Cholinergic Urticaria (heat Hives)

I read most of the posts in this forum and my condition matches that of cholinergic urticaria... really got the information i wanted... i was/am suffering from this itchy bumps due whenever exposed to hot climate or after exercise... it started roughtly 3 weeks ago when it was damn cold... a couple of years back, during winter again, i had allergic rhinitis and had to take a dose of antihistamines, doses of cetirizine etc.,... it did not solve the problem... but, after some hit and trail... i could manage ... now, i know what triggers rhinities and try to take precaution... but, hives is new... never had any skin problems or anything as such.... but, my skin is dry... this winter was bad and my water intake reduced .... the first time i started feeling itchy feeling was after taking hot ( i mean very hot) bath and walking or climbing....

does anybody have hives because of rhinitis?

i think after reading a lots of posts... i might first try the sweat method... i have become lethargic due to my profession and that may have resulted in my condition..... i have not visited any doctor yet... was trying to apply lot of over the counter moisturizers as i initially thought it was eczema or some dermatitis or allergic reaction to some food... but, i realize it is only jogging or running which makes it appear..... it triggers hives and after 15 mins or so, i am back to normal as if nothing happened...it is making life worse, as i cannot do any activity which increases body temperature....

I feel sorry for all the people suffering with this problem for years...

I'm a 24yo male, and I've had CU since the beginning of this year - Jan. 2007. My primary doctor had no idea what I was experiencing, when I started seeing him about it in February. He suspected hives, and so I started doing my own research. I came to the conclusion, that without a doubt, I had CU. I told my primary doctor, and he didn't even know what it was. I saw him a total of 3 times before he referred me to an allergist (also called immunologist), and he still would not agree that I had CU, mostly because he didn't understand it.

When I first saw my allergist (May 2007), I hadn't even finished describing my symptoms, and he stopped me to say - "you know, you have cholinergic urticarea!" I was relieved, hopeful that there was a cure, but as of yet, i haven't found one.

Just like most people with CU, I get it the most when I'm hot or stressed. There's not a day that goes by that I don't have it, or have some sort of breakout. Sometimes the smallest amount of stress will cause it. It's the worst on my wrists and hands, and my feet and ankles. In extreme breakouts, it affects my arms and back very intensely. Sometimes there is no visible hives, but often they appear as really small red or pink dots. It's like waves of pins and needles all over.

I tried the "sweat it out" method - ha! that might work for some people, but not at all for me. I thought that maybe I wasn't sweating enough -- but though I don't sweat much usually, I did sweat. After 20 minutes of the worst torture of my life, on a treadmill, the hives did start going away, but they came back just as usual by the end of the hour, and the rest of my day was just as bad. I tried that for a number of days, and it proved worthless - in fact, just the opposite, because I was needlessly torturing myself. When I told my allergist, he prescribed an epi-pen - that's because forcing large amounts of histamine release in your body could cause anaphalactic shock, and death if you're not careful. And, as I said, it was worthless pain anyway.

My allergist prescribed a number of antihistamines over the last few months. Claratin (loritadine), which did nothing, even at stronger doses. Zyrtec actually made the hives worse. I tried it three separate times, for a few weeks at time, and each time, the hives greatly worsened. As soon as I stopped taking the Zyrtec, it got better (well, back to "normal" at least). My doctor also prescribed Hydroxazine, first 25mg each day, then 50, then 75 and finally 100mg per day. Besides doing nothing at smaller doses, the larger doses only made me extremely drowsy. At 100mg, I barely made it out of bed the next morning (the doctor had me taking it just before bed), only to practically faint in the shower, and go back to bed for the rest of the day. I've also tried various combinations of Singulair and Clarinex along with the previously mentioned drugs, with no improvement. The only drug that I've taken that shows a really minor amount of improvement is Zantac (ranitadine). The Zantac only helps stop the hives visibly forming, even though they feel just as intense. 95% of the pain feels like it's under my skin - almost in my nerves. The 5% that is on the surface of my skin is caused by the physical appearance of the hives, but it's more like a slight sting that lingers after the hives have already started dissapearing. So, needless to say, the Zantac takes care of that 5%.

My hive breakouts usually last 2 - 10 minutes, but average at about 5 minutes from beginning to end, if I'm able to get into a cool place, and de-stress. The visible hives are completely gone after 10 minutes or less.

Oh yeah, I tried benadryl and a few other over the counter anti-histamines (basically every over the counter anti-histamine I could find), and none of those have worked at any dosage.

So my doctor says that I'm out of options, as far as drugs are concerned. There are stronger drugs that might work, but the extreme side-effects and long-term affects apparently aren't worth the risk.

I'm still taking the Zantac (Ranitadine, the generic equivalant) 300mg per day, and that helps just slightly. I will definitely try to post any updates if I find anything that helps more than that. CU is just so hard to explain to friends and family! Just talking about it makes be stress and break out, so I'd rather not tell people when I can avoid it.

I'm not so much looking for suggestions on this forum (though they are very appreciated), as much as I'm just trying to share my own experience with CU for others who are just as lost trying to find a cure. So, I'll keep you updated...

Boy, I hear you b83.

I'm 17 right now, and starting my first year at college. I started having outbreaks in June of '05, and they've only gotten worse over the past 2 years.

I've been to over 10 doctors, some in different specialties than others, and nothing has worked. I've tried basically every medication that my insurance covers, and a few others, including over the counter meds as well. I just can't seem to get any relief, similar to you. I'm currently still trying running every day or every other day, depending on my energy level. I really don't see it helping much, because it has just about the same effect on me as it did on you, b83. Sweat causing more itching, then a slight reprieve from the itch, then an hour later everything is back to "normal." It really is a nightmare.

I've read most of this thread and I've seen many people acknowledging acupuncture as a solid treatment for CU. I'm really considering trying it as soon as possible. My problem is the money, not the belief or anything. I'd love to see if it would work on me, or many other people in this same position.

On a little side note, I've been using "Icelement" as my internet name for about 5-6 years, and 2 years ago I developed an allergy to heat. Coincidence? I think not!

I hope everyone out there is feeling at least a little better after new treatments or medicine! If you have any new ideas or 'super-cures' be sure to post them! I'm up for anything at this point.

-Icelement

oh thank god. i thought i was a medical mystery! im 17 years old, and a senior in high school. my cu started in 6th grade, and ever since they come when i excersice, get hot, get upset, and sometimes just completely random. its been really hard because i really felt like i was alone. no one new what it was and no one at school understood. its embarassing for a 11 year old to be taken out of school in a wheelchair, covered in hives, but i got used to it eventually and learned what my triggers were. every now and then i push myself too far and get a really bad one, but i pretty much keep them under control.

its been hard lately, however. in my school district its mandatory to take gym to graduate for one semester. well, i put it off till senior year, and now ive just started the year and already its incredibly stressful. my gym teacher says i have to participate to pass, and my parents and doctors are talking about taking it to the board. sometimes i hate the fact that i got stuck with this just by chance and now have to put up with the humiliation and shame. high school kids are brutal, i tell you what, and ive gotten to know the nurses quite well. anyways, i just wanted to rant to someone who actually knew what i felt for once.

i live in maryland, complete opposite side of the country i really hope it gets resolved, i dont want it to affect my other classes or other aspects of my life.

right now im not taking any meds, because nothing has been working. ive tried every antihistamine there is on the market, and the only things that seem to work are epipens, and benadryl when i actually have an outbreak. so far, i have found nothing to prevent it, only to ged rid of it when it happens. sorry i cant help you :\

it really is hard to live with. my family is very supportive, but they just dont understand what its like.

Dang, sounds like you two got cu pretty bad. The best method for me is the sweating method. Although Ice your in Cali so you must be sweating all the time (unless you avoid it by staying in) and it doesnt seem to be working for you...so i dunno wat to suggest. I'm in Vancouver, Canada....rain and cold 4/5 outta the year. I wish I were in Cali for my cu....wanna trade places?? I'm trying accupuncture and a natural herbal pill. It does work but its not gone yet- 8 treatments over 8 weeks so far. It improved quite a bit, its levelled off for a while, but it does still affect my life, I cant do all the things I would like or be who I wanna be at certain times because of it. Combination sweating in the morning before the day starts and accupuncture once a week seems to be good improvement.

The best advice is just to physically burn all those frickin histamines off by purposly heating up. Makes sense and seems to work, for me though, since there's only so much histamine in your body so if you purposely deplete it it you should be fine until your body produces it again, usually about 12-24 hours until enough is made to become bothersome. First time will be extreme torture cuz if you've avoided breakouts a huge reservoir of histamine is in you. If you burn off more in a day than your body produces it gets easier and easier everyday. Good luck!

Hey guys, just checking in. I'm in NY and the weather has been pretty good lately (80s), so it's been easier to sweat. My question for you guys is do you guys have any of your teeth filled in? I think I developed CU about a month after I had my teeth filled in and I only recently began to think that the two might be connected. Thanks

Just like the runner I am a bodybuilder and suffer from CU. When I have not broken a full sweat in a few days I'm usually in for a horrible experience once I go back again. I have only recently found out what I suffer from. I have had this problem since I was 14 and I'm 30 now. I used to dread mowing the lawn for my parents in the summertime the grass dust and sun only aggravated the condition. Here is what I suggest for those of you out there that are afraid to go outside or to the mall because they are worried they may have a breakout. Drink tons of water. Diluting the sweat and removing the salt from the body lessens the severity and duration of the breakout. I usually bring a gallon of water to the gym during my workout. If you are more hydrated the better chance you have of breaking a good clean sweat. If you are urinating dark yellow your sweat is likely acidic and salty. This kind of sweat is extremely irritating to my skin and the itching can cause my throat to close up and make it hard to breathe. I don't rely on antihistamines, or any other remedies although I have found that Paxil lessened my symptoms while I was taking that.

If you sweat thoroughly and often you can completely eliminate any future breakouts. The hard part it deliberately putting yourself through an initial breakout. Once you sweat daily your histamine levels are depleted and only mild yet bearable breakouts occur.

Hello all,
I am a doctor in the the Miami area and have had a tremendous amount of patients come in with these symptoms. Up until about 2000 there was not much study done on Cholinergic Urticaria, however we now have lot of information on this disorder. First let me say that you should never feel like it will never go away, because most people do get better. In fact, 70% of all people who suffer from Cholinergic Urticaria say that there symptoms are gone within 6 months to 1 year. There are however, cases in which a person can have the symptoms for long periods of time. These are rare cases. Most people who suffer from lifetime Cholinergic Urticaria are people who experience it early in childhood ( usually around age 8-10 ) and these people may have symptoms of some sort through their life. However the majority of people who have Cholinergic Urticaria, basically get it from out of the clear blue. Another words, one day you feel fine and then you wake up for that hot shower and bam! Your broke out all over. Your body is a sort of like a machine and whatever it has grown use to, it will expect on a day in day out basis. If for some reason, there is an increased amount of stress it may bring on the first symptoms of Cholinergic Urticaria. Most cases of this disorder are originally triggered by an extreme amount of stress. Not normal daily stressful activity, but something that sets your body off in a serious way ( divorce, loss of job, severe money problems, death in family ) and things of that nature.

As far as treatment, I would highly advise that you try to avoid the outbreaks. Take cool or luke warm showers, no long workouts, and most importantly try to keep your stress level to a minimum as this can actually help eliminate the problem. Try and find a hobby that takes your mind off of the fact that you have this disorder. It has been proven that people who have hobbies have lower blood pressure than those who dont. So try and find something you really enjoy doing and have fun with it. This will help in the healing process. There are plenty of medications that can be used to treat Cholinergic Urticaria and you should speak to your doctor about what options are available to you.

I recently attended a seminar in Athens, Greece about Cholinergic Urticaria and some studies in Greece have determined that people who live in a hotter climate are 3x more likely to have the problem at some point in their life. One thing that is very important to remember. This will go away. For those on here saying that its getting worse and worse and worse and worse and worse. I have to say its all in their mind. It is a well known fact that your body gets use to anything! Another words, if you were to lose your eye site. It would be horrible at first, but as time went on your brain would grow use to the fact that you can no longer see. It would then not bother you. When you get in an ice cold swimming pool, your body tells you its time to get out. After ignoring what your body tells you, your body says well if your not getting out then i'll re-adjust my setting. After 20 minutes you no longer feel cold. Why is that? The water is the same temp. but your not cold!!! Its because your body adjust! As does your body adjust to Cholinergic Urticaria. Im not saying that it wont be there, im just saying you will become more use to it and it wont bother you as much as time goes on. For most, it will just go away.


I hope this has helped. Thanks and God bless you all.


Mr. Poulos

I also wanted to add a few extra pieces of information that should be of some help. I have had several of my patients say the following have helped them fight off CU attacks.

First of all, drink lots of orange juice ( contains Vit. C ) or if you aren't a big O.J. fan then simply take some vitamin C pills

Second, I have had several patients say that Red Bull energy drinks help them go attack free. Some even say that it cured the CU? I am not sure of the stability of this but I do know that Redbull has lots of root extracts and important vitamins ( Vitamin B and B 12 ) also Taurine which has been called the unestablished cure for many things. So what the heck, give a RedBull a try and see the results.

Third, don't let it ruin your life. Giving up your life only causes more severe stress and will also add depression. Fight through the attacks and maintain your life.


I really wish you all the best and I know that everything will work out.

Prayers to you all

hi all,

this is my first post. i've had cu for about 4-5 months, diagnosed about a month ago by a dermatologist... got the typical recommendation, hot showers, anti-histamine and sun exposure. unfortunately i feel these only treat the symptoms, not the underlying cause. my flare-ups happen mostly in the afternoon now, used to be morning. Mine is caused when I get too hot, and or stressed (summer is approaching, kind of concerned that I'm going to be up the creek, trying to find something to fix this before then).

I work at home and whenever work would call (or anyone for that matter) it get it. i've started juicing veges and doing a parasite cleanse and liver detox (want to a complete detox at some stage), it appears to have gotten a little better since starting this, it's hard to tell tho. I haven't tried the sweating yet, I do notice that I don't sweat as much as I used to however. Running won't work for however as I also have chronic fatigue, and i feel that both of these are somehow related - immune/adrenal, thyroid dysfunctions. I only developed cu after a bit over a year into my cfs, after a particularly stressfull time.

Anyway, I've tried a lot of different approaches, chinese herbs (going to give this a shot for the cu), and naturopathy (will try again also most likely). I was told by one guy I had candida, and I know I've got a dodgy liver as I can feel it most of the time. hopefully a good detox can help.

I guess u've gotta try and attack this from all angles, try everything u possibly can to see what works, there doesn't appear to be any one cure all... which sux i must say.

Might also try and get a portable sauna, see if sweating it out helps, not sure if i could stand the itching tho, i've started having cold showers when i have an attack.

anyway, fingers crossed something works. will update as i progress.

oh, and thanks to all the previous posters with their suggestions, I'll try each one as i get a chance, hoping something will work

cheers
john

oh, one thing i'm doing i forgot to mention, if stress/anxiety also trigger a reaction. try downloading some holosync from a torrent (do the prologue first). holosync is meant to bring your brain to a meditative state, i know when i use it does help me to relax. anyway, it's worth a try.

anyone heard of or used this with any success?

hi my name is chris im 20. i have had cholinergic urticaria for 2 years now. i seem to have a much worse form then most people. i also have raynuads and VERY dry skin thats tight and constricted preventing me from sweating normally on my own. does anyone else have this dry of skin? i cant shower or exercise. i can rarely go outside. im in severe pain most of the time. ive tried most of the antihistamines, herbs, accupuncture which did nothing. Prednisone helped a great deal but the doctors only let me take it for 6 weeks and i developed some side affects from it. the only thing i have found that helps is covering myself in amonium lactate lotion 12%. twice or more a day. and the sweating method but only by going to a steam room. this is very difficult to do for the first 20 mins. but eventually sweat comes out and i feel a better until i leave then it returns about 2 to 3 hours later but after i get out i cover myself in the amonium lactate. i cant work and am fighting for disability. i belive this all started because i took a drug called accutane. an acne drug. 6 weeks into the course i developed all of these symptoms. has anyone else experienced this? and i did also get a tooth filled at that time. ive spent thousands of dollars on this illness and have given up on expieramenting. weed can help to calm the nerves somtimes but isnt that effective. i hear the average duration of this is 7.5 years. i hope it isnt that long for me. i want my life back.

I took a drug called roaccutane about ten years ago... possible that there's some damage it did I'm only experiencing now... i have no idea tho.

I took accutane as well. I've been off of it for 3 years, can't remember exactly. It is possible that it did some liver damage which some say CU is connected to the liver. I never had CU symtoms during accutane. Anyone else take accutane? Lets all try to narrow in on the cause of this.

Update on my condition. 12 accupuncture sessions completed. CU has improved but its still here. It is alot better compared to its peak in Februarary. I bike for about 20 mins 4-5 days a week just to purposely break out. Break outs are less frequent and when i do break out alot less intense but still very bothersome. Overall, taking in consideration both intensity and frequency I would say 60-75% better depending on the day. O ya, remember to post if you have taken accutane or not.

Hello All,

I posted on here a while back. I have textbook CU. I am 38 and have had it since I was 20. 18 years of it.

It was triggered during a stressful period and it has got worse as I have got older. When I was younger and fitter I was able to manage it by exercising and kind of burning it off for twenty-four hours. Not now.

I am lucky that antihistamines work as an effective preventative, though not a cure. Clarityn, Zirtek, Xyzal all work - though I think they cause weight gain.

Anyway, I was given a lot of drugs as a teenager for my acne. These were

TETRACYCLINE
OXY-TETREACYCLINE
ERYTHROMYACIN
and
RO-ACCUTANE

Ro-accutane is famous for its side-effects. It is a very strong drug. I had always blamed my CU on Tetracycline

Please post if at any time you have been given these drugs.

One poster before mentioned Erythromyacin.

My theory is that these drugs were the cause and the stress was the trigger.

I remember getting the most aching body and muscles during the roaccutane treatment - and I 'm sure I suffer now more than average with aching body parts.

Thinking back, I might have already had CU before taking Ro-accutane, but the condition definitely worsened after.