Allergies Forum - Cholinergic Urticaria Is Ruining My Life. Help.

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Q: Cholinergic Urticaria Is Ruining My Life. Help.

asked by: Duper on June 18th, 2006

New User

Background: i'm a sixteen year old high school student living in new york. I developed this condition back in january when I had my first outbreak whilst walking to school and itching unbearably. I have always had problems with stress, but in january, the stress was overwhelming...I found this website a couple months ago, but haven't decided to sign up until now. Also, no one in my family has this disorder except me.

I can't do things I used to take interest in. I used to be a gym rat and worked out constantly. Now, I can't exercise for 10 minutes before the itch kicks in. I can't go out, it's 95 degrees outside as i'm writing this, I can't stay out for more than 5 minutes before the welts pop up. I've cut off friendships simply because I thought they were pointless/ caused stress. I am becoming a recluse and I can't do anything to fight it.

I went to my doctor in march and was perscribed hydroxyzine. It caused all the zombie-like symptoms described on these forums. I couldn't stay awake in class, anti-social, etc. I was on hydroxyzine for about 5 weeks, when I finally decided to stop taking it. It had only helped me deal with the itching, the welts were redder, larger and generally, more noticeable while I was on hydroxyzine.

I'm still having problems with stress (the same problem that I initially had to deal with in january), which is why I don't think i'm getting any better. Currently, i'm not on any antihistamines/vitamins, nor have I gone to a dermatologist or anything yet...

It's really distressing to not know anyone I can talk to about it in real life. It's even more distressing to learn that a) there is no cure b) people have lived with it for 20 years. Although, it is relaxing to know there are others like myself that can be found on this forum.

I'm trying to take the opportunity while school is out to get rid of (very unlikely, I know) or at least make this more tolerable. I have 2 and a half months to do the most I can. Any advice will be appreciated. Thanks.

Replies(10)

Sean3000

replied on June 19th, 2006

New User

Duper,

i used to suffer with cu and its now gone. Refer to my previous thread "c u no more".

People can suffer with this condition for a number of years, however this is very rare. Infact in most cases cu shouldnt last any longer than 6-7months.

I have been taking a new med called 'xyzal' its very simalar to zirtec (certizine) but is the second generation medicine 'levocetirizine' (if you remember back to chemistry lessons, an isomer). I found this drug very effective, its also none sedative and doesnt have any other side effects.

I would also recommend taking a vit b suppliment every day and look into accupunture.

Another thing would be to re-evalute your diet, make sure your getting the right amounts of efa's and vitamins and stay away from those e-numbers and spicy foods.

In your case obviously the stress isnt helpng and the anxiety is making it worse, I would certanly look into some sort of stress managment techniques.

Duper

replied on June 19th, 2006

New User

Thanks for the reply, sean. I'm unfamiliar with "e-numbers" being that I am in the states. I am very happy for you (and quite envious) that you've managed to cure your c u.

I am planning on seeing a specialist within the next 2 months, possibly acupuncture. I am also planning to run for 1-2 hours every morning over the course of the summer. Is it advisable or should I reconsider it?

Sean3000

replied on June 20th, 2006

New User

Hi,

yeah try to go for a run, if you start to break out dont force the issue and dont be to dissapointed if you have to stop.

E-numbers are colourings in foods and drinks and are present in almost all the bad foods we eat, the e's to stay away from are :
e102 tartrazine (in anything coloured yellow)
e210-220 benzyoate (this is found in spicy foods)
also stay away from asprin, dried fruit, tomatoes and chocolate.

Hope this helps!

Duper

replied on July 18th, 2006

New User

It means a lot of posts have gotten deleted....Meh

i have noticed my allergies getting better in the summer. I still get the welts but the itching has been reduced dramatically.

Duper

replied on August 8th, 2006

New User

I'm in china right now, my rural province seems to have become sort of modern, I guess. I went to see the specialist (skin care center, extremely popular, many many patients everday). Being that cu is rare, I think the guy I talked to didn't know much about it. I don't mean to toot my own horn, but i'm pretty intelligent. I don't think this guy knew what he was talking about. I recieved a shot and antihistamines, he told me this would be the cure after several visits and to stay away from seafood and cold food.

Cold food? I don't think cold food matters, if anything I should stay away from hot food (in terms of temperature, I know to avoid spicy food). I stayed away from seafood/ cold drinks, took the pills for a week. No difference. Extremely dissatisfied with his "professional" opinion, I was reluctant to go to him again, btu my parents suggesed one more visit. I went, got a different shot, same antihistamines and a vitamin e supplement. Took the antihistamines and broke out in hives. These weren't like the hives from cu, I was allergic to this medicine. It looked like a rash. I stopped taking the medicine, rubbed a cream onto the hives and now they're better.

From what I can tell, the cu has not improved. The humidity this time of year is definitely helping, but cu is still very much a hassle. I won't be seeing the specialist again, pointless in my opinion. When I get back to the u.S (2 weeks), i'll start a low histamine diet, take a multivitamin, calcium, magnesium supplements, and continue to take my fish oil supplement. I will begin weight lifting again in september, i've probably had, at most, 5 workouts so far this year.

I don't know about antihistamines, i'm reluctant to take them. It's just dependence on temporary relief. It feels like i'm going in circles, i'm going to try to be as methodical as I can in term of treatment. I'll try the natural way and then maybe if that doesn't work out, switch to antihistamines.

Sean3000

replied on August 8th, 2006

New User

Hello duper,

i replyed to your pm but im posting here aswell incase anybody else finds the information useful.

Really bad news the specialist wasnt able to help you but dont be downhearted, there are plenty of good specialists (derms) out there its just a matter of finding a good one (by good one I mean one who has dealt with cu patients before)

im not a doctor (just yet!!!) but I wouldnt advise you to stop taking antihistimines, alot of people are mistaken, thinking that antihistimines are the cure for allergic reactions, there not they are just a relief and different people react in different ways to antihistimines (hence why theres so many of the damn things!!) for example an antihistimine that works for me may do absoloutly nothing for somebody else suffering with the exact same condition.

Try different antihistimnes and try to find one that works for you (i can more or less guarantee you will find one that at least gives you some relief. Also try to eliminate things that may be aggrevating you, keeping a diary works for some people, cut back on hot showers and try to retain your bodys natural moisture.

Another quick point to make, starting a low histimine diet doesnt tend to work beacuse more or less everything we eat contains histimine, one thing you could do is avoid 'histimine releasing foods' the main culprits are eggs,tomatoes,strawberrys, nuts (your common allergies).

Good luck!

Regards

daydreamgonnamakeit

replied on February 26th, 2009

New User

Duper

I had a onset all of a sudden when I was 7, I am now 29, over the years I was unable to find any treatment for it, but a couple of years ago a allergist recommended allegra ( the name brand) and zantac during the morning and then a zyrtec and zantac at night, This has been the only thing that has ever helped me and I can break out multiple times a day. it really embarrassed be as a kid and as a teen who didn't know how to explain or even want to explain it for that matter. The generic allegra( fexofenidine) didn't work really well but name brand did, your parents can take you to the allergist and it should be a easy affordable RX, when I first started out, I paid about 100 per month for Allegra and 80 for zyrtec each month, now that zyrtec is over the counter, its more affordable so have your parents take you and you can even try the zyrtec/zantac ( yes the heartburn medicine) combo as the zantac gives it a extra boost and theres no drowsiness from either medicine. Still looking for a sure cure or to grow out of it but until then, this will have to work

Rapturous38

replied on May 4th, 2009

New User

Duper,

I to have an extreme case of cholinergic urticaria. I have been on more pills and cocktails of pills from zantac, singular, tagment, hydroxyzine, xyzal, prednisone, doxepin and a list of others.

I am in the same boat as you as an activities. I can barely vacum my room or clean without breaking out in hives. Summers are the worst as for the most part I have to stay in an air conditioned room. I have had this for 10 years and no signs of hope. This is my first post on this as I am finally coming to terms with no cure and just having to live with it. Just like you its nice to know that I am not the only one with this as its hard just to do day to day stuff.

I also have one more part to the equation which I dont know you if you do or anyone else reading this. I do not sweat at all. I have read that some people that have this is because they are allergic to their own sweat. With blood tests and everything else I check out and am the healthiest unhealthy person around.

Best of luck with everything.

joeshep

replied on July 31st, 2009

New User

I have had this condition since I was about 13 years old. I am now 22.

This is something you NEVER get used to. You'd think after all these years my body might have built up a bit of a tolerance to it but no. It's horrible each and every time, the only thing i've excepted is that there's no cure for it. Like the poster above me has stated, anything as trivial as vacuming my room sets it off a horrible intense itching sensation beneath the skin and it's not like you can scratch it either. People wrong mistake me for being lazy cos I try to avoid anything which sets it off which is most things. It is impossible to explain to people how bad this is, even doctors. Tried loads of antihistimines and they are all just as ineffective as the other.

I do not sweat either. At all. At the height of an attack if you were to feel my back it is scolding hot. The only time I sweat is if it is a hot summers day (the heat just seems to force the sweat out of me), or if I excercise past the pain to a sweat. Which is all well and good having the will power to do but it isn't as simple as that. I've had blood tests and apparently i'm perfectly healthy.

So yea. No choice but to deal with it. Horrible, horrible condition.

dustin_kirk2005

replied on September 18th, 2009

New User

Cholinergic urticaria

Allegra works for me. I tried the H1 receptor antangonist Claritin and combined it with the H2 receptor antangonist Zantac, which didn't work. Allegra worked for me to the point that I was able to travel all summer going to the grand canyon, california, and many other hot locations. I noticed when I forgot to take the medication I would regret it all day with urticaria break outs. Allegra is sometimes a hard perscription to get, because of its cost insurance companies will want you to try cheaper medications first.

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