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Very interesting. Sounds to me like the problem may have a glutaminergic or GABAergic element (likely both.) Next time you’re expecting physical exertion or heat reactions, try supplementing with L-Glutamine and GABA–you can get them both for cheap from Swanson. As a bonus, these supplements will increase your overall physical endurance. Let me know if it helps the hives!

Oh, and make sure you’re getting enough B6 and B12, too.

Thanks for the comments David. I’m not sure where you get the info that it has to do with a glutaminergic/GABA-ergic response. If you have any links/info supporting I’d appreciate it.

Also considering that your body synthesizes its own L-Glutamine rather well, I have doubts that supplements would do much. Same goes for GABA really. Again if you have links to research let me know.

thank you for your wikipedia article. ive had cu for seven years now, and your article helped me learn a lot more about it. im 17 years old, and i had never really looked into the technical side of it before, so thank you!

I’ve had cu ever since I could remember. It does peak in cycles, but it’s always been there to some extent. I’m 52 now and going through peri-menapause. If the symptoms of hot flashes aren’t enough it triggers the cu and it’s peaking. I got hives yesterday when i sneezed. Two different times that it peaked I went to the doctor for little or no help. Both told me I had the worse case they had ever seen. Lucky me. I’m going to try the anti-acid meds. Thanks for sharing.

Just wanted to assure you that there are other CU sufferers out here. I have had issues with cholinergic urticaria since I was about 22 (I am now 32). It is much, much worse in the winter (perhaps in summer, I am more acclimatized to heat?). I can’t even work out at the gym for more then 10-15 minutes before that horrible itchy, hot flush that gets worse and worse if I keep moving. It’s awful! I can’t even enjoy long walks with the kids or the dog, because I am afraid of getting stuck more than a 1/2 mile from home. Ugh…

Hey Tiare, Thanks for the kind words. I feel for you. Winter I don’t see too often as I live in San Francisco, so I don’t know how that would effect me. It was the heat especially exercising and my trips to the desert that really did it.

Thankfully my CU seems to have disappeared for the most part. I was really overjoyed when I didn’t see even a hint of it during my last trip to the Black Rock Desert. I used to go to Burning Man and just deal with being covered in hives all over my limbs and torso — I could usually ignore the itchiness but they were unsightly.

Mine started in when I was 29 and then seemed to begin to disappear about a couple years ago around when I turned 32. It wasn’t a diet change or anything — just age and time causing my histamine system finally deciding to stop being so unruly.

I hope you have similar good luck.

I came across your Wiki page this morning. Thank you for all the great info! A few years ago (12 to be exact) I started getting a red, itchy rash whenever I went out in the sun. Then I had to stop taking hot baths because when I got out of the tub I would I would be in pure agony for the next 30 to 60 minutes. I sometimes have the same issue with showers, especially on cold winter mornings (like this morning was). My palms itch and turn red whenever I hold anything hot.
Doctors really haven’t helped much. I asked my G.P., a Dermatologist and a Naturapath what it might be and what to do about it. Their answer–”Don’t know what it is. Stay out of the sun and don’t take hot baths.” DUUUHH! I can’t believe I paid them just to tell me the obvious?
Now I have a name for it. I know what my triggers are (anything hot!) and I have some pretty good suggestions as to what to do about it. I’m going to take it a copy of your Wikipdeia page with me the next time I go to the doctor to prove to him that I am not nuts!
Thank you so much for putting the page up. You might never know how many people it has helped. But I want you to know that it has helped me.

I happen to have this problem at this very moment, and its agonizing… argghhhhh…

I didnt know what this condition is called so I have been running through the internet just to check what it is all about, and i finally found this..

FYI, this is the second time I had this cholinergic urticaria, and the last one I had was 6-7 months ago, so I thought it was probably because of my diet, but it was not. It come and goes and finally after 4 days, its completely gone, so I thought its not going to happen in the future, but tada… it happened again…

Anyway, thanks for the information. It helps a lot.

I hear you all. As some have said, and in my case, it is more prevalent in winter months moving from cold to hot (warm) areas. In the summer, my body is more acclimated to the heat so I do a bit better. In my case it manifests itself intensely in my face, neck and arms.

I also feel that there is a trigger in my nervous system - when stressed, angry, embarrassed, etc. I have suffered with this for approximately 13 years. I am now 33 and see no sight of improvement. It greatly constrains my activities as the suffering and embarrassment is not just worth the pleasure of taking part in these activities. I take Atarax in varying doses and it helps… and sometimes it doesn’t make a damn bit of difference.

any other suggestions?

The wiki post has a good write up on the various types of treatments out there. That’s a pretty heavy anti-histamine you’re on. I never used anything like that just Claritin and occasionally benedryl (but not too often of the latter as it knocks me out).

How are the Atarax side effects for you?

What worked best for me was combining a regular dose of Claritin (H1 blocker) with Zantac (which is a H2 receptor blocker). Zantac doesn’t have much in the way of side effects short term but long term may be different so ask your doctor if you start taking it regularly.

I was just recently given this diagnosis after a week of hives. It wasn’t until early this morning that I realized I had made an addition to my prescriptions; prescription fluoride tooth paste. It seemed benign enough, but I got numerous hits on the topic right off the bat. One of the chief side effects is hives. Even using some of the fancier non-script strength tooth pastes can have this affect on someone who is highly sensitive. I’ve only been off the tooth paste for the last 24 hours, but it appears to be making a difference already. Just thought I’d throw this into the mix.

@becky Allergies to medicines are usually different than CU. Also considering the transitive nature if the disease it’s highly likely that any improvement you are seeing is purely a coincidence. You could also be right but the anti-fluoride brigade is more prolific than factual. Few if any people really have allergies to fluoride.

Oh my God I thought I was the only person in existence with this syndrome! Visits to doctors have amounted to nothing and through my own research, I realise that I have CU. I first got a reaction on my 40th birthday when suddenly the inner area around my eyes swelled up and I had to put on a pair of sunglassess to hide the hideous outbreak. I have suffered with this now for 12 years and it seems that when my body overheats - as in strenuous exercise, or if I get stressed or am rushing etc - this causes the tissue around my eyes to swell up almost immediately - beginning with the inner eye area near the nose then spreading down towards my cheek. I apply cold compresses and witchhazel but usually walk around looking like a freak for at least 24 hours. I take an antihistamine called Telfast and I buy the strongest dose I can find. The whole thing is humiliating and really cramps my lifestyle as I love to be active but have to always make sure to keep my body cool. It seems I am stuck with this for life. I just wish it would go away :(

dear patients i am an egyptian young doctor 24 years old
i have experienced cholinergic urticaria over the last 5 years
really it is a very very agonizing disease it limits my activities too much i cannot play tennis or football i cannot go to closed places
it arouses me at night

i seeked medical advice as i experienced some symptoms after the attack as mild dyspnea and sedation and headache and recently i developed parathesia in my hands which hinders my job as a docotor

i donot know what to do
i tried claritine and aerius and zyrtec and zaditen
now i am under atarax and telfast 120mg and zaditen
i feel better but i still complaining from cu

i would like to ask about the role of corticosteroids in treatment of cu

@Dr.Motaz Abusabaa other then what I wrote above and what’s on the wiki page I have nothing else to really offer in way of advice. I’m pretty sure that corticosteroids are fairly useless for CU.

colin i just found your wikipedia page and then this and it is so good to see so many others with the same types of symptoms i’ve been having. i am 31 and this just started for me about 6 months ago. i also have asthma and wonder if it’s related. mine was mostly in my childhood but is still induced by over activity and/or cold or humid weather. i’m actually in the middle of an elimination diet challenge under the supervision of a naturopath for this and a few other symptoms (mainly joint pain and ear problems) but the hives have been coming almost daily still. it’s frustrating! mine usually start with an unbearably itchy scalp and then they are like jill’s- first my eyes get a reddish discoloration around the edges and then the hives come and spread to my cheeks and shoulders and torso. only a few times have they gotten severe and spread over the rest of my body. anyway, i had another naturopath mention that she thought my GABA was under active (via kinesiology which i’m skeptical of) so i would be interested to see more info about that as well. but thank you thank you thank you for all of this valuable information!

I have cholinergic urticaria. There is a case where it was successfully treated with Omalizumab (Xolair) - check it out on PubMED.

Thanks for the details. I think I might have cholinergic urticaria - over the past week I have been experiencing the painful, itching, burning feeling when my body temperature rises. It started last week for the first time - it was my second day of a 3-day trek, and it crept up my back to the point where I had to tear my rucksack off my body. It felt as if I was being stung by jelly fish. I searched my rucksack to see if some sort of bug or creature was there biting me. I couldn’t understand it.

I took an antihistamine at the suggestion that it might be an allergic reaction, and also rubbed some aloe cream all over my torso, which seemed to help. But mostly, I tried to just stay in the shade during the trek. Out for a run this week, the same thing happened - my stomach was covered in almost invisible small white bumps, in a large red patch. And yesterday morning, while cleaning my house, it started as well. My son said he could see small white bumps on my back.

I am very concerned, as I like to stay active, and haven’t worked out for a couple of days because of this. I live in a very hot climate, and am worried about summer, so have been online for the past couple of hours trying to figure this out. I came across your WikiPedia page earlier, and now your blog. Thanks for the info. I am going to print the Wiki page to take to my doctor to ask for help.

I’ve had these symptoms since I gave birth to my 3rd baby 4 months ago. Any excercise will bring on a bout. Rushing to get out the door on time or even getting stressed out with the 2 babies yelling in the back of the car when I’m driving will do the trick. I thought I was a bit mad and overreacting, but am relieved that I’m not the only one. Is it worth going to the quack though? Or shoud I just battle through it and hope it buggers off the way it came?

Hello,

I also have suffered from cholinergic urticaria for quite a few years. I have tried the various anti-histamines, I have had a steroid shot, I have tried diet changes, etc.

I have had it for about 7 years now. Actually, at one point it did go into a remission. But it came back.

I have started a website so that others suffering from cholinergic urticaria or other heat related hives can come & talk to others on the forum about it. I have posted pictures, & more. They can discuss treatments, & I also am setting up surveys & questionnaires so we can see if we have anything in common that could be causing it. I also hope to add some more medical articles, videos, & more about cholinergic urticaria.

The website I have started is called www.HeatHives.com. It has a forum on it, as well as my personal story & struggle with cholinergic urticaria.

Anyways, thanks for the great article. I hope your hives clear up soon, and best of luck to you!

Ben
(HivesGuy)

hi..
i am aLso a victim of this CU..
i tot i was the onLy person in the worLd who experience it but yeah..
it’s not only me..
my Life is Like a chaos because of this aLLergies..
my grades are effected and my Leisur Life became duLL ever since i had this..
it was Last year when it started and after that.. i became a LittLe paranoid whenever peopLe Look at me.. i just want to meLt whenever we have recitations in cLass and whenever i get pressure it’s aLways there.. (my graduation, my bday,christmas party—–it’s aLL there!)
i can’t wear the cLothes i love cause i shouLd aLways be comfortabLe..
sadLy with my undies straps it aLso appears!!
damnheLL!! shouLd i not wear that?!
im reaLLy down because of this..i just aLways wana hide to peopLe and die!!!! im bitter about it..
but anyway thanks for this bLog..it makes me feeL a LiL normaL..
i hope this wiLL just disappear out of the bLue..
CU!! Leave me aLone!! argh..

Hey!

Ok so last night I went to a disco and it was really hot with people dancing everywhere sweating etc.. I had on a coat and stupily didnt take it of! I was dancign for like 40 mins getting v sweaty when I felt my face sort of start to sting. I went back to my house and saw small red marks on my skin appering and small red dots apper of my for head (it all happend on the face, no where else!) i took a shower and went to bed then got up and played soem gentle tennis. I took antihistime and it sort ofhelped bu they are still here! is this CU ? I am 17 and have never had this before!

ty!

I to think i have CU .. If i work out for more than 5 minutes i get 100’s of little red dots that arent raised, nor are they itchy!.
Really hurts your self-esteem.
Antihistamines help a bit, but i still get it every other day.
Im 17, this sucks.

Hi!

MY scalp started itching about 2-3 weeks ago, it was maddening. Then the itching started moving around, I had it in between my eyebrows and about a week ago it went like crazy all over me. But not everywhere at the same time, it’s as if its moving. my legs, arms, armpit, belly, back. I don’t know if small bumps appear or not, but I start scratching and then it spreads and you can see the bumps all over. Yedterday and today I have had the worse so far. It started itching inside my mouth and throat and my eyes. It’s horrible because I can’t scratch. I have been stauding a lot for this class I hate and I know I have been under a lot of stress, so I assumed this rash was some psychological reaction. But all I could find on-line was about CU, the thing is I don’t think it has to do with body temperature in me. I don’t know.
Thanks for the wikipedia article though…I don’t know if I should feel ok because now I kind of know what it might be or bad because apparently it’s a long term condition.
I have a final tomorrow and I can’t sleep because I am itching all over…this is horrible.

Hi

I have been suffering with the same condition for the past 4 -5 years. I am now 43.
I am looking at articles which have linked the urticaria to a H. Pylori infection. Have any of you tested positive for a pylori infection. I am sure that could be a common thread.
It would be intersesting to get some feedback from fellow sufferers.

I’m so glad I found you guys. I’ve had CU since age 14. It started alittle while after I started taking the medication Accutane. I had severe acne and was prescribed this med. Its suppose suck all the oil out of your glands to prevent breakouts. I know CU has to do with the oil glands an sweating. Even though my docotor said no accutane has nothing to do with CU I beg to differ. Im 24 now and had to change my entire way of life around this and it hasnt been easy. I will stay positive through this and know one day someone will find a cure… Good Luck Everyone

I had CU for a year when I was 25. The onset of visibly diagnosable symptoms was preceded by about six months of occasionally feeling like someone was driving nails through my feet. My doctor found this puzzling but had no recommendation. Once the visible rash appeared, a diagnosis quickly followed, and I tried the usual drugs. Nothing helped. Along with the standard list of triggers, laughter had dreadful results, and sex was out of the question: accompanying the rash, the nails-through-the-feet problem returned, and not just in the feet, causing in uncontrollable spasms. This is not fun, and it kind of spoils it for your partner, too.

My bout with CU ended suddenly one day when I got into a shouting match with my boss at work. Presto! No more CU! Seriously. It took less than two minutes.

One old dermatology textbook I read had the usual pages of color photographs alongside descriptions of symptoms of various kinds of urticaria. At the end of the chapter, there was a little section saying that, according to some old wives’ tales, the different urticarias are associated with specific repressed or unprocessed emotions. The author clearly didn’t give much credence to this, but still felt the need to mention it in his textbook. In my case, it was right on the money. As for my “cure”, my boss was understanding, especially since my solution to the engineering problem we were fighting about turned out to be better than hers. Lucky me.

I am now 52. I’ve had some periods in the intervening years in which my CU was making itself known, not in great strength, but more as a subliminal threat. I’ve managed to control it with frequent heavy exercise and an awareness that my usual mode of emotional repression really doesn’t work for me. No, I don’t go around getting in fights with people. Mostly, I take it out on the asphalt while riding my bicycle, and that’s usually good enough.

If you’re someone who is skillful at repressing anger or sorrow, I suggest you take this seriously. Part of the perniciousness of this disease is that it gives you something else to learn to repress, which just makes it worse. A few minutes of letting the genie out of the bottle might fix you right up. If you are this kind of person, you also know that that’s much easier said than done. Good luck.

just reading this is making me itchy - I have had undiagnosed hives since September of 2007. Been to a few derms and my internist. NO ONE knows what this is but because the hives are so itchy some areas have turned into exczema patches. Bad enough I have psoriasis now this is all over my stomach chest, legs and arms….steroids have done nothing. I take benedryl at night so i can sleep . I havent found anything else that works to stop the itch and clear up my patchs….

Hey…

just to let you know…THERE IS A CURE!!!!..do not stress as your days of suffering are over..I used to have cu but now that I go to church, said the sinners prayer and put my faith in god..it has finally gone! who said you need to see a docter,waste of money and time. Just see your nearest pastor and ask him to pray for you and the aim is to have faith!

:-]

Sorry Chloe, but I just don’t think that going to church is going to cure my CU!

Anyways, I am 26 years old, extremely active/athletic. I have lived in the mid-west my whole life. This past winter I began getting cold urticaria & cholinergic urticaria. I went to a doctor who suggested I take Zantac, and Benedryl. I stocked up, but the meds didn’t work.

My symptoms appear when I am introduced to cold. This can be cold weather, or a room that is air conditioned. I get hives all over my body, but mainly on my sides (flanks), arms, and legs.

As I also stated, I am very active and athletic. During 75-80 degree softball games you can find me in my long sleeve Under Armour and softball pants! Going to the gym is also something that I love. Before this past February, I never had any symptoms or problems with hives. Now, when I go to the gym, it’s a double whammy, an air conditioned gym, mixed with my rising body temperature from the work out. I can always predict getting hives by the end of my workout.

I went to a dermatologist, and got a little more helpful information. Was given a cortisone shot and a perscription for hydroxyzine. The steroid shot didn’t relieve much of my symptoms, and only received the shot one time. I took the hydroxyzine more often in the winter, and don’t take it now unless I have an especially bad outbreak of hives after I go to the gym. It knocks me on my ass for a good 6 hours after taking it!!

I refuse to change my life or activities because of having CU. While it is very uncomfortable having hives, and I am quite irritable when I get hives, I know that it won’t last long, and that within an hour or so, the hives will subside.

I had it 20 years ago. After a few months it went away. It started again 6 months ago. Miserable. Terrible. Medrol works and is amazing. Took 64 mg for 6 weeks but can’t do that forever and got really fat and bad for bones. Now trying every anithistime. Nothing works. Got the lips, eyes and my skin, oh my. Have been eating not much, vegetables, a little beef and fish. This is true misery.

Wow, um thanks Chloe for your completely useless comment.

Stephany has the right attitude. Push on and don’t let it stop you doing what you love. Personally, I found that when I just pushed on and set my attitude right the itchiness was a lot less. The hives still were there but as long as I didn’t concentrate on them, they didn’t bother me.

…thanks again to all the people who commented with words of encouragement and advice!

My 8 year old child has had hives for over a year and a half. They always appeared after showers. A dermatologist finally diagnosed her with aquagenic urticaria and gave her hydroxizine , but after lowering the temperature of the water, the hives improved. A big problem seems to occur during bedtime. She is now sleeping with one sheet and a thin quilt to avoid significant body temp. increase, however she has to sleep with her hands above the sheet and palms up or else the heat generated by putting them under the covers produces pain in them that lasts about 30 min. to an hour. Exercise can begin the itching process and standing can produce extreme foot pain. She is only 8. Claritin helped the hand problem, however I was worried about it possibly influencing the foot pain. I noted it to be a possible side effect. PLEASE any advice would be helpful.

I meant to say ALLEGRA, not claritin.

I am no medical expert, but I too have the pain in my feet (and hands) and I don’t think it is a side effect from the medication. I do not take Allegra, and I get extreme pain in my feet and hands. For me it begins when I am cold, in cold temperatures, or in an air conditioned building. The pain in my hands and feet come before the hives appear. It is almost a warning sign, where my body is telling me, “hey, warm up, or do something, or else the hives are coming.” In the warmer weather the pain in my feet subsides but I still get the pain in my hands on occasion.

@ Stephany Hives are itchy but not really painful as you’re describing them. If you’re feeling pain you should see a doctor cause that’s something else.

Thank you for your response Colin, I am under the care of a skilled dermatologist. The reaction I have with Cold Urticaria concerning pain in the feet and/or hands has to do with my body’s reaction to the production of histamine. It is not uncommon for this to occur in SOME patients with CU. I did not say that the hives were painful. It is another effect of the production of histamine in some patients to have pain in their hands/feet.

Hi. So glad I stumbled on this site. I have been blog hopping for too long now trying to figure out what this itching is about and not getting anywhere. I believe this is it. Mine started about 6 months ago in the 3rd trimester of my pregnancy. The itching is on my legs and arms mainly, and occurs right after I shower, after exericise, when it’s unseasonably hot, or when I first wake up because I was rolled up like a burrito all night.

My question to you all is, can you have CU and not have hives? I seem to
exhibit all of the same symptoms described in Colin’s Wikipedia article about CU, except for that fact that you cannot see any manifestation of this problem on my skin. My skin can look completely normal and I feel as though I want to scratch my legs with barbed wire. I would think that it can affect people in a variety of ways though, as everyone’s system is different? One thing that has really helped me is to shower at night. for some reason, I will only get mild itching at night. I am not sure why that would be. But it does help.

I take a Claritin and Zantac everyday and I do not know yet if it helps per se, but I have read that the combination of the two is supposed to. I am on my third week of this, so maybe after more time goes by I will get some results. Ironically, I work at a dermatology clinic (go ahead…laugh) and the docs there didn’t know what the hell I was describing or how to treat it. You would have thought I grew alien antennae and didn’t know it, by the way they all looked at me. They gave me an RX for Triamcinolone (cortisone) cream .01% to try. I didn’t do squat. They told me it would help me to stop my itch scratch cycle (as if to say it was all in my head). I starting researching the medical books at work and initally came across a diagnosis that I thought seemed to fit (aquagenic pruritis), but then realized, it wasn’t the water causing the itching, it was my own immune system in conjunction with my body’s thermodynamics. I think aquagenic pruritis is an off-shoot of CU though, since water is something that induces itching, just like heat does. Aquagenic Pruritis is supposedly very rare. Alot of people in the blogs I was reading thought that is what they had, but I bet it is CU instead.

To Colin, and whomever else is reading this…go online and read about mast cell overproduction and a disorder called “Cutaneous Mastocystosis”. I came across this last night and wondered if there was any correlation to what I have going on, or maybe some of you too. Maybe overproduction of mast cells goes hand-in-hand with CU? Again, I don’t get any hives, wheals or raised spots. I just have many moles and freckles- probably due to all of the tanning I did in my early years when I looked good. Now I am just white and pasty : (

Let me know what y’all think.

Well, I best get back to itching…
TTFN

I have it too, during exercise for longer than 30 min. I just stop and cool down when it comes and try to take a cold shower after.

An irritating affliction we suffer.

Thanks for the article

Shawn

Hey there everyone!

Well I am suffering with chronic itchining for years and because i am in ireland im not used to heat at all but my parents live in spain for last 7 years so i go once a year! Thats when all hell breaks loose i end up covered up hiding in the shade because i look diseased! so i have spent the last year trying to find out why i have hives at random come and go many times a day!! Doctor told me on Monday that i had scabies lol anythng to get me out of the surgery!! I knew i hadnt so i went to another doctor just 2 hours ago and yes its now official I have CU, in saying that from researching the internet since i was told i had scabies i knew that this was what i had from reading other peoples posts and looking at pictures. I flare up the minute i drink alcohol, have hot showers, eat anything and especially if my body temp rises for any reason.

So because so much seems to flair it up i am on a long daunting journey to re design my whole lifestyle to get this under control, so glad to finally have a name to it and to know there are so many more of you out there.

Thanks for all the info and best of luck to all of us on beating this weird, inturrupting disease.

Luv from Eire
lou xx

I had mixed feelings when I read all the comments and the story of Colin about this unwelcomed intruder, Cholinergic Urticaria. I feel relieved to know that I am not the only unfortunate host of this problem, but in the meantime I feel bad that there are so many others who go through the same anguish as I do.
I used to have an allergy with hot and spicy foods since 3-4 years. Annoying as it was, I would have happily retained it for good if asked whether I wanted to swap it for CU. I have been suffering from CU since more than a year now, and it’s getting worse. The doctor prescribed some anti-histamines but they exacerbated the whole thing. I dread the sun, and any activity that might trigger my allergy. I am hypersensitive to heat now. I get weals within seconds of any physical activity or exposure to sun. I am going to try this new tip suggested by Colin. I wish it works.

Wow - I’m not the only one!

I had to quit uni because of it, I literally couldn’t get there because I’d be in so much agony.
After uni it got a bit better - I think mine is very stress-related. I worried about stuff quite a lot in uni, but worry less at home!
I have excema and asthma and a trillion allergies too :( makes life quite difficult, especially because people aren’t very understanding.
It’s worse for me in winter, I ran up the stairs once when it was freezing cold outside and was in bed for a couple of days afterwards, unable to move. I miss going to the gym too, I used to love it. This time last year I would have been in the gym or jogging right now.

Its quite embarrassing too, that’s the worst of it. I used to refuse to go out and I actually split up with my boyfriend because I didn’t want him to see me looking so ugly :’(
But we’re back together now :) and the dermatologist has prescribed me ceritizine [sp?] so hopefully that will work. I will probably get some sort of psychotherapy stuff too, since mine is so stress-related

Going travelling soon, will probably die on the way though :( but wish me luck… i can’t just hide away!

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