Gabapentin (Neurontin) For Cholinergic Urticaria? Post by: silvertones on February 04, 2010, 05:27:17 AM
I’m now on my third round. Had it twice in the last 30 years. Did all the tests etc,etc. All 3 times were high stress times that seemed to cause it. The first 2 times lasted about a year. It went away when the stress went away. This time it’s been 2 years and is different.
I have 2 different reactions. Sometimes it’s just my hands, just my feet or both.
The itch,burn & pain is so intense I can’t stand it. Other times I get the normal all over itch with instant rash /bumps. My stress situation is still very present and there’s nothing I can do about it.
Title: Re: My Story Post by: HivesGuy on February 04, 2010, 10:16:12 AM
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Hey silvertones,
Thanks for the great post and welcome to the forum.
It is great to know that at least you have gone into remission for long periods of time. I agree that high stress can seem to trigger this, as I guess I was pretty stressed both times it came back for me too.
When it went away those times for you, did it just one day disappear?
Anyway, thanks again for the post and welcome.
Thanks for the great post and welcome to the forum.
It is great to know that at least you have gone into remission for long periods of time. I agree that high stress can seem to trigger this, as I guess I was pretty stressed both times it came back for me too.
When it went away those times for you, did it just one day disappear?
Anyway, thanks again for the post and welcome.
Title: Re: My Story Post by: silvertones on February 12, 2010, 09:40:50 AM
I wanted to see if anyone is experiencing this. I like everyone else get the itchy feel with bumps if I do anything physical were I would normally sweat. If I cool off it goes away. I also get another set of symptoms that are actually worse. I f I have any negative thoughts or excitement I get SEVER burning and itching in just my feet and hands. It actually starts with the feeling that someone is pricking me in the feet and hands with a needle. It then multiplies as if being pricked 1000 times at once. I then get this real weird feeling that goes through my body. Just the anticipation of this in the morning when I get up sets it off. After an hour of this I’m totally worn out.
Title: Re: My Story Post by: HivesGuy on February 12, 2010, 10:59:29 AM
Hey silvertones,
About the first part: Yes–When I get hot I get the bumps (sometimes, sometimes not) and it goes away very quickly once I start to cool down.
About the second part: No, I never get the pins/prickly sensation on my hands and feet. In fact, when you said that, another condition came into my mind that has those symptoms: Fabry disease.
I am not saying you have this, but one of the signs of Fabry Disease is the burning and/or prickly sensation in the hands and feet. It is a different condition than Cholinergic Urticaria, and I don’t believe they are related. Then again, Cholinergic Urticaria can behave in weird ways, so you never know. But you should google that condition and see if you have any other symptoms, and if so, you may want to get tested by a doctor.
Also, other conditions can cause tingling in the hands such as diabetes, multiple sclerosis, nerve damage, etc. I think it is possible it may be a separate condition. Or, perhaps it is just Cholinergic Urticaria behaving strangely??
I do not get the itchy and prickly sensation in my feet or hands at all that I can recall.
Also, keep us posted on anything new. That symptom is certainly interesting.
Any other Cholinergic Urticaria people get this?
About the first part: Yes–When I get hot I get the bumps (sometimes, sometimes not) and it goes away very quickly once I start to cool down.
About the second part: No, I never get the pins/prickly sensation on my hands and feet. In fact, when you said that, another condition came into my mind that has those symptoms: Fabry disease.
I am not saying you have this, but one of the signs of Fabry Disease is the burning and/or prickly sensation in the hands and feet. It is a different condition than Cholinergic Urticaria, and I don’t believe they are related. Then again, Cholinergic Urticaria can behave in weird ways, so you never know. But you should google that condition and see if you have any other symptoms, and if so, you may want to get tested by a doctor.
Also, other conditions can cause tingling in the hands such as diabetes, multiple sclerosis, nerve damage, etc. I think it is possible it may be a separate condition. Or, perhaps it is just Cholinergic Urticaria behaving strangely??
I do not get the itchy and prickly sensation in my feet or hands at all that I can recall.
Also, keep us posted on anything new. That symptom is certainly interesting.
Any other Cholinergic Urticaria people get this?
Title: Re: My Story Post by: thecheezit on February 16, 2010, 10:56:12 PM
Did all the tests etc,etc. All 3 times were high stress times that seemed to cause it.
You mention you have done tests, I’m curious as to what tests exactly? If you dont mind I would like to see what tests you have done.
You mention high stress as a factor, this seems to be thing that most people with Cholinergic Urticaria have in common.
Now what does high stress do? High stress can cause a great increase in cortisol levels which in turn can lead to other hormonal imbalances.
Have you got a complete hormone test done?
Title: Re: My Story Post by: silvertones on February 18, 2010, 05:53:46 AM
I did the tests 30 years ago. The typical tests a Dr will run when you tell him you itch. Have not had a hormone test done. Now lt’s talk about another side to this whole thing. $$$$ & frustration with Doctors. I have a $3000.oo deductible on my health Insurance. Doctors won’t listen to what you say. They won’t let you tell them what you’d like to have done ’cause you know more about it then they do. I don’t want to go through $3000 do a bunch of useless allergy test and being prescribed a complete pharmacopia of useless allergy drugs. To Doctors itch = allergy and their minds are closed. I tried a couple weeks ago with mine.
Title: Re: My Story Post by: silvertones on February 21, 2010, 07:31:21 AM
I’ve been digging real deep for a common thread here and else were and I believe we all suffer from a physical reaction to a psychiatric issue. I went to the Doctor and I explained my situation and that stress or anything emotional would trigger it. I also explained that when it happens I get the “fight or flight” jitters. His reply was that I had nerve issues and wanted me to take a nerve test and he also gave me a prescription. When I found out the cost of the nerve test, $2400.00, i had to decline. I think he only wanted it to cover his butt in case I really had some sort of neurological issue. OK so the drug he prescribed is GABAPENTIN. It’s primary FDA appoval is for epilepsy but guess what it’s other approved uses are: 1. nerve pain 2. manic depression and other psychiatric disorders
I have been on this and all symptoms have gone AND my mental state is very even. I’m happy, confident and no longer edgy. I’m not irritable or aggressive. And no I’m not high either.
I know it’s tough to acknowledge that you may have a mental condition but the brain is just another organ that needs to be tended to.
I’ll keep you posted.
I have been on this and all symptoms have gone AND my mental state is very even. I’m happy, confident and no longer edgy. I’m not irritable or aggressive. And no I’m not high either.
I know it’s tough to acknowledge that you may have a mental condition but the brain is just another organ that needs to be tended to.
I’ll keep you posted.
Title: Re: My Story Post by: HivesGuy on February 21, 2010, 10:43:57 AM
Hey silvertones,
That sounds very very interesting, and I certainly appreciate your sharing that experience.
If the drug does continue to repress your Cholinergic Urticaria, that would be very fascinating. For one, we may later be able to see exactly what the drug does alter biologically, which could lead us to realize what may be wrong with our bodies in the first place (such as a deficiency in some hormone or enzyme). According to wikipedia, this medication seems to have some effect on the nerve channels in our nervous system.
So please definitely keep us posted with how this treatment works out for you. I hope it does continue to keep the Cholinergic Urticaria at bay. But if not, please let us know that too periodically.
As far as the psychological stuff–I find that interesting too. I wouldn’t consider myself mentally unstable or anything like that. But I do have to admit that I do get quite a bit of anxiety around social situations. I tend to be a bit of a recluse. I prefer solitude. I tell my wife all the time that we could move to some isolated island…and as long as I have food, shelter, and the internet, I would be fine. My wife is the only person I am around on a regular basis, and I am perfectly content with that.
I don’t know if this goes for everyone on this forum, but I am definitely an introvert, and many people posting also give me that vibe. However, I also recall some posts which sounded like they were rather social too, so I don’t know.
And I experienced a lot of stress and instability growing up too. A lot of family drama and fighting that I’ve endured growing up as a child. Perhaps that has added to my personality in some way. It is kind of hard to know for sure.
Anyway, great post and I really apprecate your sharing. Please update us on how this treamtent progresses.
Also, it does seem to have some bad side effects in some people, so you may want to research those and make sure that you don’t experience them yourself (and if so, talk to your doctor imimediately–for health’s sake). Good luck, and thanks again!
That sounds very very interesting, and I certainly appreciate your sharing that experience.
If the drug does continue to repress your Cholinergic Urticaria, that would be very fascinating. For one, we may later be able to see exactly what the drug does alter biologically, which could lead us to realize what may be wrong with our bodies in the first place (such as a deficiency in some hormone or enzyme). According to wikipedia, this medication seems to have some effect on the nerve channels in our nervous system.
So please definitely keep us posted with how this treatment works out for you. I hope it does continue to keep the Cholinergic Urticaria at bay. But if not, please let us know that too periodically.
As far as the psychological stuff–I find that interesting too. I wouldn’t consider myself mentally unstable or anything like that. But I do have to admit that I do get quite a bit of anxiety around social situations. I tend to be a bit of a recluse. I prefer solitude. I tell my wife all the time that we could move to some isolated island…and as long as I have food, shelter, and the internet, I would be fine. My wife is the only person I am around on a regular basis, and I am perfectly content with that.
I don’t know if this goes for everyone on this forum, but I am definitely an introvert, and many people posting also give me that vibe. However, I also recall some posts which sounded like they were rather social too, so I don’t know.
And I experienced a lot of stress and instability growing up too. A lot of family drama and fighting that I’ve endured growing up as a child. Perhaps that has added to my personality in some way. It is kind of hard to know for sure.
Anyway, great post and I really apprecate your sharing. Please update us on how this treamtent progresses.
Also, it does seem to have some bad side effects in some people, so you may want to research those and make sure that you don’t experience them yourself (and if so, talk to your doctor imimediately–for health’s sake). Good luck, and thanks again!
Title: Re: My Story Post by: silvertones on February 21, 2010, 11:13:31 AM
I will keep you posted and not abandon this site. It’s right up on my toolbar. I’ve not experienced any of the side effects. I’m by no means crazy or even close but really do have a flip flop type of personality. If something really interests me I get, as my wife says, crazed. I think this drug has sort of sorted things out. The funny thing, and this also may be a clue, is as a child I was an extreme introvert. My mother told me that even as a young baby she could set on a blaket on the florr and 3 hours later I’d still be sitting in the same place. They took me to the Dr. to be tested for retardation. As I became a teen I was still sort of introverted but had a couple of friends but never was part of that click in school or popular. I didn’t play sports. At 13 I discovered that I had a talent for the bass guitar, we’re talking 1964, Beatles etc. I got in a band and we became quite good and played at the school dances. Now I was kind of popular but not sure if I liked it cause they liked John the musician and not necessarily the person. The way I sort of came out of my shell was based on that experience. I learned if I could do things people would like me. Now at 58 I’m one of these guys that can do anything. I’m a constant consultant to everyone. After I fix their stuff their gone. I’ve gotten sort of sick of this. I’m just giving a little insight on this as I truly feel that there may be some mind/body chemistry that needs adjusting. I feel once on a more even keel I’ll drop the drug and give it a go.
Title: Re: My Story Post by: hieveryone on February 21, 2010, 02:22:00 PM
Hi, great posts these last. I also tend to be a little bit shy, although I have some friends, I never talk too much in very crowded groups, this changes when I’m with little people. Other curius thing is, as you said, when I like something very much I start to feel like a lot of anxiety and when I stop doing that I feel like dazed. Well, I dont know if that could be the cause or another alergy simptom or simply we dont love the big crowd becouse of our Cholinergic Urticaria. Anyway please keep us informed. Have you ever tried going to a psychologist as a posible treatment? See you…
Title: Re: My Story Post by: HivesGuy on February 21, 2010, 04:21:51 PM
Silvertones–That is interesting. I was always very shy when I was young, and felt very uncomfortable in new settings. I can remember not really being great at making friends because I was so shy and timid around people.
In high school, I also experienced more of a “coming out of my shell” experience. I started to really hang out with friends, I was way more social than ever, and more. Then, after high school, I grew apart from my friends, and eventually we stopping hanging out completely. Around this time, I met my wife. I also slowly turned back into an introvert. At this point, I am VERY introverted.
I can do the social thing, and when I am social I tend to be funny, crack jokes, and so forth. But I really enjoy being alone more. Reading books, writing articles, and so forth are so much more enjoyable. People tend to get on my nerves anyway when I am around them for too long.
Hieveryone–That is interesting that you too experience a great deal of anxiety. Perhaps we should start a thread titled “Are you anxious or introverted” and see how many people on this forum fit the bill.
I get super excited about stuff, and get a massive adrenaline rush. I also tend to get extraordinarily worried about stuff. I tend to have a lot of anxiety. This used to manifest itself as really sweaty palms and armpits. Until the hives came, that is.
In high school, I also experienced more of a “coming out of my shell” experience. I started to really hang out with friends, I was way more social than ever, and more. Then, after high school, I grew apart from my friends, and eventually we stopping hanging out completely. Around this time, I met my wife. I also slowly turned back into an introvert. At this point, I am VERY introverted.
I can do the social thing, and when I am social I tend to be funny, crack jokes, and so forth. But I really enjoy being alone more. Reading books, writing articles, and so forth are so much more enjoyable. People tend to get on my nerves anyway when I am around them for too long.
Hieveryone–That is interesting that you too experience a great deal of anxiety. Perhaps we should start a thread titled “Are you anxious or introverted” and see how many people on this forum fit the bill.
I get super excited about stuff, and get a massive adrenaline rush. I also tend to get extraordinarily worried about stuff. I tend to have a lot of anxiety. This used to manifest itself as really sweaty palms and armpits. Until the hives came, that is.
Title: Re: My Story Post by: silvertones on February 22, 2010, 05:09:13 AM
I get super excited about stuff, and get a massive adrenaline rush. I also tend to get extraordinarily worried about stuff. I tend to have a lot of anxiety. This used to manifest itself as really sweaty palms and armpits. Until the hives came, that is.
This is the key that will unlock the door for us. It is the common issue.
Title: Re: My Story Post by: thecheezit on February 24, 2010, 02:54:04 PM
I also have some anxiety and stress, but I believe its because of Cholinergic Urticaria, I dont really think this is a cause but more of an effect of Cholinergic Urticaria.
Title: Re: My Story Post by: silvertones on February 25, 2010, 05:36:14 AM
What came first the chicken or the egg?
Title: Re: My Story Post by: hieveryone on February 25, 2010, 06:58:37 AM
Yeah, I think the same tha Silverstones. We surely know people with more stress than us but without Cholinergic Urticaria and this doesnt mean anything, our bodies seem to be more sensitive to stress. I can remember that I already had this stress personality before Cholinergic Urticaria (usually with videogames jeje) and didnt go out a lot (althoug I also think that this began when I started to drink alcohol) If you notice something with your new treatment keep us informed please!
Title: Re: My Story Post by: thecheezit on February 25, 2010, 09:17:30 PM
For me at least, my stress is all from my current problems (various hormone imbalances and Cholinergic Urticaria). Before my problems began I was happy and living life, then once my Cholinergic Urticaria hit I was miserable and became stressed out due to having to completely change my life, had to quit sports and dropped out of school and started taking class online ::). Those are the reasons why I am stressed and I also get stressed when I think about my future and how my Cholinergic Urticaria could ruin it.
But then again in “some” people “heavy” stress could in a way be the cause of their Cholinergic Urticaria because prolonged stress can cause hormonal and other problems in the body causing it to be out of balance.
But then again in “some” people “heavy” stress could in a way be the cause of their Cholinergic Urticaria because prolonged stress can cause hormonal and other problems in the body causing it to be out of balance.
Title: Re: My Story Post by: silvertones on February 27, 2010, 11:49:12 AM
The first time I ever had this was 30 years ago. I went to a local Dr. and he sent me for all of the tests and then to an allergist and then to a dermatologist. No help whatsoever. My wife’s sister told me of another Dr. in the next town that was supposed to be wonderful. His name was Dr. Trenkle in Ellsworth, Me. He’s an MD as well as a DO. He reviewed my records and we talked of my life situation. His final diagnosis, “John you’re a very sensitive guy and are having physical reactions to your emotional state”.
Title: Re: My Story Post by: HivesGuy on February 27, 2010, 01:47:06 PM
The first time I ever had this was 30 years ago. I went to a local Dr. and he sent me for all of the tests and then to an allergist and then to a dermatologist. No help whatsoever. My wife’s sister told me of another Dr. in the next town that was supposed to be wonderful. His name was Dr. Trenkle in Ellsworth, Me. He’s an MD as well as a DO. He reviewed my records and we talked of my life situation. His final diagnosis, “John you’re a very sensitive guy and are having physical reactions to your emotional state”.
Just out of curiosity, have you had this consistently for the last 30 years? Or did it ever go away for a period of time?
Title: Re: My Story Post by: silvertones on March 01, 2010, 11:08:20 AM
No I haven’t had this for 30 years. This is my third bout in 30 years. Each time it would eventually go away when my life straightened out.
Title: Re: My Story Post by: dice on March 02, 2010, 05:51:42 AM
Before finding this place I posted this question on another forum and having just updated the thread promoting this site I got a response saying the following:
Quote
There was an elderly lady on embarrassing bodies this week who was constantly itchy and has caused considerable damage to her skin from it.
After seeing the doctors, she was referred to a psychiatrist and he believed in her case it was partly due to mild depression, as she didn’t get out much and was lonely. She was also depresed from the constant itching and lack of sleep, a kind of cause-and-effect relationship.
Might be one avenue worth exploring, if its still bothering you OP.
After seeing the doctors, she was referred to a psychiatrist and he believed in her case it was partly due to mild depression, as she didn’t get out much and was lonely. She was also depresed from the constant itching and lack of sleep, a kind of cause-and-effect relationship.
Might be one avenue worth exploring, if its still bothering you OP.
Title: Re: My Story Post by: HivesGuy on March 02, 2010, 06:33:35 AM
@Silvertones–That is interesting that it cleared up once your stress levels were back down. How long did you have it each time previously? Months or years at a time?
@Dice–Thanks for that info. Very interesting.
After thinking about this stress/anxiety thing for a while, I am really not sure now. Is the stress and anxiety causing the Cholinergic Urticaria, or is it exaggerated by the Cholinergic Urticaria? As silvertones put it, “which came first, the chicken or the egg?”
While I do get anxious quite often, after analyzing it in more detail recently, I think it is actually normal. Who doesn’t get anxious or stressed by life? Watching shows like American Idol and so forth, you can definitely see the anxiety on people’s face as they perform in front of live audiences/judges. So I think anxiety is somewhat normal, and everyone deals with it. It is as normal as fear or laughter. And I probably have a much lower stress level than 95% of people in the world in all honesty.
I do feel like I am perhaps a little more anxious than some, but is it because I am always subconsciously dreading an attack? Or am I just overly anxious? It is hard to know for sure. I only feel that anxiety mostly when I go out, and that is rare. I go into the public about once per week, and even then I am not really overly anxious unless something happens out of the norm (like someone suprises me or talks to me randomly). In those situations, I feel a little nervous because I am naturally shy and introverted, but again, I would dare say that is a fairly normal response for most people.
It is always possible that Cholinergic Urticaria makes us more aware of our anxiety. Since anxiety and nervousness sometimes causes a rush of acetylcholine (which subsequently causes a rush of stinging needles), perhaps we are more aware of our own anxiety or stress than most people.
A funny thing happened to me yesterday: I was walking in walmart with my wife, and they had the heat system up really high (which is unusual for that particular store). I was fine, but I could feel that my body was heating up. I thought I would make it, but I knew I was skating on a fine line.
Then, it just so happened that my wife ran into someone she knew from work. I had to introduce myself, and I was totally caught off guard (we usually never see anyone we know there). Because it sort of surprised me for a second, this caused a quick spike of acetylcholine/adrenaline, and it sent my hives off. So while my wife was talking to her friend, I was trying to be as inconspicuous as possible while scratching myself. I eventually had to just give my wife the credit card and go sit in the car. I was so frustrated.
What is even more frustrating is that people have no idea what torture I am feeling as I sit there and try to appear normal…
@Dice–Thanks for that info. Very interesting.
After thinking about this stress/anxiety thing for a while, I am really not sure now. Is the stress and anxiety causing the Cholinergic Urticaria, or is it exaggerated by the Cholinergic Urticaria? As silvertones put it, “which came first, the chicken or the egg?”
While I do get anxious quite often, after analyzing it in more detail recently, I think it is actually normal. Who doesn’t get anxious or stressed by life? Watching shows like American Idol and so forth, you can definitely see the anxiety on people’s face as they perform in front of live audiences/judges. So I think anxiety is somewhat normal, and everyone deals with it. It is as normal as fear or laughter. And I probably have a much lower stress level than 95% of people in the world in all honesty.
I do feel like I am perhaps a little more anxious than some, but is it because I am always subconsciously dreading an attack? Or am I just overly anxious? It is hard to know for sure. I only feel that anxiety mostly when I go out, and that is rare. I go into the public about once per week, and even then I am not really overly anxious unless something happens out of the norm (like someone suprises me or talks to me randomly). In those situations, I feel a little nervous because I am naturally shy and introverted, but again, I would dare say that is a fairly normal response for most people.
It is always possible that Cholinergic Urticaria makes us more aware of our anxiety. Since anxiety and nervousness sometimes causes a rush of acetylcholine (which subsequently causes a rush of stinging needles), perhaps we are more aware of our own anxiety or stress than most people.
A funny thing happened to me yesterday: I was walking in walmart with my wife, and they had the heat system up really high (which is unusual for that particular store). I was fine, but I could feel that my body was heating up. I thought I would make it, but I knew I was skating on a fine line.
Then, it just so happened that my wife ran into someone she knew from work. I had to introduce myself, and I was totally caught off guard (we usually never see anyone we know there). Because it sort of surprised me for a second, this caused a quick spike of acetylcholine/adrenaline, and it sent my hives off. So while my wife was talking to her friend, I was trying to be as inconspicuous as possible while scratching myself. I eventually had to just give my wife the credit card and go sit in the car. I was so frustrated.
What is even more frustrating is that people have no idea what torture I am feeling as I sit there and try to appear normal…
Title: Re: My Story Post by: MoshiMoshi on March 07, 2010, 06:59:55 AM
All 3 times were high stress times that seemed to cause it. The first 2 times lasted about a year. It went away when the stress went away.
Hmm, interesting you say that.
The two periods when my Cholinergic Urticaria returned were during months of exams. Though this can’t really be tested out, its interesting.
Title: Re: My Story Post by: Newear2006 on March 08, 2010, 01:38:29 PM
I get super excited about stuff, and get a massive adrenaline rush. I also tend to get extraordinarily worried about stuff. I tend to have a lot of anxiety. This used to manifest itself as really sweaty palms and armpits. Until the hives came, that is.
This is the key that will unlock the door for us. It is the common issue.
I have Cholinergic Urticaria and I am exactly like you guys…
Title: Re: My Story Post by: silvertones on March 09, 2010, 11:49:02 AM
It’s been a little over 2 weeks now. My mood has improved and so has my general feeling of well being. I’m able to go to the park and walk a mile twice a day. I would like to loose a little weight. I’m 60 and the old blood pressure is trying to creep up even though it’s still in the normal range. At times I’m aware that it could break out but when I get that feeling I’m now able to just ignore it as opposed to getting panicky and it goes away. My life has been returned to me. Hope it stays that way. I think with time I’ll be able to do away with the drug.
Title: Re: My Story Post by: HivesGuy on March 09, 2010, 02:16:12 PM
Thanks for the update. I hope it stays gone forever too. If anything changes, please keep us updated. Thanks again
Title: Re: My Story Post by: dice on March 13, 2010, 03:01:27 PM
Just to update on my previous post, I watched the show and she was diagnosed as having something else. I don’t remember what the name given was I’m afraid.
Title: Re: My Story Post by: silvertones on March 30, 2010, 05:09:06 AM
Still doing fine. Not 100% but 95%. I’m going to repeat what I posted elsewhere.. The reason I’m not 100% is that I’m treating the trigger verses the cause but hey anything is better then the alternative.
Let me clarify a little as to what I believe. Here’s the situation, there are tree things involved: 1. Our bodies 2. a gun (symbolic of course ) 3. A trigger
Something has happen to our bodies. I personally think it’s some sort of stress that changes things. When the trigger is pulled ( chemical secretion in our bodies ) the gun shoots us so that we get this God awful reaction. We have all been trying to remove the gun so as to prevent this. I seem to think, and my treatment verifies this to some degree, that the trigger is also mental. Having had this twice before it will go away once the initial cause is removed. I’ve chosen to disable the trigger through the use of mild psychiatric drugs. The drugs have also helped me deal with the initial stress factor that started this this time.Hopefully in time the real problem will go so I can stop the drugs.
Let me clarify a little as to what I believe. Here’s the situation, there are tree things involved: 1. Our bodies 2. a gun (symbolic of course ) 3. A trigger
Something has happen to our bodies. I personally think it’s some sort of stress that changes things. When the trigger is pulled ( chemical secretion in our bodies ) the gun shoots us so that we get this God awful reaction. We have all been trying to remove the gun so as to prevent this. I seem to think, and my treatment verifies this to some degree, that the trigger is also mental. Having had this twice before it will go away once the initial cause is removed. I’ve chosen to disable the trigger through the use of mild psychiatric drugs. The drugs have also helped me deal with the initial stress factor that started this this time.Hopefully in time the real problem will go so I can stop the drugs.
Title: Re: My Story Post by: silvertones on April 06, 2010, 01:34:10 PM
Ok as I said I’m 95% cured of the symptoms. Not sure about the cause. I had a situation that happened today and it reminded me of the same issue I had last year. I think it’s related but want to hear what you all think. I try to not do any thing in the heat of the day however sometimes it can’t be avoided. Today my car broke down and I had to repair it. It was a fairly simple job and not all that strenuous. Maybe 30 minutes to dis assemble and 30 minutes to reassemble. The key to this though was it was in the direct sun and about 86 Degrees. A couple years ago this would have been a piece of cake and I would have seated like a pig. Today no sweat whatsoever and I had to stop every couple of minutes as I could barely breath and got sort of wobbly. I think I was getting some sort of heat stroke that came on quickly as I was bone dry. No itching though. What do you all think.
Title: Re: My Story Post by: HivesGuy on April 06, 2010, 03:15:21 PM
I absolutely know what you are talking about. I have been landscaping/mowing/cutting brush for the past week. It has been in the 80’s here too, and I felt every degree of it.
Yesterday was the worst. I got absolutely exhausted, like I was out of breath or something. I felt dizzy, and then I got a massive headache which basically lasted the remainder of the day. I was digging in our front porch to get up weeds, and I had to stop every few seconds and rest.
Luckily, I did sweat though later, and my hives haven’t bothered me all week.
But I do think we all have an increased risk of heat strokes/heat exhaustion since we have a difficult time sweating. Sweat helps cool the body tremendously, and since we don’t sweat a lot, it makes us more prone to symptoms of heat.
So yes, I have experienced what you are describing just yesterday.
Also, make sure the medicine you are taking isn’t doing something too. You may want to google side effects or talk to your doctor just to be safe, to make 100% sure it isn’t the meds doing it.
Yesterday was the worst. I got absolutely exhausted, like I was out of breath or something. I felt dizzy, and then I got a massive headache which basically lasted the remainder of the day. I was digging in our front porch to get up weeds, and I had to stop every few seconds and rest.
Luckily, I did sweat though later, and my hives haven’t bothered me all week.
But I do think we all have an increased risk of heat strokes/heat exhaustion since we have a difficult time sweating. Sweat helps cool the body tremendously, and since we don’t sweat a lot, it makes us more prone to symptoms of heat.
So yes, I have experienced what you are describing just yesterday.
Also, make sure the medicine you are taking isn’t doing something too. You may want to google side effects or talk to your doctor just to be safe, to make 100% sure it isn’t the meds doing it.
Title: Re: My Story Post by: silvertones on April 07, 2010, 04:28:14 AM
Interesting! No it’s not the meds they have very low side effects and I wasn’t taking them last summer. Looks like when I need to work out side I put on the bathing suit and carry around the water hose.
Title: Re: My Story Post by: silvertones on April 08, 2010, 03:03:16 PM
What we all technically have is called miliaria , blocked sweat pores, and there are 3 levels. I have treated the trigger, strees, with drugs and am now on the treatment for the cause. I’m on this like a dog after a bone. Per the above article anhydrous lanolin is succesful in clearing up the blocked pores and and bringing back sweating. I’ve got a pound of it coming to me from online. $30 plus ship
Title: Re: My Story Post by: HivesGuy on April 10, 2010, 01:23:45 PM
Thanks for that info silvertones.
I have speculated in past blog posts about sweat gland occlusion, but in all honesty, I am not sure if that is what we have after some of my experiments. The 2 main problems with this theory that I realized in the past were:
1. Miliaria is self limiting–nearly all forms of miliaria are self limiting, and go away in a mere few weeks in most cases. Cholinergic Urticaria, can persist for years and years. 2. We can actually sweat–Miliaria is a sweat pore occlusion, typically by bacteria. This poses a few problems because most of us can actually sweat (granted after a merciless attack). I know I can sweat on really hot days as I have done recently.
Also, it seems that if this was bacterial in nature, simple antibiotics would cure it. However, many of us have been on antibiotics since having this, with no results at all. Furthermore, I have applied bleach to my skin at one point (long story-don’t try it), and loads of other lotions/creams, etc. with no benefits.
So those two factors alone lead me to believe this resembles Miliaria, but is something different. My guess is that the acetycholine stimulates nerve endings and this causes our immune system mast cells to freak out. So it would be more internal in that idea. But Miliaria and Cholinergic Urticaria do have nearly the same symptoms, perhaps because the blocked sweat pores also causes mast cell degranulation or something??
However, that lotion may help you some, and it is certainly worth a shot to test the theory. I swear it seems like one of the lotions I tried in the past had lanolin in it, but maybe I am mistaken. In any event, keep us posted on your results, and best of luck to you.
Keep us posted and good luck!
I have speculated in past blog posts about sweat gland occlusion, but in all honesty, I am not sure if that is what we have after some of my experiments. The 2 main problems with this theory that I realized in the past were:
1. Miliaria is self limiting–nearly all forms of miliaria are self limiting, and go away in a mere few weeks in most cases. Cholinergic Urticaria, can persist for years and years. 2. We can actually sweat–Miliaria is a sweat pore occlusion, typically by bacteria. This poses a few problems because most of us can actually sweat (granted after a merciless attack). I know I can sweat on really hot days as I have done recently.
Also, it seems that if this was bacterial in nature, simple antibiotics would cure it. However, many of us have been on antibiotics since having this, with no results at all. Furthermore, I have applied bleach to my skin at one point (long story-don’t try it), and loads of other lotions/creams, etc. with no benefits.
So those two factors alone lead me to believe this resembles Miliaria, but is something different. My guess is that the acetycholine stimulates nerve endings and this causes our immune system mast cells to freak out. So it would be more internal in that idea. But Miliaria and Cholinergic Urticaria do have nearly the same symptoms, perhaps because the blocked sweat pores also causes mast cell degranulation or something??
However, that lotion may help you some, and it is certainly worth a shot to test the theory. I swear it seems like one of the lotions I tried in the past had lanolin in it, but maybe I am mistaken. In any event, keep us posted on your results, and best of luck to you.
Keep us posted and good luck!
Title: Re: My Story Post by: luckyjoej on April 11, 2010, 02:12:52 PM
What we all technically have is called miliaria , blocked sweat pores, and there are 3 levels. I have treated the trigger, strees, with drugs and am now on the treatment for the cause. I’m on this like a dog after a bone. Per the above article anhydrous lanolin is succesful in clearing up the blocked pores and and bringing back sweating. I’ve got a pound of it coming from
www.planetrx.com. $30 plus ship
www.planetrx.com. $30 plus ship
Hi SIlvertones, thanks for posting, I hope all is well with you. I like you get the hives when i get nervous and also when I heat up. I am hoping to go to a doctor and get this treated
Title: Re: My Story Post by: Dansla on April 24, 2010, 08:20:34 AM
Some very interesting posts here, but I am now starting to wonder if I have been misdiagnosed as my hives appear on a daily basis, be they the odd red dot or a full blown stung by a swarm of bees reaction! I have had this condition for 15 years now though and it has always been there. Granted, for the first 14 years it pretty much only came out if I was playing sports or in a hot environment (I live in Newcastle, England so that doesn’t happen too often). Now though I am getting them if I feel uncomfortable in a social environment or if my heart rate increases slightly eg. my 18 month old son was about to fall and I instinctively reached to catch him, I then felt the pins and needles feeling in my lower back (something that seems to occur since I have been experimenting with different medications and 2 minutes later I was covered. With time it has also started to spread onto my neck and now forehead! As I say, it just seems to be getting worse and worse. I often to present to large groups and worrying about my Cholinergic Urticaria (if, indeed that is what it is) was never an issue in the past, in the last month or so though, it is a constant concern.
Title: Re: My Story Post by: silvertones on April 25, 2010, 04:26:45 AM
I’m still doing fine on the meds. Now I need to work on the sweating so i don’t get overheated in the sun and get heat stroke. I’ve started with my concoction of Anhydrous Lanolin. I sweated the other day for the first time in ? 2 years. It’s still to early to tell. The recipe if you want to try it. 1 part Anhydrous Lanolin USP 1 part coconut oil 2 parts sweet almond oil 2 parts very cold water
You can put in some essential oil for fragrance but I prefer that wet sheep smell myself.
Melt the first three ingredients in a sauce pan over low heat. Remove from burner. Dump in the water and whip up with a wire whisk. Put in the freezer to cool down occasionally removing and whipping up. Once cooled put in a suitable container. Apply lightly all over.
You can put in some essential oil for fragrance but I prefer that wet sheep smell myself.
Melt the first three ingredients in a sauce pan over low heat. Remove from burner. Dump in the water and whip up with a wire whisk. Put in the freezer to cool down occasionally removing and whipping up. Once cooled put in a suitable container. Apply lightly all over.
Title: Re: My Story Post by: silvertones on April 30, 2010, 01:35:14 PM
I live in the NC mountains. My house is at the bottom. Couldn’t afford the one at the top. I’ve been putting on my cream and hiking to the top each day. On sunny days it’s mostly sun. I’ve been sweating like a pig. Just thought I’d keep you all posted.
I know some may think that I’m a troll and posting false info but I’m not. I’m just obsessed. This was ruling and ruining my life.
I know some may think that I’m a troll and posting false info but I’m not. I’m just obsessed. This was ruling and ruining my life.
Title: Re: My Story Post by: silvertones on May 15, 2010, 04:53:22 AM
I’m not cured however the symptoms are gone.
Title: Re: My Story Post by: silvertones on June 29, 2010, 02:00:40 PM
I said I’d keep you all posted. It’s been 4 months since I started on the drug and my lanolin concoction and have had really no symptoms. I walk 2 miles in the AM on flat ground even in the 95 degree heat and in the afternoon I walk a mile up the mountain road i live on. I sweat profusely and never have the slightest itch or feeling I’m going to pass out as I used to.
Title: Re: My Story Post by: manicat on June 29, 2010, 02:22:24 PM
I get super excited about stuff, and get a massive adrenaline rush. I also tend to get extraordinarily worried about stuff. I tend to have a lot of anxiety. This used to manifest itself as really sweaty palms and armpits. Until the hives came, that is.
This is the key that will unlock the door for us. It is the common issue.
Silvertones thank you for directing me to this thread. I also believe my hives is caused by stress. I’ve gotten panic attacks since I was 11 and haven’t had one since I started getting hives 2 months ago. Is my skin getting a PA? I’ve never had trouble sweating though… always sweat a LOT and still do. In my case I don’t see a connection between sweating and hives. But the stress, definitely… anxiety brings them on or makes them worse, as does anger, worry, etc. Interestingly, positive adrenaline rushes… or what I perceive to be positive… like dancing to a great band… stops the hives in their tracks.
Silvertones how much gabapentin do you take? My husband takes a low dose (200mg/day) for back pain and swears it works. And my doctor is very open to experimenting with different drugs.
The concoction that relieves my symptoms for a few hours is a cool shower with oatmeal soap followed by smearing paste made with baking soda and a little water on the hives, which I brush off after it dries (10 minutes or so) followed by a rosewater spritz. Does your concoction make you sweat more or just calm the hives? Because I think I’m sweaty enough LOL!
Title: Re: My Story Post by: silvertones on June 30, 2010, 08:40:21 AM
I’m taking 2400mg per day of Gabapentin. I worked myself up until it all went away and this is the dose I leveled off at. My concoction helped, or so it seemed, to bring on the sweating and keep the pores clean. As Hives Guy said we are all different so what works for me may not work for you.. But it might. Good luck.
Title: Re: My Story Post by: manicat on June 30, 2010, 10:32:47 AM
Thanks Silvertones. I’m to talk to my doc about it.
Title: Another member for the club Post by: wyattroa on August 24, 2010, 11:06:17 PM
Well, I don’t really know where to begin, but I will try. This past February I was doing physical therapy for my back. I had injured my back on the job at a car accident, I am a paramedic. While doing therapy I would get this feeling of pins and needles happening all over my body, if I did not stop what I was doing it would get worse. 4 weeks later I was unable to do any more therapy because I would get this feeling, but now I had severe pain associated with this feeling. This has been getting progressively worse since February. My doctors initially thought it might be due to the new medication I was put on, which was Gabapentin. They took me off this medication for a month to see if there was any change, there was none. I decided to go to a derm doctor and see if they could figure this out. The doctor diagnosed me with cholinergic urticaria.
Since this diagnosis doctors have tried putting me on anti-histamines which do not help. They have now increased my dose of gabapentin to 3600mg a day. This is the max a person should be on. I have not been able to function as normal person since May. These attacks make my body feel as if I am literally being stabbed all over, I can’t help but to yelp out in pain and at times cry. Now I have a large pain tolerance, I have had broken bones, big cuts, and other medical procedures that never made me cry. This pain is excruciating, when the attacks get real bad i have to put 2 fans on me to cool me down, also along with the fans my wife puts ice packs on my back, chest, and wrists. This has gotten to the point where I can not even walk from my basement to my bedroom which is on the second floor without triggering an attack. I have spent a total of around 12 hours outside this entire summer. I have missed family parties, baseball games, meeting with friends, playing with the dogs, and just spending time with my wife.
The part that scares me the most about this is that I am completely helpless at this point. Doctors can not understand why I am reacting this bad. If I go from any room where there is a temperature change to warmer climate I have an attack, and physical activity gives me an attack, I can’t even walk to the mailbox to get our mail. This happens when I get nervous, scared, embarrassed, ect. I have been unable to work due to this condition and how sever it is, I am no longer able to drive my car since the attacks happen so frequently and so quickly. I have had 2 close calls this past month trying to drive and no longer want to take that risk or possibly hurt someone else on the road. My aunt recently purchased a cooling vest for me to see if this is something that can help me out. Since I am unable to work, money has become a very hard thing. We are now only on my wives paycheck and the bills are harder and harder to pay.
On top of all this my wife is due with out first child to be born in November. I am excited to be a father but am so afraid I wont be able to care of my child. I can’t even walk to the other room without and attack happening. How am I going to care for a baby when I can’t even provide for my family. This should be a fun and exciting time for my wife and I and its not. We can’t even go look at baby stuff together in the store since I will get an attack from just walking from the car to the store. I want to be a great father, but if this continues to go the route that it is going then I’m not sure how I will do that. It is so hard to think positive when these attacks happen every day. I try to explain to people how sever the pain is to me and they just cant understand. I have no quality of life right now. I can’t do anything on my own. I will wake up in the middle of the night with severe attacks. Every morning I wake up my hands and feet are tingling an itching instantly. I feel utterly hopeless.
Sorry for the long post, but it feels good to get it out.
Robert
Since this diagnosis doctors have tried putting me on anti-histamines which do not help. They have now increased my dose of gabapentin to 3600mg a day. This is the max a person should be on. I have not been able to function as normal person since May. These attacks make my body feel as if I am literally being stabbed all over, I can’t help but to yelp out in pain and at times cry. Now I have a large pain tolerance, I have had broken bones, big cuts, and other medical procedures that never made me cry. This pain is excruciating, when the attacks get real bad i have to put 2 fans on me to cool me down, also along with the fans my wife puts ice packs on my back, chest, and wrists. This has gotten to the point where I can not even walk from my basement to my bedroom which is on the second floor without triggering an attack. I have spent a total of around 12 hours outside this entire summer. I have missed family parties, baseball games, meeting with friends, playing with the dogs, and just spending time with my wife.
The part that scares me the most about this is that I am completely helpless at this point. Doctors can not understand why I am reacting this bad. If I go from any room where there is a temperature change to warmer climate I have an attack, and physical activity gives me an attack, I can’t even walk to the mailbox to get our mail. This happens when I get nervous, scared, embarrassed, ect. I have been unable to work due to this condition and how sever it is, I am no longer able to drive my car since the attacks happen so frequently and so quickly. I have had 2 close calls this past month trying to drive and no longer want to take that risk or possibly hurt someone else on the road. My aunt recently purchased a cooling vest for me to see if this is something that can help me out. Since I am unable to work, money has become a very hard thing. We are now only on my wives paycheck and the bills are harder and harder to pay.
On top of all this my wife is due with out first child to be born in November. I am excited to be a father but am so afraid I wont be able to care of my child. I can’t even walk to the other room without and attack happening. How am I going to care for a baby when I can’t even provide for my family. This should be a fun and exciting time for my wife and I and its not. We can’t even go look at baby stuff together in the store since I will get an attack from just walking from the car to the store. I want to be a great father, but if this continues to go the route that it is going then I’m not sure how I will do that. It is so hard to think positive when these attacks happen every day. I try to explain to people how sever the pain is to me and they just cant understand. I have no quality of life right now. I can’t do anything on my own. I will wake up in the middle of the night with severe attacks. Every morning I wake up my hands and feet are tingling an itching instantly. I feel utterly hopeless.
Sorry for the long post, but it feels good to get it out.
Robert
Title: Re: Another member for the club Post by: HivesGuy on August 25, 2010, 03:53:56 AM
Hey Robert
–Wow–Excellent post and welcome to the forum. Don’t ever apologize for a long post—because I enjoy reading them (and I suspect others do too), plus it is very good to get out your frustrations (and with Cholinergic Urticaria, we tend to have lots of those).
I can’t tell you how much I can relate to your post. Lately, my hives have been extremely sensitive too. I can’t weedeat, mow my yard, or anything. I have to stop and get my poor wife to finish mowing or whatever, and I come in scratching my self to death and irritated. She has done virtually all of the shopping lately too.
It is also odd that you mentioned your hands and feet tingling in the morning. I have noticed the back of my hands and tops of my feet feeling prickly/itchy lately too–but the funny thing is that it only happens when I first wake up. After an hour or so, it stops for the day.
I can also relate about the child thing. My wife desparately wants kids someday, but I feel every single thing you feel. How can I be the father I want to be, when I can’t even mow my yard? So I can totally relate with your feelings about that. But, congrats on the news, and I think you should try (and yes, I know it is hard), to be as optimistic as you can. Maybe the hives will go away within a year or two for good, and it won’t interfere with your parenting. Hang in there.
As far as treatments, I don’t really know what to say. I generally avoid the “heavy duty” treatments, because I worry about side effects or long term problems. You say you have tried antihistamines with no luck–some of us manage it okay on antihistamines, and some don’t. I have noticed they help a little. Most people on here seem to get the most benefit from Allegra (fexofenadine.) Zyrtec is the next best one it seems. But it certainly won’t cure it.
The only other serious treatment I know of is corticosteroids–which, of course, are very serious. They can have terrible side effects over time. But they could potentially knock down an attack for a few months or even years. When I first got Cholinergic Urticaria, mine got out of control (kinda like they are getting lately). I went to the dermatologist, and he gave me a steroid shot. I never knew what it was, and I didn’t think it worke at all. But looking back, it may have been something called “Kenalog.” It is a slow release corticosteroid that is injected in the rear end.
I think this may have had a role in my 2 year remission looking back, but I can never be sure. It does seem to have serious side effects though (although I can’t say that I really remember getting any).
Anyway, welcome to the forum, and thanks again for that great post.
–Wow–Excellent post and welcome to the forum. Don’t ever apologize for a long post—because I enjoy reading them (and I suspect others do too), plus it is very good to get out your frustrations (and with Cholinergic Urticaria, we tend to have lots of those).
I can’t tell you how much I can relate to your post. Lately, my hives have been extremely sensitive too. I can’t weedeat, mow my yard, or anything. I have to stop and get my poor wife to finish mowing or whatever, and I come in scratching my self to death and irritated. She has done virtually all of the shopping lately too.
It is also odd that you mentioned your hands and feet tingling in the morning. I have noticed the back of my hands and tops of my feet feeling prickly/itchy lately too–but the funny thing is that it only happens when I first wake up. After an hour or so, it stops for the day.
I can also relate about the child thing. My wife desparately wants kids someday, but I feel every single thing you feel. How can I be the father I want to be, when I can’t even mow my yard? So I can totally relate with your feelings about that. But, congrats on the news, and I think you should try (and yes, I know it is hard), to be as optimistic as you can. Maybe the hives will go away within a year or two for good, and it won’t interfere with your parenting. Hang in there.
As far as treatments, I don’t really know what to say. I generally avoid the “heavy duty” treatments, because I worry about side effects or long term problems. You say you have tried antihistamines with no luck–some of us manage it okay on antihistamines, and some don’t. I have noticed they help a little. Most people on here seem to get the most benefit from Allegra (fexofenadine.) Zyrtec is the next best one it seems. But it certainly won’t cure it.
The only other serious treatment I know of is corticosteroids–which, of course, are very serious. They can have terrible side effects over time. But they could potentially knock down an attack for a few months or even years. When I first got Cholinergic Urticaria, mine got out of control (kinda like they are getting lately). I went to the dermatologist, and he gave me a steroid shot. I never knew what it was, and I didn’t think it worke at all. But looking back, it may have been something called “Kenalog.” It is a slow release corticosteroid that is injected in the rear end.
I think this may have had a role in my 2 year remission looking back, but I can never be sure. It does seem to have serious side effects though (although I can’t say that I really remember getting any).
Anyway, welcome to the forum, and thanks again for that great post.
Title: Gabapentin (Neurontin) For Cholinergic Urticaria? Post by: wyattroa on August 25, 2010, 10:25:57 AM
Just wondering if anyone is taking Gapapentin with this condition. I am on a pretty high dose of this stuff. I have tried 4 different anti histamines and they have not helped. Anyone else taking this med that I can relate with? Robert
Title: Re: Gabapentin Post by: silvertones on August 26, 2010, 10:58:16 AM
Yep. No one seemed to believe me so I stopped posting.
Title: Re: My Story Post by: silvertones on August 26, 2010, 11:07:06 AM
Still taking the Gabapentin . tried stopping and after a day I started with the pins/needles/burning in my feet. Still sweating quite well. No issues at all.
Title: Re: My Story Post by: manicat on August 26, 2010, 11:25:03 AM
Congrats silvertones! The gabapentin didn’t work for me but my doc and I found a combination that does. First he added hydroxyzine hcl 25mg. I still was itchy, but not nearly as much. I have to take 4 per day because the effect wears off every 6 hours or so. Then a blood test showed a slightly underactive thyroid, probably due to the anti-manic meds I take, so he put me on 50 mcg levothyroxine and after a couple of days the hives totally disappeared 🙂
Title: Re: Gabapentin Post by: wyattroa on August 26, 2010, 12:32:12 PM
It does help me, but not to the full effect. I still get the tingling and pins and needles feeling, severe itchiness, and pain. But, if I dont take it the attacks are able to go full blown.
I see your taking 2400mg for one day. My doctor just upped me to 1800mg in the morning and then 1200mg in the evening and then again 1200mg at night. I dont become tired or anything from this. I just need something else so that I can actually be a normal person. Right now I cant even leave my house. Robert
I see your taking 2400mg for one day. My doctor just upped me to 1800mg in the morning and then 1200mg in the evening and then again 1200mg at night. I dont become tired or anything from this. I just need something else so that I can actually be a normal person. Right now I cant even leave my house. Robert
Title: Re: Gabapentin Post by: HivesGuy on August 28, 2010, 04:56:06 AM
I believed ya silvertones. The only problem is, it probably won’t work for everyone (as wyattroa) pointed out, and it seems to have a lot of undesired potential problems according to most studies I read.
What I believe is that everyone should do what works for them, and what they feel comfortable with. Some people on this forum seemed to be cured from vitamin d, you seem to have managed yours with that med, others with antihistamines, others with steroids, others with hormone or thyroid therapy, others with UVB therapy, etc.
There doesn’t seem to be one cure-all for this thing (unfortunately).
What I believe is that everyone should do what works for them, and what they feel comfortable with. Some people on this forum seemed to be cured from vitamin d, you seem to have managed yours with that med, others with antihistamines, others with steroids, others with hormone or thyroid therapy, others with UVB therapy, etc.
There doesn’t seem to be one cure-all for this thing (unfortunately).
Title: Re: Gabapentin Post by: silvertones on August 28, 2010, 05:08:18 AM
I’ve thought tis for quite some time. I think the common issue here, whether some want to admit it or not, is that psychologically we are all just a little off kilter in some way. Our emotions are triggering some chemical issue. For me the Gab must balance me. The other person on my original post already takes drugs for manic issues so that might be why it doesn’t work. When I said know one believed me what I meant was that if they approach their Docs and mention emotions they may find something that works.As far as side effects of Gab from what I’ve read they’re pretty benign.I exhibit none.
Title: Re: My Story Post by: Cass58 on October 10, 2010, 10:35:24 PM
A funny thing happened to me yesterday: I was walking in walmart with my wife, and they had the heat system up really high (which is unusual for that particular store). I was fine, but I could feel that my body was heating up. I thought I would make it, but I knew I was skating on a fine line.
Then, it just so happened that my wife ran into someone she knew from work. I had to introduce myself, and I was totally caught off guard (we usually never see anyone we know there). Because it sort of surprised me for a second, this caused a quick spike of acetylcholine/adrenaline, and it sent my hives off. So while my wife was talking to her friend, I was trying to be as inconspicuous as possible while scratching myself. I eventually had to just give my wife the credit card and go sit in the car. I was so frustrated.
What is even more frustrating is that people have no idea what torture I am feeling as I sit there and try to appear normal…
Then, it just so happened that my wife ran into someone she knew from work. I had to introduce myself, and I was totally caught off guard (we usually never see anyone we know there). Because it sort of surprised me for a second, this caused a quick spike of acetylcholine/adrenaline, and it sent my hives off. So while my wife was talking to her friend, I was trying to be as inconspicuous as possible while scratching myself. I eventually had to just give my wife the credit card and go sit in the car. I was so frustrated.
What is even more frustrating is that people have no idea what torture I am feeling as I sit there and try to appear normal…
Wow… almost the EXACT thing happened to me the other day. We were even at WALMART too! Haha. My husband and I ran into someone we knew, and it caught me off guard… so of course, I broke out. It is so embarrassing having to explain to my husband that I break out when I have to talk to people. Ugh. I usually am a very outgoing person, or at least most people perceive me as such. But lately, I would rather just be alone, or only talk to a couple people at a time. The hives are killing me.
Title: Re: My Story Post by: HivesGuy on October 11, 2010, 03:25:21 AM
Really, lol. That is funny. Another thing like this happened about a couple of weeks ago. I don’t know if you heard, but walmart had a global meltdown on their credit card machines for about a day. My wife and I spent all that time shopping, and then got to the self checkout. We scanned all our groceries, placed them in the cart, and proceeded to checkout.
At that point, the cashier for the checkout machines lets us know that they credit card machines are down. Seriously. No warnings. No announcements. No signs. She waited until we had done everything to tell us. I immediately broke out in hives from the frustration and awkwardness of talking to them. I looked at my wife and I said, “I have to go outside…NOW.”
I then went to the car were I scratched myself for about 5 minutes until the car AC got it cool enough to stop the hives. Just another day in the lives of a Cholinergic Urticaria sufferer I suppose…
At that point, the cashier for the checkout machines lets us know that they credit card machines are down. Seriously. No warnings. No announcements. No signs. She waited until we had done everything to tell us. I immediately broke out in hives from the frustration and awkwardness of talking to them. I looked at my wife and I said, “I have to go outside…NOW.”
I then went to the car were I scratched myself for about 5 minutes until the car AC got it cool enough to stop the hives. Just another day in the lives of a Cholinergic Urticaria sufferer I suppose…
Title: Re: My Story Post by: silvertones on October 13, 2010, 10:27:16 AM
More from me. The Gaba continues to do it’s job by removing 95% of my symptoms. This summer starting around May I started walking to the top of the mountain I live on via the road. It’s about 2 miles round trip. I would sweat like a pig. At that point the symptoms completely went away. It’s starting to get cool and I don’t sweat as much so I started to go back to that 95%. I stopped the Gaba for a day (experiment) and WHOA right back to square one. I of coarse went right back on it. So I put a black garbage bag over myself and I was able to severally sweat. No more itching. I know it feels great to get in the cool when the itch comes on but the key is to stay calm and get yourself sweating hard on a daily basis. Works for me.
Title: Re: My Story Post by: silvertones on October 13, 2010, 02:28:38 PM
PS gonna trade in the trash bag for a sauna suit.
Title: Re: My Story Post by: HivesGuy on October 14, 2010, 11:47:11 AM
Thanks for that update silvertones. I am glad to hear that you are still getting relief from your treatment regimen, and I am sorry to hear that the hives came back as soon as you stopped it. Bummer. But at least this seems to be working fairly well for you right now.
I am so glad cooler weather is coming, because I will be virtually hives free for the winter. The only risks I have in breaking out is when shopping if they have the heater cranked up. Otherwise, I keep my house chilly during the fall/winter/spring.
I am so glad cooler weather is coming, because I will be virtually hives free for the winter. The only risks I have in breaking out is when shopping if they have the heater cranked up. Otherwise, I keep my house chilly during the fall/winter/spring.
Title: Re: My Story Post by: silvertones on October 16, 2010, 05:58:44 AM
I bought an $8.00 Sauna Suit from Wally world. It really works if the need to sweat is your issue.
Title: Re: My Story Post by: Rogerq23 on October 17, 2010, 03:15:42 PM
Wao nice thread…
I’ll post my response about the topics that i read at the beginning of this thread People think I am talkative and also not introverted, but I think and I know im introverted and mostly shy. I can hang out and talk to a lot of people that i really know. I have a lot of friends but it doesn’t make me extroverted.
It is funny what doctors told you when you go to an appointment some of them doesn’t even know about this illness and they tell that you have a nerve problem or basically learn to deal with your emotions. This reminds me of some people and friends that are not acknowledged with this condition and when they see me with the rash and bumps and I explain to them they look at me like I am crazy or there is not such a condition like this that u get allergy cuz of the heat or sweat or whatever.
As some of you posted the story about meeting some people in Wal-mart sometimes in college i have to discuss to someone i dont really know about a topic that i dont even know and I am not that fluent to make things up cuz English is not my first language that make my hives come out… I just wanna walk out of the class but i cant… the person is talking to me or waiting my response :S
Hivesguys said he hasnt got the pins/prickly sensation, I do… as well as silverstone… i guess that is the worst part of this… if i dont have any of this prickly sensation it will definitely feel better… 80% better
I’ll post my response about the topics that i read at the beginning of this thread People think I am talkative and also not introverted, but I think and I know im introverted and mostly shy. I can hang out and talk to a lot of people that i really know. I have a lot of friends but it doesn’t make me extroverted.
It is funny what doctors told you when you go to an appointment some of them doesn’t even know about this illness and they tell that you have a nerve problem or basically learn to deal with your emotions. This reminds me of some people and friends that are not acknowledged with this condition and when they see me with the rash and bumps and I explain to them they look at me like I am crazy or there is not such a condition like this that u get allergy cuz of the heat or sweat or whatever.
As some of you posted the story about meeting some people in Wal-mart sometimes in college i have to discuss to someone i dont really know about a topic that i dont even know and I am not that fluent to make things up cuz English is not my first language that make my hives come out… I just wanna walk out of the class but i cant… the person is talking to me or waiting my response :S
Hivesguys said he hasnt got the pins/prickly sensation, I do… as well as silverstone… i guess that is the worst part of this… if i dont have any of this prickly sensation it will definitely feel better… 80% better
Title: Re: My Story Post by: HivesGuy on October 20, 2010, 04:36:35 AM
Quote
Hivesguys said he hasnt got the pins/prickly sensation, I do… as well as silverstone… i guess that is the worst part of this… if i dont have any of this prickly sensation it will definitely feel better… 80% better
Just to add more detail—I do actually get pins and pricks all over my body. It is by far the worst part of Cholinergic Urticaria for me. What I meant was that I didn’t get them only on my hands/feet.
What is strange, is that now I will often develop a prickly sensation on my wrists, back of my hands, and on the tops of my feet–sometimes before I get them anywhere else on my body. However, it doesn’t occur on the soles of my feet or my palms. But it also happens on my body too.
But now it seems as if it usually starts on my wrists and bottom of my legs. It is strange. But I definitely always get that dreaded prickly/tingling/burning/itching sensation with my hives each and every time, and that is what drives me mad.
Title: Re: My Story Post by: silvertones on October 22, 2010, 12:43:18 PM
Quote
Hivesguys said he hasnt got the pins/prickly sensation, I do… as well as silverstone… i guess that is the worst part of this… if i dont have any of this prickly sensation it will definitely feel better… 80% better
Just to add more detail—I do actually get pins and pricks all over my body. It is by far the worst part of Cholinergic Urticaria for me. What I meant was that I didn’t get them only on my hands/feet.
What is strange, is that now I will often develop a prickly sensation on my wrists, back of my hands, and on the tops of my feet–sometimes before I get them anywhere else on my body. However, it doesn’t occur on the soles of my feet or my palms. But it also happens on my body too.
But now it seems as if it usually starts on my wrists and bottom of my legs. It is strange. But I definitely always get that dreaded prickly/tingling/burning/itching sensation with my hives each and every time, and that is what drives me mad.
It sure is the worse thing and very much dreaded. Well here goes. I’ve stopped taking the drug as of today. Now that the cold weather has settled in I want to see what happens. I started taking it in the Spring when the weather was warming up and I also started exercising.My real hope is that it wasn’t the drug but the exercise. i don’t like taking anything but I’ll eat them by the handfull if that’s what it takes.
Title: Re: My Story Post by: silvertones on October 24, 2010, 01:10:32 PM
The Gabapentin most definitely helps. I think it’s an issue of keeping my anxiety down. Now the cool weather is here I’m back to the 90-95% symptom free. I want to be 100% like this summer so I’ve been trying to analyze the differences. 1. This summer was very hot and I sweated not only during my exercise periods but during the day and at night. I don’t use AC even though our heat index was up to 103. 2.It was so hot I took cold showers
I am using the sauna suit and it helps but still not 100% then I realized that because it was cold now I’d take hot showers. this was mentioned by someone else. I started back with cold showers and am almost back to 100%. Time to whip up a batch of my sweat creme also to get those pores open. That’s it for now. BTW I read at the NIH site that there’s no cure for this only symptom relief.
I am using the sauna suit and it helps but still not 100% then I realized that because it was cold now I’d take hot showers. this was mentioned by someone else. I started back with cold showers and am almost back to 100%. Time to whip up a batch of my sweat creme also to get those pores open. That’s it for now. BTW I read at the NIH site that there’s no cure for this only symptom relief.
Title: Re: My Story Post by: silvertones on December 08, 2010, 06:31:43 AM
I still come to this site so I’m not cured by a long shot. The weather has turned very cold here and I am no longer able to find a situation were I can sweat on a daily basis. Stress as I mentioned is a big trigger for me. The Gabapentin I take worked quite well on keeping me calm. The drug is marginal in t’s ability to do this. It appears also that this effect is wearing off. I’m not as symptom free as I’d like. It does appear that histamine build up and the ability to get rid of it may be the REAL problem with us. In NC winter is short so I’m waiting for summer to get hear.
Title: Re: My Story Post by: HivesGuy on December 08, 2010, 06:42:08 AM
Yeah, I think that diet can definitely help Cholinergic Urticaria, although I’m not sure if it will cure it. I have came across that article in the past as well, and it is a very good article. I think everyone on this site should take a look and check their current diets against it.
The funny thing is, this summer is when my hives got out of control. My diet was super high on fried potatoes, canned salmon, tomatoes, ketchup, and spinach. Exactly the stuff I should have been avoiding.
Sorry to hear the hives are getting a bit worse. It is definitely frustrating–I know. Hang in there. Hopefully summer will be here soon enough.
The funny thing is, this summer is when my hives got out of control. My diet was super high on fried potatoes, canned salmon, tomatoes, ketchup, and spinach. Exactly the stuff I should have been avoiding.
Sorry to hear the hives are getting a bit worse. It is definitely frustrating–I know. Hang in there. Hopefully summer will be here soon enough.
Title: Re: My Story Post by: silvertones on December 20, 2010, 07:01:42 AM
I’ve decided to take myself off the Gabapentin. It isn’t doing what it used to. Coming off slowly so as not to cause problems. My next step is the diet & Bitter Orange. Can’t wait for summer though as the heavy exercise and sweating made it go away. I hate exercise though slightly less then itching & burning. Isn’t this fun? >:(
Title: Re: My Story Post by: Express724 on December 20, 2010, 11:13:30 AM
I finally feel like I’m not insane. Up until today I had no idea what Urticaria was or that I suffered from it. I had sever symptoms as a child that lasted for years. We lived in Mississippi at the time and I would wake up and be completely covered in hives mainly around my stomach. Later around the age of 10 we moved to Illinois and my symptoms stopped completely, and now at the age of 26 they are back. It becomes near impossible for me to sleep and I recently realized that I have to take action as it looks as though my thighs have been clawed at. I am really looking forward to some helpful remedies from people suffering from the same thing.
Thanks, Chris
Thanks, Chris
Title: Re: My Story Post by: HivesGuy on December 23, 2010, 04:48:10 PM
Hey Chris,
Thanks for your post and welcome to the forum. Yes, you are not crazy and we all often feel as if we are crazy or something. I hope you find the forum helpful. Although there really isn’t a cure-all pill, you may find some relief with antihistamines. Also, this forum has a lot of great tips that members have contributed, so be sure to read up and find out as much as you can.
I hope you hives get better soon.
Thanks for your post and welcome to the forum. Yes, you are not crazy and we all often feel as if we are crazy or something. I hope you find the forum helpful. Although there really isn’t a cure-all pill, you may find some relief with antihistamines. Also, this forum has a lot of great tips that members have contributed, so be sure to read up and find out as much as you can.
I hope you hives get better soon.
Title: Re: My Story Post by: silvertones on February 08, 2011, 06:16:00 AM
What a weird illness. After a couple of weeks off the Gabapentin I started having the REAL Bad attacks like I used to get. I get extreme pins & needles, burning, itching and worst of all I get this feeling of extreme agitation almost like a panic attack were I feel I may pass out. Not good when I’m driving. Have to stop and turn the A/C on full blast to try and calm down. When back on the pills.Back to being fairly OK. I even have taken the plunge and gone back to work. I’m a solo Musician and took 2 gigs each week. I didn’t know what to expect. To my surprise while on stage I never had a single episode. This made me VERY happy. Having something like this seems to also help my overall mood and thus reduces any symptoms. Just in case someone is wondering. I’ve been a pro musician for 45 years so playing music is not stressful. It’s very relaxing. Right now being winter so no sweating and the places I play being warm I do get a little itchy carrying in all my equipment and getting it set up. I give myself an hour to relax once I’m set. BTW The sauna suit helped during the fall when it was still a little warm but once it got cold nothing. My problem is that I can’t exercise hard enough, do to breathing, to get a sweat going. I need the summer heat to help me along. Going to be 60 this weekend. Summers just around the corner.
Title: Re: My Story Post by: HivesGuy on February 10, 2011, 09:14:03 AM
That is great how you didn’t have an attack during your time on stage! Wow, that is awesome you are a musician. I always wished I could have learned to play an instrument or sing–but I can’t do either.
Yeah, the same thing is true for me with the sauna suit. I bought one, but it didn’t help me sweat at all. But maybe when the humidity is up and it is hot it will work better.
Yeah, the same thing is true for me with the sauna suit. I bought one, but it didn’t help me sweat at all. But maybe when the humidity is up and it is hot it will work better.
Title: Re: My Story Post by: Brazen on February 11, 2011, 05:24:50 AM
Strangely enough, I’ve only just thought about this, my hives started soon after I got engaged….I don’t consider myself to be someone who is easily stressed, but maybe it’s a subconcious thing. Maybe when I get married the torture will be over. (or is it just beginning……I jest….)
Title: I haven’t posted for some time Post by: silvertones on November 13, 2011, 04:01:24 PM
Anyone interested can do a search of me to get my story. for those of you that remember me I’m still well controlled using Gabapentin as prescribed by my original Dr. The funny thing is he retired and I went to a new Doc a couple weeks ago and explained my situation. She is a young Doc and knew exactly what I was talking about. She said that the Gabapentin is a good drug for this as it evens out your mental state as well as calming the nerves of the extremities. I’m hoping in time it will go away. I’ve been under a lot of stress. My wife had been fighting breast cancer for 20 years and it came back 3 years ago in a bad way. That’s when my condition came back. She passed away in Sept. so I have new things to deal with however at least I’m not watching her suffer.
Title: Re: I haven’t posted for some time Post by: HivesGuy on November 13, 2011, 04:13:23 PM
Silvertones,
Thanks so much for the update. I am pleased to hear that your medication is still helping you. That is great news.
I am so, so, so, so sorry to hear about your wife passing. My thoughts and prayers are with you and your family. I hope you can find the strength to move forward during this difficult time.
God bless
Thanks so much for the update. I am pleased to hear that your medication is still helping you. That is great news.
I am so, so, so, so sorry to hear about your wife passing. My thoughts and prayers are with you and your family. I hope you can find the strength to move forward during this difficult time.
God bless
Title: Re: I haven’t posted for some time Post by: Alison on December 19, 2011, 11:42:03 AM
So sorry for you and your family.
Alison
Alison