Hi, I’m a 20 years old and I’ve had Cholinergic Urticaria for about 6 months now. I remember it starting this October, I would be in class and I would suddenly feel really itchy when someone would talk to me (I have social anxiety). During a group project I had to leave the room because the itching became unbearable and I noticed little red dots on the back of my hands and my arms, and I was pretty freaked out. I was really worried about what it might be until I looked online and discovered Cholinergic Urticaria.
A dermatologist diagnosed me with Chronic Hives. I guess they never heard of Cholinergic Urticaria, because my symptoms match perfectly (Pinpoint hives, breakouts when hot, nervous, etc.) . They did a blood test and everything came out negative. My current medications are Vistaril, Zyrtec, Allegra, and Propranolol. Propranolol is the most helpful because my hives mostly come from situations where I’m nervous. I wish I had started taking it before I had the hives. The antihistamines all sort of help, but not much. I still get hives multiple times a day.
It’s just so awful, I don’t know how I can cope. I remember some of my happiest moments at music festivals in the hot summer sun, dancing in a big crowd, or just laying in the sun on the beach with my friends. These would be impossible for me now and it makes me really depressed. The feeling is just so terrible, how my whole body feels hot, I’m itchy to a point where it’s painful, and if I’m in public I need to keep calm and look composed even though I feel like I’m dying on the inside. I read that the average duration for this is for 7 years, and I have no idea how or if I can cope for that long.
It all feels like a nightmare that I’m hoping I’ll wake up from, but I know it’s not the case. It’s so surreal, the feeling of having so little control over my own body. In a way, I would rather have a more dangerous illness, that way at least I could spend my time in the hospital, and not need to go through life with this. What motivates me is hoping that one day I’ll wake up, go to a store, and not feel itchy when the store is heavily heated, and then not feel any itching when I buy my things from the person at the counter. I used to take these little comforts for granted.
I haven’t experienced a summer with Cholinergic Urticaria yet so maybe that will make it better since I’ve seen some articles that it goes away in the summer for some people, or maybe it will just make it worse. So far where I am the temperature has stayed pretty low so I’m looking forward to and pretty scared of the next couple of months. I’m going to see an Allergist in the next few days and ask about a Xolair shot, since I’ve seen that it can be really helpful to some, but I just hope my parents insurance covers it. I’m also going to try to try Doxepin.
I guess my questions are: How has Cholinergic Urticaria affected you in the summer? Does it get worse, better, or stay the same? Also, for those who have had it for a long time, what strategies do you use to cope? Also, to people who have tried Xolair or Doxepin, how has it worked for you?
And I also really want to thank the creator of this website. It’s comforting to know I’m not alone in dealing with this. I sincerely hope that one day they will discover a cure for Cholinergic Urticaria and we can all be free of this.
Thanks for reading!
-Dan
Anonymous says
Hello Dan
Im 22 years old and ive had my Cholinergic Urticaria for almost 6 years now. The first year i could go outside and do stuff during the summer but the last 4-5 years its pretty much been impossible to go outside during the day when its like 25c.. I live in Sweden so the temperature changes a lot from the winter to the summer, so i dont know if its cause of the high change of temperature that it makes it worse. After a while I pretty much get used to the temperature but at that point the summer is almost over.
I always have a fan close to me, ice cold water ready in the fridge. Also dont try to think so much about the hives when it gets hot, the more you think about it the worse it gets.
Ahmed says
Hi Dan,
I am sorry you have to go through this thing , it’s awful i know. i have had it for almost 13 years since i was 14 years old , (now i am 27)
and answering your questions :
How has Cholinergic Urticaria affected you in the summer? Does it get worse, better, or stay the same?
it gets worse in summer because i sweat a lot and sweat makes it happen.
Also, for those who have had it for a long time, what strategies do you use to cope?
I actually trying to work online as a webmaster since i can’t work outside of my house , but it’s a hard work and takes a lot of time to start earn anything , but i am still trying.
and if i have to go out of my house , I just take an extra shower right before i get out, because that delay the next attack.
i try to stay sweat-free most of the time i avoid anything that could changing my body temperature. and go out only at night time because of cool air.
Good luck 🙂
rae says
I too suffer with this awful desease. try zantec and zertag onece or twice a day, it helps me a lot.
Anonymous says
Allegra and Zantac helped me alot! Zantac is a different antihistamine from the others. I haven’t had a full outbreak in days and I actually went outside and felt fine
Marcia Hildreth McGrath says
My 31 year old son has CU, and his goes away in the summer. Since you are new to this, you may want to try some of the diet suggestions and see if it isn’t coming from an allergy or something like gluten intolerance. One lady on here recently said that her CU went completely 100% away when she eliminated the group of foods called “nightshades.” Hang in there, young friend. Do some experimenting, remembering that it takes about 3 weeks for your body to completely eliminate an “offending” food that you may be allergic to. I highly recommend getting the book promoted on this website. It’s full of really helpful information. Don’t give up hope!
Dan says
Good Idea, I’ll have my allergist do an allergy test. Thanks for the help.
An empathetic friend says
Hey friend- reading this, I feel very sorry for you. I’m 19 years old and have experienced and understand exactly what you describe about festivals/ clubbing and having fun in the sun being gone, getting itchy when having 1 on 1 conversations, and I understand and have felt the same feelings about having a different illness that is more understood.
I recommend my technique for dealing with this problem. I wear a thick jumper and many tops and go running as fast as I can for about 5 miles a day- I find the high levels of sweating almost completely eliminated my symptoms (which have been ongoing for 3 years). Obviously only do this if you feel it’s safe- based on the severity of your condition- e.g have you ever had an anaphalactic shock due to the hives.
I have had Doxepin at 100mg per day. It does work very effectively (more so than antihistamines). But you will feel tired, lethargic and generally ill whilst taking it- or at least that is what I experienced. I encourage the most natural methods of treatment- allergy elimination diet and exercise have done much more for me than any pill or pill combination I have ever tried (and I’ve taken every antihistamine and Doxepin and hydroxide, in almost every combination). Keep your head up- it will get better as you learn how to cope and what works for you.
Dan says
Thanks for the help. Generally, I don’t have trouble breathing during my hives, so I’ll ask my doctor if he thinks it’s safe, and I’ll ask about Doxepin as well. Whatever the side effects are, it’s got to be better than what I’m dealing with now.
suliman says
Hi Dan ..
my name is suliman and i’m from saudi arabia ?
I am sorry you have to go through this thing.. I have had it for 8 years now ,
at the beginning I thought just the way you did .. and that is normal .
but I realized that made my situation worse, i’m F-15 strike eagle fighter pilot so I thought this is the end of my career, because every day I have to stand up and give my crew members a mission brief for at least 90 minutes .. if anyone of them ask me a question during my brief I get nervous and start feeling itchy and they can notice that . then i go to fly while wearing a flying suit and
a helmet 🙁
The temperature during the summer in saudi arabia is almost 50’C 🙁
i had to suffer from this every day
but with the the time i realized it stops appearing when :
– I don’t think about it and try to ignore it.
– I stopped eating spicy food ,
– when My body is not feeling fatigue and that means enough 8 hours of sleeping every day.
– try to minimize the increase of my body temperature by taking a cold shower always .
– I stopped drinking coffee .
I’m still flying every day .. trying to deal with CU .
my friend don’t make it stops you from any thing you want , go for it .
one day it will go away 🙂
I hope you get better .
Dan says
I hope you get better as well.
Matt Trovato says
Hey Dan,
I am just recently learning how debilitating this condition can be and can understand what you are going through. I am 29, and I didn’t start getting symptoms until 2 winters ago when I was 27. At the time, my symptoms were minimal, i would get a little itchy when I was warm and I wouldn’t sweat much. Once the warm weather rolled in it went away and I would only itch when my body was extremely over heated and even then it was barely noticeable.
This year it has gotten pretty bad. Slight increases in temperature causes my arms and legs to get little hives, and the hotter I get the worse they get until they are raised bumps. The itching becomes unreal at that point. My only saving grace is that I can relieve the itching fairly quickly with cool water or anything cold. I no longer can eat spicy food which up until 2 months ago I was eating on a daily basis, and I am talking seriously spicy stuff. Now I can’t even have tobasco without a reaction. My body has stopped sweating completely it seems. I sometimes think about sweat treatment but can’t imagine how awful it will feel.
Now that it is nearly summer here in New Jersey I am worried I won’t be able to enjoy the weather and be outside. It’s depressing. This is most likely going to be my first summer dealing with this condition, and I am not looking forward to it.
Best thing I can tell you is to try and stay as positive as possible and be open to new treatments. I am just starting treatments myself and can only pray they work.
-Matt
Dan says
Hey Matt. I’m in New Jersey too, and with the weather getting hot, my hives have mostly gone away, but I’m still dreading the winter for when they come back. This may make it harder to get a Xolair shot if my hives don’t seem that serious. The allergist also diagnosed me with Cholinergic Urticaria, but I hope he doesn’t just dismiss it as seasonal allergies now that it’s mostly gone. I used to like spicy foods a lot too, I would put hot sauce on anything, but even in the summer with my hives getting better spicy foods still make me itch. It’s funny how things like that never seem so important until they’re gone. I hadn’t really thought about sweat treatment before but after seeing how much being able to sweat in the summer has helped I think it’s worth a shot next winter. I hope the summer helps out your hives too.
Shane says
Hi dan I’m 32 had I only get this when Im on a jog wearing a hoody it’s only now and again I break out in hives but there very big when I do some are 2-3inches , but I think back it’s ever time I eat a cheese type ready meal frozen pizza Buffalo mozzarella in a salad or some cheese pasta bakes that’s just my own thinking on it so going to stay away from processed cheeses , I live in Ireland and if I break out I take Piriton itching is gone in 3-4mins hives are gone in about 15-20mins if you want to try I keep them in work home and in the car as I can get a mild case from stress sometimes.
Anonymous says
Hey Dan, I know how you feel man! Trust me, I use to be able to hang out with people and go out and enjoy the summer even though it gets brutal hot here where I live but It’ll get better man! In the summer time, I feel like you’ll have a better shot of beating it because your body will heat up more faster and you’ll be able to sweat more. Also you can take a really hot shower in the mornings and I know it’s going to hurt and sting alot however if you can manage it for at least 10-15 minutes, you’ll be able to break through and sweat good for the rest of the day and it’ll feel much more better. And if that doesn’t help (Talk to a doctor before doing this) you can try allegra + Zantac, it worked really good for me over the last day or so and I’ve been able to do more stuff and even go outside without breaking out!
JW says
Hi Dan. I’ve had CU for about 9 months now, and this is the first summer I’ve had it. As temperatures increase here in the midwest, it looks like I’m one of those who get better in the summer. So far, it seems that my breakouts are very minor if I’m exposed to warm temps throughout the day. Even being in a warm environment for several hours hasn’t been unbearable. Compared to the cooler seasons, my hives have been less severe in appearance and itchiness. I’m still learning just how to affect and cope with this condition, but this recent discovery is encouraging, as it may provide me with some clues and options. I tried Doxepin a couple months after my CU first showed up, but only at a very low dosage (20-30mg) for a month or so, and didn’t notice any improvement. I wasn’t willing to try a higher dose yet, until I’ve had a chance to learn more about CU and try more natural therapies. Don’t give up. There are many potential remedies, and you probably need to find the one(s) that work best for you. Good luck!