Cholinergic Urticaria (heat Hives) (Page 23)

I am 99% sure that CU is connected with sweats, because i do get hives when i go to sauna not immediately when i enter sauna, but when i start to sweat. When i take immediate very cold shower after sauna the itch and hives are much more than when they were when i was in sauna. But prior i discovered why CU is connected with sweats is that when i was in sauna somehow sweats got into my mouth and immediately my tongue started to itch and burn, at first i did not understand why, but then i understand that in mouth normally are no sweat glands and no sweats, but when they got there began the same process that with CU. My doctor also made a skin test with my own sweats and guess what it was positive, although he wants to do the test intracutaneous to be 100% sure, because he just picked from me sweats pricked my skin and put there my sweats and after 10 min there was small lump.
There is one more thing about CU. Before one year i did electroencephalogram and there was something wrong, but not as much to start worry about, they suggested me to do it again after 6 months and now i did it after a year and it was a little bit worse than previous one and they appointed me to neurologist next month . I also found one abstract in internet where is written about one guy who has CU and abnormalities on electroencephalogram and they assumed as follows: sweat-promoting stimuli, such as heat, exercise and tension, stimulate the autonomic center in the diencephalon or brain stem, and excitation in the autonomic center is transmitted to the efferent sympathetic nerve, causing cholinergic urticaria; when the intensity of stimulation is high, the autonomic center exhibits abnormal activities and causes epileptic seizure.
I do not know what it means, but i will ask about it when i will go to neurologist.
Can someone of you who have CU do electroencephalogram test to check it if you also have this problem, if we will find one common thing that connects CU we will find answer how to treat it.
Keep fighting and searching for answers

Have you done any tests on IgE levels in your blood aivory? I think this would also show a common link between people with CU.
I can't relate to the sweat thing because along with CU for me came hypohidriosis which meant I wasn't sweating at all.
I have been clear for the last 4 months or more because the weather was warmer during the summer and like others on here, I found that seems to reduce outbreaks of CU as the body gets acclimatised to more constant heat. In the last couple of weeks it has started to return though as the weather is getting colder. I am still waiting to meet the immunologist and will post whatever information he gives as soon as I meet him.

When they carried out the electroencephalogram, did they provoke your CU before they took a reading? Is is an expensive procedure that only specialists carry out?

I remember one year ago when i went to do my first electroencephalogram i did not have a CU breakout, because i was lying in hospital and i just needed to go down one floor to do the test, but next time when i did electroencephalogram one month ago i had a little CU breakout, because i needed to go up to the fifth floor and CU came out a little bit, maybe this is the reason why the result of the repeated electroencephalogram was a little worse than the first one. I had the electroencephalogram test almost for free, because my doctor appointed it, i just needed to pay 4 $ each time. I do not think that it is very expensive to do it without doctors appointment, or you can ask to your doctor to appoint it.
About IgE levels, i am not sure, but i think that when i was in hospital they took IgE level test and it was just a little bit too much, the margin was 100 and i had 101.
Definitely post here information about what said immunologist to you, because i also will appoint visit to immunologist.
Good luck!

Hi!, I've been trying to find if there is a link between CU and birth control pills. According to the package insert, Melodene can cause urticaria in a few cases. Do you think that the fact that CU started the same time as my daughter began taking birth control pills is just a concidence or should she come of it? Dermatologist and local GP think there is no link? The usual round of anti-histamines,etc. the sweating method, etc. have not helped. We live in South Africa so it is always warm to very hot! Any Advice? Would be great to hear from CU sufferers in SA to hear what medication you take.............Thanks!

Hello to everyone.I have cholinergic urticaria for 7 years.I am 25 years old.I havent found treatment to that sickness.I search lots of things about these sickness.My doctor says my ill cause by my immune system.I have some allergy test and my doctor said my only problem is Ä°ge(immun globilin)rate is high now is 165.My doctor advice me to use immune support pills like immuzinc,imuneks,and imolina i have been using that pills for 2 years and but none of them help to lower my rate and on the contrary before i got these pills i dont have fatigue problem but now i have i have go that doctor for 7 years i thinks sometimes maybe i go another doctor but i am not sure other doctors help me too.Ä° use some anthihistamine name is aerius.i give these pill names but i am not sure in your countrys have that medicine or same name.This sickness effect my psychology too.I misery about what i missed in life .Before that sickness i am overconfident person but now i am in depression.I dont know what will i do i have to get job but i scare to get job because of that.I dont want to get that hives anymore and want to get my power before that sick.I want to run without that heat ,hives,itching,feeling ashamed I wait your answers thanks all.

Did your guys CU just randomly show up one day like me?!?! If it did, then there obviously has to be a way for it to go away just as easily, right? For me, I was just starting to run again and my CU totally attacked me! Only a year later did I find this site and figure out what the hell it was! I even get it when i get stressed...like no sweating at all, just something stressful happens. It's SO weird! Anyways, Im so happy there is other people out there like me, and Im not some crazy 18 year old girl!!!!

Hello everyone...I am 24 years old and have had CU for about 6 years. But it has only manifested itself seriously in the last year. Lets just say that last winter was a living hell for me. I had no idea what was wrong or what i could do to solve the problem. Doctors were completely useless. From this forum i heard that some people found relief through sweating. I used to run competitively all through high school and my freshman year in college but gave that up after an injury. So i started running again and found that the horrible ichyness was there for about the first 2 miles or so then it went away completely. after about a week of running in the summer heat during the day my CU was gone for about a week!. When it would come back it was very weak, just tingly and the red dots all over my body didn't show up anymore. so i found that by running or working out past the point where i would sweat the CU would dissappear for a day to a day and a half. Now that it is cold and i am so busy with school it is back to almost full force, but atleast i am able to manage it with running when i have time.

Anyone here did ige test and whats the result ?? in my last post i said my result is 165 now and i do that test for 7 years and i examine that when my morale lvl is high my ige lvl is lower but when i consume from hopelessness my ige lvl is upper.My first urticaria has started in 7 years ago when i played footbal.I didnt notice before my friend show me.when that time I have some problem with my some friends and it makes me sad. Afterwards i try to play football but urticaria come again and i didnt do sports anymore but things get worsen when i postpone activity.And in my first year on urticaria when i am 18 i went to holiday and when i feel my urticaria had come i have a swim in freezing salty sea water i did that for 3 months it help me to heal this ilness complately .Yes my ilness fade but unfortunately it came again because i had to enter the university and i had to work hard and this make me stress and before that day never went again.Excuse for grammar problem

I want to ask you one more question have you ever been some alergic reaction before urticaria? I remembered in my childhood i have that allergy 3-4 times but it gone in 1 or 2 days and i remembered one day i went to snowball and then icame to home to stove and my hands really itch .Maybe this event give me the message i will come one day and ruin your life lol.This must be genetic the chance to catch that sick increase when your father or mother have that some alergic reaction.My father had sebaroid dermatit and my mother have some alergic reaction to polen when her youthness.Last month my brother has some alergic reaction too but he heal in 2 days.

John Law it looks like our problem is same with you high ige level.You said you would go to immunologists.What did doctor said which pills he give to you and these are help to lower your ige?

Hi Kagan,
I am currently waiting for my appointment with the immunologist to come around. It is not for another 6 weeks so I will tell you what he said then.
What I do know is that there is a treatment called Xolair (or omalizumab) which mops up IgE in the blood. It is traditionally used for people with allergic asthma but it has been used to treat CU as well. Maybe you could suggest this to your immunologist. I believe that the one that I am going to has experience with its use so I will suggest it to him.
My CU has started to come back in the last month after it was gone all summer but I think I am keeping it at bay to a certain extent through continuous exercise. I run or workout in the gym everyday. I am hoping that I will not need to take medication if I can keep it at bay that way.
Your IgE level is very high, even higher than mine so you should ask your doctor about Xolair (omalizumab).

About Xolair (omalizumab)
It is very expensive drug, it costs around 10000-15000 $ a year, it is devised to people who have very serious asthma. You will have to take this drug for rest of your life, it is not like you will take some injections and CU will be gone, it will came back after a while - my doctor said so, but i am not 100 % sure that he knew all about this drug, because i read one article where German doctors treated one guy with CU, but they did not say how much injections they did and if the guy will need to take more. They only wrote that this guy had not had a single hive for a five weeks, after a xolair course. This drug is new and scientists have not yet discovered what are the side effects in long-term use of this drug. I would be very lucky if for example i could take one course of this xolair, pay approximately 1000 $ and my CU would be cured.

I want to try that Xolair too.But its too expensive for me and i scare to take that xolair in longterm because of money.Aivory so you take it only one course and your urticaria cured.When did this happen and how many day or month now you are hive free?And guys do you have some chilling,hair loss and fatigue problem maybe i have anemia.I suspect lots of things because of that urticaria
In 2.5 years ago my ige lvl is drop to 99 but my urticaria didnt care.Whats the normal persons ige lvl anyone know?I susupect ige lvls affect from physcology,undernourish because i was soldier 1 years ago(compulsory military service in my country) and when i came i test my ige lvl never high like that before and i observe when my ige lvl upper my hair loss interesting but there is some problem in my body maybe.

I think a normal persons IgE level is below 80.

I would only suggest Xolair if you had health insurance or some kind of drug payment scheme. I think you need to keep taking it but i don't know if too many people in their 30s have CU so maybe it goes away itself as we get older. Everyone here seems to be late teens or twenties.

Kagan you did not understand me correctly, i wrote that i read one article where one guy was cured in Germany with Xolair injections.
About the hair loss, yes i have it, but just a little bit, for example if you are in long-term stress you will have hair loss. You can also get hair loss when your hormones are in disbalance.

Aivory sorry to misunderstood.Yes time is the best medicine for this ilness.My doctor said this ilness have vicissitudes and our attacks severity and frequency will be lower as times go on. Unfortunately we dont know that time duration.For example me , I am a lot better now according to 7 years ago.But of course I want totaly become clean.

hey guys

i'm a 19 year old male. i've had cholinergic urticaria for about a year and a half now. it started last june or july i think, when i moved to a new house after graduating from high school. it started out as just an itch that made the affected areas (my mid and upper back and upper chest) really red. i didn't know what it was but it didn't hurt or anything, just an annoying itch.

one day i was outside picking up some leaves. i'm not really sure when it was, but anyway when i started picking them up i started getting that itch again. i didn't want to scratch it because i had gloves on and they were dirty lol. it got too annoying though, so i rubbed my back slightly and BOOM i dropped to my knees in pain. i was so scared because it was so painful and i was embarrassed because i was outside where anyone could see. i walked into my house and ran to the bathroom but my brother was in the shower. i went to my room and threw off my shirt and laid on the hardwood floor. it started feeling better and when my bro got out of the shower i wet my shirt and finished picking up the leaves. i didn't tell anyone what happened, not sure why. i researched it but i couldn't figure out what it was.

after that, it was always painful, rather than just itchy. i tried to live normally with it but it was too hard. i stopped doing anything, and couldn't even step out of the house without the prickly feeling. after a while my family began to gradually see what was wrong with me. i don't think they knew how severe it was, but i couldn't explain it without getting itchy so i just let it be. my parents were/are very supportive of me though. i ended up moving back to my old house, where i am now. the symptoms stayed and are still with me currently, after living here for about a month and a half now. however, it has been getting better lately. for about 2 weeks its been pretty good, although i still get breakouts sometimes. i don't know if its getting better or if it is circumstantial or what.

one thing that i felt really helped me was when i figured out what i had and discovered this forum, about 3 weeks ago. my mom used to research all the time for me, because it was hard for me to look anything up without breaking out. she found cholinergic urticaria in one of her searches, and showed me the symptoms. i immediately said thats what i have. so anyway, i found this forum the next day and man it was such a relief lol. i felt like a huge load was taken off of me. i used to think i was some kind of anomaly or something lol, but reading all the stuff on this forum really helped me psychologically, and i want to thank u all for that .

also, one time i went on vacation to disneyland with my friend and his family. i was kinda scared when i was going because i didn't want to break out over there. i went anyway because i didn't want the breakouts to control my life, even though its hard for them not to. anyway, i did itch a couple times for the first two days, but for whatever reason when i'm in public i can somewhat control it. i think its because i don't panic, as opposed to when i'm at home and as soon as i feel anything i run to the bathroom or whatever. anyway, i itched the first couple days, but the last day or two, i was completely itch free. it was weird because it was extremely sunny while i was there, which is the type of weather that seemed to foster my breakouts. when i arrived home i felt "cured". after a few days it came back though, just as bad as before. i concluded that it was that house that i was "allergic" to, which is why i moved back here. however, after reading some of the posts here, i figure it was probably because my body's histamine supply was depleted.

for the last couple weeks (ever since i found out what i had) i have been taking benadryl (well the cheaper version of it). i have also been trying to exercise a bit, after reading that it could help. before, i was too terrified to do anything that would cause me to breakout, but i've been trying to muscle through the pain when i exercise. its been getting better, and i only itch when i get really uncomfortable, or when i'm playing basketball outside, which is a far cry from what it was like before. also, i was out from like 10 in the morning to 10 at night the other day, and i started itching a bit. i figure that it was from the cold or something, i'm not sure.

sorry for the long post, but i'd also like to add that i used to play basketball ALL the time, before i moved away. i also really did not want to move away from this town because its where i grew up and my life is here. so when i moved two things happened. 1) i must have been really stressed from moving away from my friends and stuff, although at the time i guess i either didn't admit it to myself or didn't care, but looking back i bet i was lol. 2) i stopped playing basketball for months, after playing it all the time. one of these things may have caused me to develop cholinergic urticaria.

again, sorry for the long post. its ok if u only scrolled down to the bottom lol i wont be mad. just wanted to share my little story. i'm not saying i'm cured or anything, but i am feeling better as of now . good luck to u all. and one more thing, i beg u all not to lose hope. i'm not a suicidal kid or anything like that, but man a couple times when things were really bad i guess i just wished i hadn't been born. this forum really helped my confidence though, so just keep ur heads up people .

wishing for a cure, and hoping u all live a quality life
MO

Hi! So glad to come across this forum. I was diagnosed with CU this week - I also have Cold Induced Urticaria. I am JUST beginning to break out in hives every time I sweat or are in extreme cold (went dog sledding and skiing had gigantic hives everywhere for over 24 hours). This is truly an annoying condition and I must say I am discouraged by the fact I could have this condition for years.

Just like JLCartoon, I too (for as long as I can remember) would get the weird tingly sensations all over my body that made me want to scratch to the point of bruising or breaking my skin- but the scratching never helped, in fact the itch got worse. It would start on my ankles/shins and move up my body, but only if I scratched - if I left it alone and tolerated it, the itch would go away. Everytime I mentioned this to Dr.'s they always attributed this to skin care products I was using, or random skin allergies, but I knew this was not the case, it was SO frustrating! BUT now, it seems this is a pre-cursor to CU and CIU.

I took Claritin, it didn't work, currently on Zyrtec, which works a little. Immunologist gave me a persc. for some other antihistamine (haven't picked it up from the pharm yet)...I am hesitant to drug myself up. I am VERY interested in homeopathic treatment and acupuncture. I live in the Northern VA/Washington DC area - can anyone recommend where I should go for these treatments?

Thank you for your help.

hi everyone, it's been years and years since my CU began, I think around the age of 16 it's difficult to know for certain. And now I'm actually growing out of it, I hardly take any loratadine anymore (which is the only med that I know of that blocks my hives completely). I only take loradine now a 2-3 weeks apart opposed to 3-4 days apart when my hives were in full progression and extremely itchy.

I can still break out around my face, neck area in red spots and maybe a couple of spots around my stomach, underarms, sides and this could be 2-3 weeks without loradine, and it's very itchy as opposed to a full body break out just 3 or 4 days without loradine, therefore, the hives are slowly receding. I havn't really altered my lifestyle to change the breakouts, but I guess it's the body's chemistry changing. And who knows I might just have mild hives for the rest of my life but it is certainly better than a full body break out.

I also don't do anything physical and now I work at a desk to keep me calm, but recently I had a mild break out when I was nervous, so a lot of factors attribute to break out - mental or physical stimuli.

To qwer07, have you tried loratadine or claritin? Might help. Goodluck everyone!!