is. I’m sure most won’t even know what urticaria is or how to even pronounce it. My main point is that it is hard to find new therapies for people if most people (including doctors) don’t even know what it is. I also understand that some therapies work better for others but can’t work for everyone. That is one of my points. There are so many other ways to try and fight this, but without awareness, new therapies can’t be produced and tested on someone like us. I am a pharmacy student and I just met a pharmacy graduate Thursday who has been in drug development for over 30 years.
She spoke about one drug she helped to create which was a new form of cetirizine (similar to ZYRTEC AND XYZAL) that had phenomenal results. The only reason the FDA denied it was because it was a BID (twice daily) medication and the marketing department said no one wants to take an antihistamine twice a day. What if this medication worked on Cholinergic Urticaria? I’ve been put on an antihistamine that I had to take 4 times a day. 2 times a day would be a godsend. This is purely hypothetical, but what if Cholinergic Urticaria was a bigger deal, and instead of only testing it on common allergies, they tried it for Cholinergic Urticaria?
I can’t think of any medications that specifically treat Cholinergic Urticaria. Many antihistamines list urticaria, but it isn’t the same. The etiology and exact mechanism are hardly even known. I admit that some can be figured out such as ones caused by diet, but many people go the entire course of Cholinergic Urticaria (weeks-life) without a definite answer. This gives a pretty good indicator of how far it has come in the research realm. I’m not saying that every disease or disorder has a specific etiology because I know many don’t. However, I feel that since this isn’t always a life long thing our quality of life could be greatly increased and that is one of the goals of a health professional. The whole IgE therapy is fine and dandy, but as mentioned before it is very expensive, and can even be dangerous.
It is also FDA approved to treat severe asthma, not Cholinergic Urticaria. Maybe if someone would actually look at our problem specifically, our success rate would be a little higher and in my opinion, even helping one more person that would not have been helped otherwise, is worth it to me. I’m not naive, I am aware it is a business world and it can’t work that way, but if the Obama administration is still working on legalizing drug importation/reimportation from other countries, we can say goodbye to any R&D for this and I hope you enjoy all the soon to be out-of-date drugs because they are all we are going to have. So if that whole thing is going down, this could be our last chance. Lastly, I don’t appreciate your sarcastic comments. I don’t like to be rude but you need to treat other people with more respect.
This post is under venting or talking about your Cholinergic Urticaria. Maybe this is all wishing and will never happen, but what business do you have telling everyone that they are “blowing this thing out of proportion”? In response to your comment “some guy right now in a wheelchair as a result of DMD is sitting there wishing he only has cholinergic urticaria to worry about” is incredibly unlikely since the majority of people who actually know what cholinergic uriticaria is, are the ones who suffer from it. Even though there are “9 million other medical conditions worse than this,” why are we funding viagra medication and extra expensive glaucoma medication to grow longer, thicker eyelashes when there are people like us who could benefit more from the research and development money going to a real cause?
This does not even have to be for cholinergic urticaria; it could be for your friend in the wheelchair. And just to reiterate my last point in response to your distasteful post, there are quite a few medical disorders(I’m not going to be as bold to say 9 million) that I would rather have than cholinergic urticaria. At least there could be a higher possibility of getting cured and maybe I wouldn’t be told I’m “blowing this thing out of proportion” (as you so eloquently put it), if maybe, I don’t know, there was some awareness about it, which was my entire point. Thanks for all of your negativity, but you can take it somewhere else. Thanks.
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Title: Re: So why hasn’t anyone done anything about this? Post by: nowash on April 09, 2011, 08:10:45 PM
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Quote
Of course treatment doesn’t work 100% for every case Thanks for agreeing with me. Quote
I’m sure they have donation pages Oh yeah? Since your SOOOO sure, link me to one specifically for cholinergic urticaria, otherwise fuckoff. I’m not donating to a general dermatology clinic for another disease to be cured while mine gets shunted. Quote
Feel free to study clinical dermatology I am, and it isn’t hard. You don’t need any professional training to understand this stuff, just time.
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Title: Re: So why hasn’t anyone done anything about this? Post by: Darkhorse on April 10, 2011, 04:14:11 PM
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Quote from: LookMaNoHives on April 09, 2011, 05:28:07 PM
Darkhorse, I find your comments very rude and pedantic to be honest. Survey 1000 people and see who many even know what cholinergic urticaria even is. I’m sure most won’t even know what urticaria is or how to even pronounce it. My main point is that it is hard to find new therapies for people if most people (including doctors) don’t even know what it is. I also understand that some therapies work better for others but can’t work for everyone. That is one of my points.
There are so many other ways to try and fight this, but without awareness, new therapies can’t be produced and tested on someone like us. Your entitled to your opinion! I am a pharmacy student and I just met a pharmacy graduate Thursday who has been in drug development for over 30 years. She spoke about one drug she helped to create which was a new form of cetirizine (similar to ZYRTEC AND XYZAL) that had phenomenal results. The only reason the FDA denied it was because it was a BID (twice daily) medication and the marketing department said no one wants to take an antihistamine twice a day. What if this medication worked on Cholinergic Urticaria?
I’ve been put on an antihistamine that I had to take 4 times a day. 2 times a day would be a godsend. This is purely hypothetical, but what if Cholinergic Urticaria was a bigger deal, and instead of only testing it on common allergies, they tried it for Cholinergic Urticaria? I can’t think of any medications that specifically treat Cholinergic Urticaria. Many antihistamines list urticaria, but it isn’t the same. So this drug never even left the lab? I find it hard to believe the drug failed to pass clinical testing because it had to be administered twice a day. Was the new drug given an IUPAC name? The etiology and exact mechanism are hardly even known. I admit that some can be figured out such as ones caused by diet, but many people go the entire course of Cholinergic Urticaria (weeks-life) without a definite answer. This gives a pretty good indicator of how far it has come in the research realm. I’m not saying that every disease or disorder has a specific etiology because I know many don’t. However, I feel that since this isn’t always a life long thing our quality of life could be greatly increased and that is one of the goals of a health professional. The whole IgE therapy is fine and dandy, but as mentioned before it is very expensive, and can even be dangerous. It is also FDA approved to treat severe asthma, not Cholinergic Urticaria. Maybe if someone would actually look at our problem specifically, our success rate would be a little higher and in my opinion, even helping one more person that would not have been helped otherwise, is worth it to me.
I’m not naive, I am aware it is a business world and it can’t work that way, but if the Obama administration is still working on legalizing drug importation/reimportation from other countries, we can say goodbye to any R&D for this and I hope you enjoy all the soon to be out-of-date drugs because they are all we are going to have. So if that whole thing is going down, this could be our last chance. How many medications were produced and only ever used for the specific purpose it was developed for? Very few I would imagine, just because the medical condition is not labeled under direct indications it does not imply the medication can not have off-label uses! If you feel like waiting 50 years until enough studies have been done into anti-ige therapy to prove it’s effectiveness, and then contemplating it’s use.
If thats the case then I hope for your sake that you don’t die waiting on this long lasting magic pill to be invented any faster than anti-ige therapy will be proven effective indefinitely. You have to weigh up the risk to benefit ratio and decide for yourself do I want to try anti-ige therapy or or take the decision to wait for longer and complain that nobody is doing anything for us because your not willing to take the risk. Lastly, I don’t appreciate your sarcastic comments. I don’t like to be rude but you need to treat other people with more respect. This post is under venting or talking about your Cholinergic Urticaria.
Maybe this is all wishing and will never happen, but what business do you have telling everyone that they are “blowing this thing out of proportion”? In response to your comment “some guy right now in a wheelchair as a result of DMD is sitting there wishing he only has cholinergic urticaria to worry about” is incredibly unlikely since the majority of people who actually know what cholinergic uriticaria is, are the ones who suffer from it.
Even though there are “9 million other medical conditions worse than this,” why are we funding viagra medication and extra expensive glaucoma medication to grow longer, thicker eyelashes when there are people like us who could benefit more from the research and development money going to a real cause? This does not even have to be for cholinergic urticaria; it could be for your friend in the wheelchair. And just to reiterate my last point in response to your distasteful post, there are quite a few medical disorders(I’m not going to be as bold to say 9 million) that I would rather have than cholinergic urticaria. At least there could be a higher possibility of getting cured and maybe I wouldn’t be told I’m “blowing this thing out of proportion” (as you so eloquently put it), if maybe, I don’t know, there was some awareness about it, which was my entire point. Thanks for all of your negativity, but you can take it somewhere else. Thanks.
Hypocritical much? This is the “Vent or Talk About Your Cholinergic Urticaria Hives” section, but if my opinion does not fall onto your pillow softly and you choose to find offence in it that’s your problem not mine. I agree! no doubt a lot of research does go into certain drugs as a result of profits to be had Would you want to be the guy who cures cancer or the guy who cures Cholinergic Urticaria? That’s the unfortunate reality!
Quote from: nowash on April 09, 2011, 08:10:45 PM
Quote
Of course treatment doesn’t work 100% for every case for every medical condition Quote
Thanks for agreeing with me. It was a factual statement based on common sense! The sky is blue! “Thanks for agreeing with me!” *slow clap* Quote
I’m sure they have donation pages Quote
Oh yeah? Since your SOOOO sure, link me to one specifically for cholinergic urticaria, otherwise fuckoff. I’m not donating to a general dermatology clinic for another disease to be cured while mine gets shunted. Play nice now! When I said page(s) you know I was referring to dermatology research as a whole! Obviously there is a site dedicated specifically to cholinergic urticaria where there is a guy waiting right now, on some donations so he can get off the chair and start researching…. common knowledge right? Quote
Feel free to study clinical dermatology Quote
I am, and it isn’t hard. You don’t need any professional training to understand this stuff, just time. More power to you! I’m looking forward to the day I log on and see you post a thread entitled “I have cured Cholinergic Urticaria!”
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Title: CURSE YOU !!! Stupid hives >:( — My story Post by: Maryam99 on April 22, 2011, 09:17:51 PM
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Hi everyone. I love this forum. Been reading it for the last 3 hours lol. Just thought I’d share my story. Maybe someone can PM me some tips on things I can try for my particular situation. Never had hives or any allergies that I knew off for most of my life. When I was 22 (4 years ago), I transferred from a university in Toronto and moved to one in Ottawa Canada. I was short on money so for the first time in my life I moved into what might be called “dodgy” living quarters.
It was at the YMCA where they rented tiny rooms with a bed and desk for $250 a month. The bathrooms and kitchen were a single communal one shared by about 15 people on the floor. Within about 3 months, I got my first outbreak of heat hives. I was riding my bicycle one cold winter evening to take an exam. I was kind of late so I was peddling furiously. When I arrived, I was not particularly itchy. However within about 10 minutes of sitting in the stuffy warm exam hall, felt that soon to become familiar prickly tingly sensation on my forehead, face and neck. I started itching a bit, but did not realize the full extent of it until the exam invigilator asked me if I was ok.
I went to the washroom and stared at something horrendous in the bathroom mirror ;D – I’ve had the condition for about 4 years now and its not showing any signs of going away. – I’ve tried finding a food based culprit but have been unable to find anything conclusive. – I left the YMCA apartment a few months later, but the condition did not stop. – Strangely, I find that the condition is definitely worse in the winter months than it is in the summer. – When I leave Ottawa and visit my parents home in Toronto I notice an immediate improvement. However, this improvement is short-lived, and within a few weeks of staying at their place – My old hives returns in full force. -I’ve noticed a short-term temporary relief when I perform a deluxe cleaning, where I wash all of my sheets, blankets, towels and clothes.
However within a few days of the cleaning the symptoms return. This is particularly true with regards to my night-time itching. Sometimes the I get the hives break-outs in the middle of the night due to the warmth of my bed. It gets so bad that it will often interrupt my sleep several times a night, with me needing to go and change my shirt and open a window. There is a definitely something going on in terms of how recently washed or clean my beddings and clothes are.
– Although I do get the hives when I exercise or take a hot shower, it is not always the case. The hives in those situations is usually mild and its at such a point that psychologically I do not fear exercising because I know the hives won’t be that bad. All in all, I believe it had something to do with my residence at the YMCA location. There was something unhygienic about that room that triggered my hives. Perhaps some bacteria/virus I got there. Perhaps I got such a heavy dose of dustmite/bedbug/other-critter when living there that it caused my body to develop an immune response to it. I suffer among you !!!!!!!!!!!! ;D
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Title: Re: CURSE YOU !!! Stupid hives >:( — My story Post by: Maryam99 on April 22, 2011, 10:43:26 PM
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– And also I wanted to say that short-term stress definitely is a huge factor. Long term stress like life-events does not seem to affect me much. But things like getting stressed out due to a confrontational argument or being in *blush-inducing situations* will start my hives without fail.
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Title: Re: CURSE YOU !!! Stupid hives >:( — My story Post by: Darkhorse on April 23, 2011, 03:14:40 PM
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WELCOME TO HELL!!!!!! j/k sure sounds like Cholinergic Urticaria try a first gen oral anti-histamine good luck… – DH
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Title: Re: CURSE YOU !!! Stupid hives >:( — My story Post by: HivesGuy on April 24, 2011, 04:40:28 AM
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Hey Maryam99, Thanks for the great post and welcome to the forum. I can certainly relate to your experiences, and I know how frustrating it is dealing with this. I am glad you enjoy the site and hopefully you can find some of the posts useful. Reading over your experience, there are just a couple things I would mention: 1. Dust mite covers–you can buy dustmite/hypoallergenic covers for your pillows, mattress, etc. If you haven’t already got them, then I would recommend you get some when you can afford it. I would recommend something plastic (but stay away from the Vinyl ones as they stink!). I got some that were a polypropelyne mix. Also, I would definitely wash your sheets at least weekly, or maybe more since that seems to help. 2. I have issues of getting hot at night too, and a few others here do as well.
The issue with me is that I have to have a blanket on me, but this in turn makes me hot. So what I have done is put a very thin sheet on me, but I have my thicker blanket close by if I get too cold. Usually I survive with the sheet for half the night, and when I get cold, I reach for the thicker blanket. This works out well because if I go straight to a heavy blanket when I first go to bed, I usually get too hot. 3. Antihistamins, such as Allegra or Zyrtec, can be beneficial in some cases. It sounds to me that you probably have a mild to moderate case of Cholinergic Urticaria (since you can exercise without too much pain), so antihistamines may not be needed in all cases. But if you ever find yourself in a situation where you need to remove hives symptoms as much as possible, it may be something to try (talk to a doctor first).
I have SEVERE Cholinergic Urticaria at the moment, and even so, antihistamines do help on the days when I need to do something strenuous. 4. If you can exercise safely (no swelling/passing out), and you do not get a severe hives reaction, then I would try to continue doing this for health reasons. Many people here are able to minimize their symptoms by regular exercise. Just be safe and I would stop if you ever start swelling or feeling too faint. It may be a good idea to have a workout partner too just in case. Thanks again and welcome to the forum!
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Title: any one feel like they took life for granted? Post by: Ray on June 29, 2011, 05:06:07 PM
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Does any one diagnosed with Urticaria feel like they’ve took life for granted before developing this? I do, I feel like I really never appreciated life like I should have, I mean just looking back at the things I was able to do, participate In physical activities, walk around freely or going In public without the fear of needles and stinging sensations all over your body, I forgot how It feels to be hot.
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Title: My worst terrible experience with Cholinergic Urticaria!!! Post by: LuisAguilar on July 01, 2011, 02:37:59 PM
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Well to begin my story, I live in Arizona so you can feel the hot sun and humid air all over your body once you go outside. Okay so it all started yesterday it was going to be the first time i was going out since about a month and a half.I was gong to my cousins house it was night time so I thought by just soaking my head and shirt with water i was going to be able to make it to their house which was a few minutes away, but i didn’t know that their a/c didn’t work. So when i went outside i felt a prickly itchy feeling here and their and i said to myself “ill be fine, i’ve been through worse”(I WAS WRONG!!!).
Then once i got in their car i started getting more stings all over my body. As they were driving they had the windows down (a/c didnt work) so the hot, humid air was blowing through my whole face and upper body that i got even more pain and i started using my shirt to wet my whole body but in 3 min. it was almost dry. So for the rest of the way i couldn’t even talk or even focus because of the pain and it was a 15 min. drive. It was so painful that i nearly felt i was going to faint and die because of the excruciating pain that i was feeling.
After we arrived home i ran to their house and they opened the door quickly because they knew something was wrong with me, once they opened the door i ran to their restroom and jumped in the shower and turned it on as cold as it could be(at this point i didnt care if i was being rude). After i finally cooled down i explained everything and told them about my hives, they were shocked, that they just kept asking me questions about it. But, all in all, the lesson that i learned is that, wherever im going from now on, im taking an extra wet shirt and a little plastic bag of ice so i can cool down.
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Title: Re: So why hasn’t anyone done anything about this? Post by: HivesForDayz on July 25, 2011, 11:28:15 PM
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Darkhorse why would you be against the idea of exposing chronic urticaria? It would be a good idea for more people to learn about it, so that their can be an increased awareness of the disease. I feel like i have tried everything under the sun to ease my hives, but nothings has cured them. Antihistamines help but not even that much it sucks. I think more needs to be done in the research of Chronic Urticaria. Apart of me feels like the lack of research is due to the amount of money they probably make from their antihistamines. I chomp down 4 25mg hydroxzines a day with a zyrtec, work out, and still feel uncomfortable in my own skin. Now thats just messed more research needs to be down, and I’m sure most of us agree!
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Title: Thinking of suicide to help Urticaria patients Post by: Ray on July 29, 2011, 03:07:05 PM
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So I’m getting to the point where I’m just starting to not care about life a anymore, every day just complete pain and chaos with this crap, and every day my dad Is bugging and hackling me to go out In public, I keep telling him I can’t but he just won’t stop, just yesterday he’s telling me that I should go to the bears training camp practice on Sunday and stand out In the heat, once again I keep telling him It’s not possible, but this dude just won’t stop bothering me.
I’m taking all kinds of anti histamines and some other stuff too but still nothing Is working, I was trying to work out but lately their has been a heat wave where I live so I can’t do that. I’m starting to think Doctors don’t really know much about this condition otherwise their would be some kind of medicine to manage It, so basically I don’t think nothing will be done until something drastically happen, so I’m thinking about comitting suicide and writing a note to explain my reasons to get notoriety for this condition. I’m not being selfish I’m just tirec of going through this and tired of watchings others go through thiks as well.
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Title: Re: Thinking of suicide to help Urticaria patients Post by: HivesGuy on July 29, 2011, 03:50:18 PM
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No Ray, please don’t do that. And if you need to talk to someone, I’ll chat with you, or you can contact a professional for help. I’ve been where you are. It gets better. If the antihistamines aren’t working, then its time to try something new. Don’t give up. The bottom line is that I have removed nearly all inflammatory causing sources in my life (environmental allergies, food allergies, and visceral fat). As of right now, I am doing a lot of experimentation on an “allergy elimination diet.”
I am only eating white rice, quinoa (or millet) as my grains (flavored with maple syrup for sweetness), salmon & chicken (no seasonings), and brocolli and carrots. I am avoiding all other foods so that I can re-introduce them one at a time. I really think a delayed-onset food allergy can make Cholinergic Urticaria worse, and I think that was the biggest reason my hives have cleared. It took about 2-3 weeks, and it is frustrating. But my hives are 100% gone. Just 3 months or so ago I was in your shoes. Originally I thought the visceral fat could have been the biggest source. I do think it made it worse, but I think that delayed food allergies specifically was the bigger factor. Hang in there brother.
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Title: Re: Thinking of suicide to help Urticaria patients Post by: rashional on July 30, 2011, 09:33:39 AM
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Hey Ray. Don’t do anything drastic. We’ve all felt like crap about this and im sure we’ve all had some very dark days. This crap will get better. I promise you that. I’ve had mine for about 11 years. I think most people recover long before that! And in spite of this things have improved drastically. I used to get the rash from temperature changes (internal or external), from nervousness, from walking, from being in a shop or in a queue.
This happened a lot. And the only ting of comfort was being alone in my room. Once in town I stood in a phonebox and pretended to be on the phone for half an hour until it cleared up a little. Now i can do most of these things without any rash. The only thing that really brings it on is if i’ve had too much processed sugar the day before, im hungover and my body temp rises too high, or i do strenuous aerobic exercise. I can even go to the gym and hit weights without any serious breakout.
oh and haven’t used anti-histamines in years. Many years. you got to experiment and be patient. you are probably at the peak of your urticaria. It will get better. If its heat that brings it on then you need to get used to the heat again. Put the heating on in your room. Turn it up progressively hotter every few days or so while you get used to it. Your body can adapt. Same with exercise. Do a little and progressively do more and more. You will notice your tolerance before breakout will also improve. Look at your diet too. Try a paleolithic diet for a while. I have a hunch that its the processed foods in all its forms that are systematically contributing to fucking up our bodies. Report back. Lets make a deal. Dont commit suicide or plan for suicide until you have exhausted all your options thoroughly. And i mean thoroughly, giving enough time. Dont go for one walk around the block then give up! 🙂
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Title: Can’t keep a job or find one…venting on my struggle with hives Post by: HivesForDayz on September 08, 2011, 01:16:45 AM
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So today i’m having a bad day my hives are bugging out and I can’t even clean my room. I’ve been trying to get a job but no luck so far and every time it’s always the same. I get a job but at work I have an attack and need to rest or go to the bathroom. My bosses think im lazy or just messing around but they don’t know what i’m going through. I never tell my employers i have chronic hives because I feel they won’t hire me. I’ve been fired from all my jobs its really making depressed and stressed that I can’t get past probation. I feel like such a failure like I should be doing more. I feel like a bum my mom and dad are always pressuring me to get a job I want to make them happy, and i want to feel like i can do it. But it’s always the same. How have you guys managed to keep your jobs and what’s a good job field for someone suffering from hives.
I have been getting down lately im 20 and i’ve had Cholinergic Urticaria for 7 years. I just want to enjoy life like normal people. I don’t feel healthy. I wake up tired and my energy gets zapped by the hives. I feel like hives have really messed up my emotions as I am pretty much a brick wall. It’s also over the years made me a negative think and more introverted. I can’t hold a relationship either… I feel like im cursed and my life is falling apart. If I somehow get enough money absolutely going to do that ige therapy.
Please help me get through this. I really need someone to talk too…
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Title: Re: Can’t keep a job or find one…venting on my struggle with hives Post by: HivesGuy on September 08, 2011, 06:05:30 AM
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Relax, you’re gonna make it my friend. I’ve been there, and I have made it out okay, and so will you. Here’s my advice: About Jobs: First let me say this: Are you sure you really want a job? Because a job is the last thing I’d ever want. I quit nearly every job I’ve ever had within a few months to a year. I’ve worked as a retail clerk, cashier, bagger, telemarketer, restaurant host, maintenance man, and even a bouncer for a short time. I hated every one with a passion and I was always miserable. I didn’t find true happiness until I started to make my own money, and I forgot about trying to have a “job.” For tips on making your own money, see: Making Money with Cholinergic Urticaria
If you aren’t interested in making your own money, then there are plenty of jobs that you could probably do well. You could work in some telemarketing type job, a desk job, a writer/journalist, computer guy, bookkeeper, etc. Just use your imagination and think of jobs that you may be interested in doing. Also, I can’t remember if you have ever posted in the “what’s your personality type” section before on this forum, but I would highly recommend you take one of those personality tests online for free.
They will help you to identify things you may naturally be interested in doing. They have helped me to identify my strengths and weaknesses, and that has actually helped me a lot. Suddenly I understood why I would get so bored doing things that weren’t my natural strengths. About Being Frustrated with Life Again, I have felt the same way as you at times. I think a lot of people do at your age. Your 20’s are really about finding who you are, and what you want to do with your life. So don’t be so hard on yourself–we all go through that. In fact, I am really glad I went through that looking back, because it helped me learn who I don’t want to be. Sometimes we have to be broken down before we can be built up. I started out in my 20’s with no career direction, broke, with hives, and an atheist.
I am leaving my 20’s now with God, a successful business, and hives free, and with a strong will, direction and plans in my life, and I am much more at peace. I would continue working hard on trying to resolve your hives or get them under control. That will definitely make you feel a lot better right of the bat. You can work on relationships and so forth over time. Find you a spouse–that is all you need. My wife totallly fulfills me in the relationship department, but then again I am introverted and really have a low need for a lot of relationships. My family fills the other voids, and they are my “friends.”
I don’t have time to make other friends besides them in all honesty, because I am busy 24/7. I do have some web “friends” though. I hope that helps. Hang in there. I think you will get your hives under control, and your life will be better. Remember that old quote: “You can do anything better with a positive attitude than with a negative attitude.” I repeat that to myself when I start to feel down, bitter, or frustrated.
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Title: Re: Can’t keep a job or find one…venting on my struggle with hives Post by: HivesForDayz on September 08, 2011, 10:49:15 AM
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Haha thanks hivesguy your words put a smile on my face. Believe if I could sleep to 2:00pm everyday and make music than i’d be a happy man lol. I appreciate what you do here. I need to get out of this hole…this hive crap is eating away at my soul. I am atheist but I once truly believed in God and now I just don’t know. I just recently joined an agency and now all these jobs I can get are labour jobs.
But I’m tired of grinding it out in hell I need something i can actually be comfortable and happy with. I plan on making my own money through producing and recording music at home and right now it’s going good but slow. The worst part of all this is my living arrangements my parent’s are split and I don’t have a close relationship with either of them. As soon as they split both of them hopped into relationships and it all happened so fast. Me and my mom’s boyfriend don’t like each other and he moved in which brought up my stress level. I moved in with my dad but he isn’t the easiest person to live with.
I want to move but I don’t have any money and I can’t get a full time job…so it’s just added stress. I want to be able to support myself…I’m going to check that working with chronic hives article right now. Thanks again hivesguy 🙂
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Title: Re: Thinking of suicide to help Urticaria patients Post by: baseball1288 on October 07, 2011, 07:28:31 PM
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Dont do it there are more people just like you.
my parents are the same way they dont give a crap.
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Title: Re: Thinking of suicide to help Urticaria patients Post by: itchyguy on October 09, 2011, 11:54:03 PM
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I was being scouted by division one baseball teams in my freshman year of high school, i had dreams of going to a D1 school and maybe on to the minors. My college tuition would’ve been payed for. Then mid-way into my freshman year of high school i develop cold urticaria. I couldn’t be outside for more then 5 minutes with exposed skin. On top of this i already had asthma which made playing competitive baseball a challenge in and of itself. I live in New York and we practice from march and play until late october. My heart was ripped out and crushed when i realized id have to give up on baseball.
Something i wasn’t used to doing (quitting). I hated my life, i would take anywhere from 5to10 benadryls in the course of a game or practice, literally putting myself to sleep at times to try to ward of the hives. I would layer my under armor to the point tat my teammates would laugh at me. Finally it was to much to handle. I spiraled into depression. I was a zombie in school. My friends would constantly mention how much i changed. Through a lot of research and patience and good moral support from my parents and close friends, i have regained my life. My hives aren’t completely gone but I’m hoping the new diet might help me rid them.
I have never been happier, i found the job of my dreams, and believe it or not i actually want to do this more than play baseball. if you want to get rid of these hives you need to live on this website you need to be a complete pain in the butt with your doctors and your parents. you need to do tests, change your lifestyle, live healthier, think healthier and most importantly be motivated to change, to live and not just to live but to be happy again. I hope i helped. don’t give up we all know how you feel, we are here for you !
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Title: Re: Thinking of suicide to help Urticaria patients Post by: HivesGuy on October 10, 2011, 04:06:22 AM
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@ itchyguy–I’m really glad to hear that you’ve been able to get things under control, and your life seems to be going great. I think your attitude will carry you far. It seems like you have a “never quit” attitude. I think it is a must to make it through the agony of Cholinergic Urticaria. I’ve had so many depressed days, but I always made so much more progress when I would force myself to have a positive outlook and not to give up. I also loved baseball when I was in my teens. I usually made all-stars on my team (I was pitcher, but played all positions). I gave up on it in high school though, long before the hives came.
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Title: Re: Thinking of suicide to help Urticaria patients Post by: nowash on October 10, 2011, 09:01:55 PM
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Ray there is so MUCH to try for treatments for this disease. PLEASE You CANNOT give up now. You know researchers have categorized this disease into 4 subtypes, right? Each one works a different way, too, and you need to do a little thinking to determine which one you might have so you can treat it right. Here are the four subtypes (this is off memory, so don’t sue me): 1) ChU with anhidrosis/hypohidrosis – This subtype is characterized by a decreased ability to sweat with CD3+ cells (T cells) and mast cells clustered around the sweat glands. I believe the researchers found something strange with the muscarinic 3 acetylcholine receptor in that it was overexpressed on the mast cells and underexpressed on the sweat glands, not too sure. 2) ChU with poral occlusion – This subtype is characterized by keratin plugs, dead skin cells, on the opening of the sweat gland ducts preventing the sweat from escaping. It is also characterized by an inability to sweat, although exercise or sweat therapy seems to be able to clear the plugs. This subtype gets worse in the winter when sweating is not routine. Researchers have speculated different chemicals in the sweat could be causing the inflammation, such as the kinins, although I don’t think an allergy has been completely ruled out in this subtype. 3) ChU with sweat allergy – This subtype is characterized by an immunoglobulin E (IgE) based mechanism.
This one would be considered the “true” allergy out of all the different subtypes. This subtype actually has two different subcategories within it that characterize the pathogenesis. Either A) you react to something in your sweat or B) you react to something in your serum. Either can be confirmed by a skin prick test with either your own sweat or serum. Researchers have found a correlation in appearance of the wheals in each subcategory, too. Type B patients’ wheals tended to localize right on the hair follicle whereas type A patients’ wheals fell between the follicles and not on it. Both of these get worse in the summer. 4) ChU with serotonin metabolites – This subtype goes back to one recalcitrant patient in a 1980’s? study by Dr. Kaplan.
I believe the patient did not improve with antihistamines and presented with no histamine metabolites but with serotonin metabolites after an exercise challenge. The peak serotonin metabolite concentration did not occur at the same time as the peak symptoms in the patient, however. Not much is known about this subtype since there was only one patient that presented with it! It is good to note it nonetheless. As for treatments for each subtype I believe researchers speculated type 1 could be treated with immunosuppressants and type 2 could be treated with keratolytics and sweat therapy. Type 3A has been treated with omalizumab and self-sweat allergen shots.
Type 3B could presumably be treated with serum allergen shots or autohemotherapy, but that’s a speculation on my part. There have been some cases of chronic autoimmune urticaria that have gotten better with autohemotherapy. As for type 4, there was no special treatment listed for it, but I guess you could always try a serotonin antagonist such as granisetron, which is a treatment for migraines. Hydroxyzine and cyproheptadine have antiserotonin properties. You never know what could work. As for myself I believe I have type 3A since I had a positive reaction to my own sweat skin prick test. After seeing this I used the rest of my syringes and had a week’s worth of allergy shots. I gave me a shot each morning, and let me tell you: I have had this disease all my life and only with this experimental treatment have I felt what warmth SHOULD feel like. It blew my mind. I was standing in a hardware store shopping for a tool when I suddenly felt the most comfortable warmth on my back. I thought to myself, “Jesus Christ…
This is what people get to feel everyday?…” I just stood there for a while. Granted, I can’t guarantee that the sweat shots did that, since I was taking other medications at the time. Then again, I haven’t ever felt that with any antihistamine before, and I have tested all the other treatments I was using with no result, so I am hopeful to try the allergy shots again. I have bought about a hundred dermal syringes and am ready to try again, this time for longer. Some cases of atopic dermatitis have taken 2 years of immunotherapy before all their lesions went away, so if they can wait, I can wait.
I’m only telling you my story to give you and anybody else with a disease who has thought about suicide some hope. From my experiments I have found out this disease affects my movement, voice, breathing, posture, vision, and muscle tone; I entertain the thought of suicide nearly every day. However, I want to see normal again before I die, so I’m going to stick around to see what I and researchers can figure out. There is a cure for everything guys, we just have to find it.
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Title: Re: Thinking of suicide to help Urticaria patients Post by: Ray on October 12, 2011, 10:53:09 AM
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@nowash Thanks for the tips, I think I have the second one, because no matter what I do I cannot break a sweat, It’s just tough men living with this crap, I’m gonna get a gym membership Friday and start working out 6 out of 7 days a week to see If that helps along with a more healthier/cleaner diet. I graduated from High school almost a year and a half ago and developed It Immediately afterwards fortunately for me I didn’t have It while In school because It would have been tough to finish, I say about a month after I graduated I developed this and I’m only 20 years old I just feel like I’m letting so much time pass by.
@baseball1288 Yeah my parents seem to not understand either, my father does a little but my mom Is a complete asshole, she calls me all day to do favors for her raising my body temperature and when I tell her I’m not doing anymore favors she get’s an attitude as If I asked for this condition, and you can just email me at
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Title: Re: Thinking of suicide to help Urticaria patients Post by: baseball1288 on October 12, 2011, 06:54:33 PM
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Good to hear from you ray. Ive had this condition almost my whole life, there are ways to deal with it. First thing you should do is change your diet to loose weight if your over weight. Also if your just starting to workout you should start just by walking a few miles. Thats what Im doing I gained almost 40 pounds since january. I cant workout, everytime I breakout. I leave the gym in less then 20 minutes just cause I feel the hives coming on which they do so I leave. Good luck to you and your workouts youll sweat eventually, try it everyday.
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Title: Feeling down Post by: HivesForDayz on November 02, 2011, 09:58:06 AM
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So I lost my job at the warehouse. Hives are bugging. Got no money. I’m 20 years old live with my dad who is bipolar and gets worked up over the smallest things. We got into an argument now i’m looking for somewhere to live. I left my mom’s because I can’t stand her boyfriend and the whole situation weirds me out. I need time away from my family but I can’t keep a job long enough to support myself i need disability or welfare….
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Title: Re: Feeling down Post by: HivesGuy on November 02, 2011, 10:20:46 AM
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I’m really sorry to hear that. In my 11 years of living with Cholinergic Urticaria, I have had similar ups and downs like you. I’ve been totally broke, totally no direction, and more. I come from about the most dysfunctional family you can ever imagine (and my wife does as well for the most part). My father left when I was about 4 or 5 and moved to Florida so he could skip on child support back then (it worked). My mom remarried, only to have picked the most idiotic, drug addicted, physically abusive man she could have. That didn’t work out too well. But I have kept hanging on and hanging on, and I think you should too. Stay positive. You have a lot to look forward to. Keep these things in mind: 1. You are young. Your whole entire life is ahead of you. You can find a mate, find a career, find a purpose, work on improving your health, etc. Be glad that you are young. 2. We all go through rough patches. I have. Others on here have. Things will improve, but you can’t give up.
You’ve gotta hang in there. Life is an up and down roller coaster. 3. Don’t vote for Obama. That’s a partial joke, but there are lots of opportunities in the world for employment. If you can’t find a job that allows you to manage your hives and so forth, consider starting your own business. Do freelance work online on a site like eLance.com. Sell stuff on eBay. There are so many things you can do if you put your mind to it. While you are certainly free to get welfare, I wouldn’t encourage it. Only unless you have absolutely no other way. But there are always other ways. You have to be a fighter and not give up.
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Title: cured..and back again. Post by: Binnytheasd on November 07, 2011, 10:49:39 PM
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Hi, I just recently found out about this forum and finally have a place to tell people who understands the condition than any of my friends or family members do. In year 08 I found out I have cholinergic urticaria, what ever types of different urticaria there was, I almost experienced them all. I have outbreaks so often, eventually I stopped schooling. For the next one and a half years of my life, I spent at home or doctor trips.
Sometime in 09 I received a letter to informed me that I’m was to be enlisted into the army and it felt like a slap to my face, but I enlisted anyway. Day 1 in the army and I had none of my urticaria reaction or whatsoever. I was so happy my life was finally going to go back to normal, found someone I love and not have to have any kinds of restriction due to my skin conditions or at least until now, after almost 2 years, I’m feeling this so familiar pain again. I’m not sure how am I to face it again, so far i’ve been keeping it under wrap because I don’t want people around me to worry, especially my mom. Ever since I recovered, she’s been so happily encouraging me to get back to school after army. what did I ever do to deserve this? 🙁
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Title: Re: cured..and back again. Post by: HivesGuy on November 20, 2011, 02:12:33 PM
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Hello Binnytheasd, Yes, we all understand exactly what you are experiencing. I am glad you found this forum, and I hope you enjoy the posts of others. I know it can be hard and that you may be feeling “Why me?”
But whenever I’ve asked myself “why me,” I try to think of all of the other people who are suffering with a disease and think, “Why not me?” We all suffer in this life, and none of us are going to get out of this life alive, or without suffering. But try to take heart, and be positive. At least this condition can be managed, and it doesn’t appear to be terminal or anything like that. It is annoying and painful, but you can get through it. I hope that helps. Thanks for your post and welcome to the forum!
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Title: Re: Feeling down Post by: HivesForDayz on November 20, 2011, 06:35:40 PM
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Thanks for the support man I appreciate what your doing!
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Title: Re: Feeling down Post by: HivesGuy on November 20, 2011, 08:20:02 PM
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You’re welcome, and thank you for your contributions to the forum.
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Title: Re: Feeling down Post by: HivesForDayz on November 21, 2011, 08:32:56 AM
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Hives guy i really need some help to start making income at home you think you can give me some idea how to start off…I read you Jobs post but I feel so lost…
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Title: Re: Feeling down Post by: HivesGuy on November 21, 2011, 10:48:17 AM
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Hey, I’ve made money lots of ways from home in my life. I’ve done everything from eBay, blogging, and even doing freelance writing. Tell me which ways are most appealing to you, and what you need help with most, and I’d be happy to give you some advice to help you get started.
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Title: Re: any one feel like they took life for granted? Post by: DannyG on December 20, 2011, 11:24:45 PM
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Yeah I know exactly what you mean Ray. I’ve had it for nearly a year now and have not been able to do much because of it. Even just normal everyday living can be a real struggle. But I know that when it goes away I’ll be a different person. I’ll make sure I appreciate everything in life even down to the most basic things. I’ve also forgotten what it’s like to be hot – I can’t wait to exercise, sweat and be hot again. Danny
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Title: Re: Has Anyone Else Forgotten Whats It’s Like to Be Hot? Post by: DannyG on December 20, 2011, 11:37:49 PM
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Yeah!! I even have dreams about sweating and exercising. I look forward to the day they’re gone!
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Title: All the symptoms. Post by: nowash on January 05, 2012, 11:11:37 PM
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I hate the asthma I hate the rhinitis I hate the sore throat I hate the stuffy nose I hate the muffled voice I hate the stomach pain I hate the abdominal pain I hate the black outs I hate the blurred vision I hate the CHRONIC HEADACHE I hate the FURROWED BROW I hate the DROP IN BLOOD PRESSURE I HATE the WHEALS I HATE the CHRONIC REDNESS ON MY FACE I HATE the CHRONIC REDNESS ELSEWHERE I HATE the RED MACULES I HATE the FACT THAT IF DO ANYTHING SPONTANEOUSLY I FEEL LIKE I’M GOING TO DROWN I HATE the FEELING OF IMPENDING DOOM I HATE the PSYCHOLOGICAL EFFECTS I HATE the PSYCHOLOGICAL SCARS I HATE THE STARING I HATE THE PITY I HATE THAT I NOW KNOW THE SERENITY THAT NORMAL PEOPLE FEEL AND YET THOSE SAME PEOPLE HAVE THE GALL TO HAVE DEPRESSION I HATE THAT I CANNOT PRAUSNITZ KUSTNER THOSE PEOPLE WITHOUT GOING TO JAIL I HATE THAT I CAN’T FIGURE OUT HOW TO GET THAT ONE SERENE MOMENT BACK I HATE THE IRRITABILITY I HATE THAT IT AFFECTS MY FRIENDSHIPS I HATE THAT IT AFFECTS MY FAMILIAL RELATIONSHIPS I HATE THE SUGGESTION OF ANTIDEPRESSANTS I HATE THE FACT THAT SOME DRUNK DRIVER PROBABLY CAUSED THIS BY DESTROYING MY MOTHER’S HIP AND LEADING HER TO REQUIRE A C SECTION I HATE THAT I’M SO SKINNY I HATE THAT I’M AN ATHLETIC BOY TRAPPED IN A DISEASED BODY I HATE THE THROBBING STOMACH EVERY MORNING I HATE THAT I CAN’T MOVE SMOOTHLY WITHOUT STINGING I HATE THE DARK EYES I HATE THE ENLARGED NOSE I HATE THE ACNE I HATE THE PARANOIA I HATE THE LACK OF SLEEP I HATE THAT I CAN’T SEE THROUGH THE BRAIN FOG I HATE THAT I DON’T KNOW IF IT WILL EVER GO AWAY I HATE THE GENETIC SELECTIVITY I HATE THAT I FEELING I WILL HAVE TO SETTLE I HATE THAT THERE ARE OTHER WORSE DISEASES OUT THERE I HATE THAT I NEED TO COMPLAIN SO MUCH I HATE THAT THIS IS SO PERSONAL THAT EVEN IF I MAKE ENOUGH MONEY, DEVELOP A CURE, AND THEN BE ABLE TO LIVE NORMALLY NO ONE ELSE, NOT EVEN A WIFE, WILL GIVE A report OR UNDERSTAND WHAT I’VE BEEN THROUGH. Except y’all. How can someone else’s serenity make another go crazy? That must be the picture definition of jealousy. I feel like I live in another world where pain is happiness and conflict is peace. And it’s colliding with the normal one. I have very little empathy for anyone anymore. There’s so much work to do. I hope we get to play when we’re done.
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Title: Re: All the symptoms. Post by: HivesGuy on January 12, 2012, 02:25:22 PM
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I feel your pain nowash. Hang in there man. Things will get better. Vent when you have to, and then pick yourself back up and keep truckin’. You can beat this thing. Trust me.
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Title: Re: All the symptoms. Post by: nowash on January 12, 2012, 05:50:23 PM
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Sorry for the language HG, lol. It does make sense this would be a G-rated forum. I was wondering about that AFTER I posted it. Thanks.
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Title: Can’t Cope. Post by: dbacs on January 28, 2012, 04:53:45 PM
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I have autoimmune chronic urticaria. I’ve had it for 13 years. I am currently taking prednisone, cyclosporine, and antihistamines, but nothing is helping. I’m fed up with it. My life is not worth living like this. All my family and friends are mad at me because i don’t do anything with them anymore. I’ve been mising holidays and weddings. I am seeing a councelor but it is not helping, and my family can’t even talk to me about it.
Half of them thinks its an exageration, and don’t understand how horrible it is. The other half get pissed off saying they can’t understand why dr’s can’t treat it. Neither one is helpful. I will be increasing the cyclosporine soon. If it doesn’t help i’m not sure what i’ll do next.
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Title: Re: Thinking of suicide to help Urticaria patients Post by: dbacs on January 28, 2012, 05:01:24 PM
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Quote from: Ray on July 29, 2011, 03:07:05 PM
So I’m getting to the point where I’m just starting to not care about life a anymore, every day just complete pain and chaos with this crap, and every day my dad Is bugging and hackling me to go out In public, I keep telling him I can’t but he just won’t stop, just yesterday he’s telling me that I should go to the bears training camp practice on Sunday and stand out In the heat, once again I keep telling him It’s not possible, but this dude just won’t stop bothering me. I’m taking all kinds of anti histamines and some other stuff too but still nothing Is working, I was trying to work out but lately their has been a heat wave where I live so I can’t do that. I’m starting to think Doctors don’t really know much about this condition otherwise their would be some kind of medicine to manage It, so basically I don’t think nothing will be done until something drastically happen, so I’m thinking about comitting suicide and writing a note to explain my reasons to get notoriety for this condition. I’m not being selfish I’m just tirec of going through this and tired of watchings others go through thiks as well. The hardest part is when your family thinks they know better than you. They don’t! Think of the bright side… You only get the hives when you’re hot. So just avoid heat, i guess, and you’ll stay cured. I’ve had hives for 13 years and i get them everyday, sometimes all day, and not just from heat.
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Title: Re: Can’t Cope. Post by: nowash on January 28, 2012, 05:37:08 PM
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You could always try autohemotherapy, helminth therapy or omalizumab. I don’t have AIU but I take Solaray’s brand of chondroitin sulfate and glucosamine with hyaluronan. It helps mostly the mucous membrane problems associated with urticaria (asthma, rhinitis), but it does prevent some of the actual hives themselves; you could try that too. Have you been checked for chronic infections? There’s a stern facial expression to go with this statement: We are so close to a cure; don’t quit now. Push through the pain during the interactions with your family and friends, because you won’t be able to get them back if you lose them to the disease.
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Title: Re: Can’t Cope. Post by: dbacs on January 28, 2012, 06:10:43 PM
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I tried Xolair (omaluzimab) for 2 and a half years with no help. I’ve already lost my family and freinds. I can’t deal with the pain from the hives. I have to be completely still and focus on lowering the pain. i can’t do that when i’m around people when i have hives. I have asked my immunologist for pain meds. They always refer me to someone else, then they refer me to someone else, then that person refers me back to the first doc. I don’t know how to deal with the pain.
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Title: Re: Can’t Cope. Post by: Baldeagle73 on January 29, 2012, 03:52:30 AM
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Hi DBacs I understand your feelings, try to look at what is causing the attacks. Try to examine the trigger foods such as tomatoes, strawberries, melon, cream, nuts, and see if they have an effect when you eat them. Also try the apple cider vinegar treatment. It is not to every ones liking but persevere as it takes upwards of 3-4 months to really get to work. However you should see some improvement after a few weeks. look up the cider on the Net and buy the real liquid not the filtered type. Good luck and I hope this works for you . Note: You need to drink 2 tablespoons twice daily in a glass of water or fruit juice.
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Title: Re: Thinking of suicide to help Urticaria patients Post by: lovecase999 on January 29, 2012, 08:21:35 AM
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ray u can use olopatadine hydrocloride tablets(allenel) these are very nice once taken it works for 3 days. u will not get any hives for 3 days atleast. this is my personal experience
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Title: Re: Can’t Cope. Post by: dbacs on January 29, 2012, 09:21:27 AM
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Hi i have already tried all of that. Did all the “special” diets and cleanses, ACV, food elimination, etc… It is not caused by an allergy, or PH inbalance. It is caused by an over active immune system which attacks my skin by mistake. I also had rheumatoid arthritis when i was younger, and now Autoimmune Hearing loss (am now deaf with cochlear implant). An overactive immune system is the cause of both also.
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Title: Re: Can’t Cope. Post by: nowash on January 29, 2012, 01:27:42 PM
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Seriously, helminth therapy would seem like your best bet right now, assuming your vitamin d levels have already been tested. Have you done the ASST for chronic urticaria? Have you tested vitamin D? What have you tried in these 13 years?
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Title: Re: Can’t Cope. Post by: dbacs on January 29, 2012, 01:53:47 PM
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I have tried everything except Helminth therapy. I didn’t know that was a real thing people did. I have read about it for treating autoimmune bowel disease, but never for ACIU. to sum it up: hydroxyzine loratidine benadryl zyrtek desloratadine chlorpheneramine allegra doxylamine doxepin plaquenil prednisone medrol cyclosporine methotrexate omaluzimab cimetidine ranitidine prilosec At times, i was on 6 or more meds at once, with no effect. I have read about blood cleaning, where they put your blood through a dialysis machine.
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Title: Re: Can’t Cope. Post by: HivesGuy on February 11, 2012, 07:25:34 AM
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Hey Dbacs, Man, I can just feel your frustration with life right now, and I’ve felt the same way, and many on this forum feel the same way. But you’ve gotta hang in there. First–your friends and family–just point them to this forum and maybe they can read it and see that this is serious, and that people really suffer with this. And if they aren’t there for you, then they aren’t really your friends in the first place. Secondly–it certainly seems like you’ve tried a lot.
You said you’ve tried diets. What specifically have you done, and for how long? I’ve done countless diets in the past, and they didnt’ work. It wasn’t until I made a committment for long term, and really listened to my body that things began to turn around. Lastly, vitamin D and other vitamins may be something to look into if you aren’t doing it (and you can get tested by your doc). I was were you are, and some days dreamed of death as a sweet release to take me from this world. My life seemed so utterly bleak, hopeless, and pointless. I’m glad I held on. Life can and WILL change. My advice is, if you haven’t tried the following, to consider these things (and always talk to a doc first): Diet modification for long term (specifically cutting out all processed foods, dyes, excess/processed sugar, oils/fats, etc).
Minimum of 1-2 months to see if it starts to help. Considering probiotics if you have any stomach pains, gas, or issues with digestion Considering a multivitamin, and/or vitamin D supplementation (you can get tested for vitamin D, and it can take weeks or a month or so to build your levels up to normal) You may want to test for vitamin deficiencies–as vitmamins can directly impact your immune system. Shower filtration–either a water softener, showerhead filter, etc. Dust mite sheets for bedding If you haven’t tried any of the above, talk to a doctor, and try it. I know what you are saying about the overactive immune system being the problem, but the fact of the matter is that overactive immune system can be caused by any number of factors (including diet, vitamin levels, etc.).
Lastly, be positive. You can get through this in the long-term, and this forum is proof of that. It has countless examples of people who have overcome this condition and are living life. They went through EXACTLY what you are going through now. Best of luck, and let us know how things progress.
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Title: Re: Thinking of suicide to help Urticaria patients Post by: HeatLad on April 22, 2012, 04:29:02 PM
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Message me now mate, we can have some banter about this and i will make you feel better about this i promise!
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Title: Re: Can’t Cope. Post by: dbacs on April 24, 2012, 06:29:28 PM
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I also had Rheumatoid Arthritis, and autoimmune hearing loss. Do you know if diet helps those? If it does i will try changing my diet for my hives. The latest thing that i am struggling with is dating. I have not met any girls that can just look past my health problems. Especially at my age because they all want to start a family. Once they find out i have health problems they lose interest. Also fed up with not being able to work. Having a hard time finding a way to be happy with the things i have, because everyone else has their family,career, cars, houses, etc…