Cholinergic Urticaria (heat Hives) (Page 11)

Thank you Twicken2 for your comments.

I just wrote a huge reply then my computer lost it. 2 things i don't understand CU and computers =)

If anyone hasn't seen this short cut, I suggest you have a look.

It will give you a better understanding and answer some questions (maybe).

At least its the best description from a white coat (doctor) I have ever had.

Enjoy.

S1


http://ehealthforum.com/health/viewtopic.p hp?p=493571#493571

Just a note. The part in question is the second and longer post on the page.

Well heres my case:

I first started realizing something was wrong about 2 years ago. I used to be very into sports, and every time I began doing my warm-ups (which is usually stretching followed by jogging), I'd start getting all itchy on my face and head, and sometimes on my chest. I had a very strict coach, so I was always forced to bear with it and it always disappeared after I started to sweat. At the time, I didn't think anything of it, I just thought it was odd and I was kind of embarassed when people were staring at me during the warmups because I'd be scratching myself and getting all red.

It was like that for a year. The summer was okay I presume because I was able to sweat a lot, and I did a lot of travelling to very hot places. Soon after, winter starting rolling around and my new school year began. It was still bearable for the first semester, it wasn't until second semester that I began to get really worried. I'd be sitting in lectures and I'd suddenly feel prickly feelings all over (no hives yet), and I'd do anything like rub my back against the chair to try to make it go away. It was mainly my chest and back now, not my head. Sometimes, I'd even get up and go to the bathroom to put water on myself to cool myself down, sometimes I'd even go outside to drop some clean snow down my shirt and sit in the freezing cold without my jacket. I'd feel better after doing that.

So natrually, I went to the doctors and did a bunch of blood tests and everything came up normal. He really didn't know what was going on, he's never seen it before, so I urged him to recommend me to a dermatologist. I went to the dermatologist and she immediately diagnosed me with CU after hearing my symptoms out. This happened in April, right as my year ended in school. This is also when the hives started appearing on my arms, chest, stomach, and back. She put me on Reactine, but that didn't help at all.

Since then, my CU has gotten a LOT worse. During the past three months, it's gotten so serious that it scares me to even think about it. I'd get attacks when I sneeze a few times in a row, or when I get excited with talking to someone I haven't seen in a long time. I'd get attacks when something makes me laugh out loud, and when I get angry at something. I carried cream wherever I went. Whenever I go outside now, I'd almost immediately start feeling the CU coming, and soonafter, I'd begin seeing hives all over my body.

I can't drive anywhere anymore, even if my A/C is blasted to the max. The sun beating down on me during the hot summer weather makes it so that I have to put on cream WHILE I'm driving, otherwise, it's too unbearable to concentrate on driving. It's too dangerous so I haven't driven anywhere in a long while. I now force myself to stay at home in my A/C'd room. I've had to give up my summer job, cancel my vacation plans, and haven't been able to meet up with any friends because I don't want them to see the CU. I might miss my sisters wedding and possibly even next semester if this keeps up... it's that serious. I'm itching a bit as I'm typing this, it's probably from the stress I feel sometimes when I worry about it.

So far, I've tried a lot of things. I've tried a colen cleansing diet. Basically, I drink 5litres of water a day, combined with a lot of apples and selected foods recommended by a chinese doctor. On top of that, I've also tried a bunch of chinese medicines, western medicines, and even ginseng extracts. I've also tried acupuncture and hydro-aroma therapy. Nothing has been helpful so far. I've read this entire forum many times during the past few months, and recently I've tried to get out and just bear through the hives. So far, it's not working since the prickly feeling gets so intense that I'm forced to stop and run inside and rapid-cool myself. However, I'm determined to keep trying this as I don't want CU to stop me from doing whats important. I don't want to miss my sisters wedding and school, so this week and next week, I'm going to keep trying. Today I was able to run for less than 5 minutes and I felt like I was gonna faint and I wanted to inflict pain to myself to divert my body's attention to something other than the intense prickly feeling.

One thing I've wanted to ask however, especially to the people who have rid themselves of CU.... do/did you guys apply cream/moisturizers to yourself? I find myself applying cream/moisturizers whenever I feel my body is getting really hot to rapid-cool myself to prevent the CU attacks. I try not to use water as if it evaporates it would dry out the skin and possibly make the CU worse. However, do you think I should stop using it? I've tried before, and I only use the moisturizer during really intense attacks now.

Anyway, despite everything, I'll try to update myself here if I see any improvements, or if it gets worse. I have a hospital appointment next month (waited since may), and I'll ask about the UV thing. Is it covered by health insurance by any chance (or is it expensive)?

By the way, I now get CU on my chest, stomach, back, shoulders, arms, butt, hands (except for palms), legs and thighs, and feet (except for soles). Basically, my entire body except for the soles and palms of my hands and feet. It appears to have been spreading over the past few months, so I'm afraid it'll spread to my face soon too.

I'm 19. It's been really hard so far... I've tried to go out to run twice this week. The first time I was able to push through the hives for about 3-4 minutes running up and down my street, but it was too hard to overcome and I had to get myself cooled down because the torture was insane.

The second time (today) I went out and tried to run with sweatpants and a sweatshirt, and I lasted around 5 minutes before I felt like I was going to collapse. A friend I was running with had to take me inside because I was trembling.

I'm going to try again tomorrow, and keep trying because I'm missing out on things that are too important me. I'd also like to ask the people who ran through the hives in the past, how long were you able to push through the hives for? And, was the amount of CU attacks noticably less after you continued to use the sweat method?

PS. I'm not using any western medication at this time. Currently I'm taking vitamin pills, ginseng extracts, and following a colon cleansing diet. I believe it's best not to mix too many medications together, and antihistamine pills haven't done me much good in the past (Reactine, doctor said it has the same effects as Zyrtec).

Hey NDS,
From the sounds of it, you're able to sweat normally now? If so, I'd love to congratulate you on that! It gives me hope that I'd be able to go through it now too if I keep trying.

Now that you can sweat, it still sounds like you get the CU attacks. Have they not gone away?

I'd like to keep everyone who's reading this thread up-to-date on how my condition and efforts on coming through to sweating have been going.

Today was my 4th day of running. It's hard to say to myself, someone who was in top shape and one of the longest distance runners in the school, to start getting exhausted after a few laps around the field. I've been running for 20 minutes a day. Maybe 10-15 of that is actually running, the other 5-10 is sitting/resting. I get huge attacks while I run, and I try to ignore it as I'm running with a friend and he encourages me by talking to be while we run to divert my attention to something else, but nonetheless, it's not something to easily be ignored.

Four days have passed, nothing but hives. Honestly, to tell you the truth, the attacks don't seem to be decreasing, nor is the torturing prickly feeling. However, I do somewhat feel more tolerable to it. Perhaps because I've been running through it for a few days, when I'm sitting and I feel the attacks, I don't cringe as much as before, and I don't tend to need to put cream/water on it to cool it down. I can sit through it until it disappears.

One thing I'm sort of excited about today after my morning jog, isn't exactly what I was hoping for, but it's a start! During the jog, I wasn't able to sweat, and I had to take a lot of breaks because my fitness level has taken a nose-dive since I started getting CU attacks. But today as I'm typing this (just got home 5 minutes ago), I'm sitting cross legged and I started to feel heat behind my knees. To my surprise, theres a hint of SWEAT!! Yes, sweat! It's not a lot, but as strange as this may sound to any person without CU, I'm excited to feel sweat on my body after not having it for so long! Though it's not visible sweat, as in if you ran your finger over it, it wouldn't get wet, but I can feel the sweat when I touch it, and it has the sticky after-workout feeling I used to get before I had CU. This is progress in my opinion, and since I've been trying to keep an optimistic feeling towards things in life now, I'm going to use this as encouragement to keep pushing on the jogging for the next while!

I encourage people who really want to overcome their CU to start getting on a daily jogging schedule like I am. Mind you, it's probably going to be VERY torturing, but if you keep at it, things just might get better. I'll write back about my further progress soon!

It's been a while since I've posted on here but after reading these posts I felt compelled to give you guys an update.

When summer first came around and the temperature began to rise I thought I was gonna die. My CU flare-ups felt like they were worse than ever. One time I recall riding my bike to see if I could work a decent sweat to get rid of it, but with the sun beaming down on me and the fact that my upper body wasn't getting as much of a work out the CU was devastating. I wanted to veer off the bike path and straight into lake michigan (ew) just to cool off.

Shortly thereafter I started going to the gym about 3 times a week, doing 20-30 minutes of cardio and weight lifting and now while my CU still resonates it's less intense than before and quite tolerable.

During the first few times it took a while to sweat it out but eventually it got easier and easier. I also sit in the steam room for about 5 - 10 min once a week to sweat it out even further. I'm at the point now where the CU still lingers but it's only a slight convenience. Sometimes it's not bothersome at all.

I'm hoping that if I keep up my exercise regimen during the winter it'll keep the CU at bay during a time when it's known to be at its worst.

I still haven't consulted a doctor yet but I plan on seeing one soon just to see what kinda BS they might tell me.

Good luck guys.

Just something I'd like to note about doctors for those that are wondering.

Like most people who have CU, I've been to many specialists and doctors. If I don't count chinese doctors/practionioners, I've been to 3 regular doctors and 2 dermatologists. I have an appointment to check my liver just incase there might be an underlying issue that may have a link, and hopefully, I'll be able to find an immunologist soon too.

Between the 3 regular doctors, I've been to probably 20 appointments in the past few months. However, before the dermatologist told me what I had, the doctors thought I was a "oddball" patient, and they've never seen it before. Even after seeing a derm, they still don't really grasp the idea of CU, and can do nothing to help.

Between the 2 dermatologists, I get really confused. The first derm I saw immediately told me I had CU after hearing my symptoms. I was relieved at how fast she was able to determine what I had, and thought perhaps she could prescribe me medicine that would help it. Alas, her medicines didn't work or help at all (Reactine, antihistamine medicine). The second derm learned that I was using Reactine. I told him about my case and how Reactine wasn't working for me, hoping he would provide me with a different drug. However, he told me perhaps I should try NOT using antihistamines and wait for the body to re-adapt itself back to normal and have the mast cells fix themselves. Listening to that made some sense, but then again I have NOT been using antihistamines already for 3 months now, and it has only gotten worse.

I just find it strange that even dermatologists don't have a set way to treat CU. From what I've read, most have been prescribing antihistamines (different kinds), and some have been helping and some haven't. When I asked either one how long this lasts and what causes it, they can't give me a straight answer. But I know since I've been reading up on this for months now that there isn't really a cause (idiopathic), and it can last a long time (I don't want to scare you, but I've read someone had it for 30 years).

From my own experience, so far, doctors haven't been a whole lot of help, yet the sweating method seems to make my CU flare-ups a lot more tolerable. I still get them nearly as frequently, but I can start seeing it getting less frequent and when it does happen, a lot of times I can tolerate it, unlike before. But I've only been running this week, so far, 4 times, so the progress and outlook is good. I'll update you guys more about my condition soon as I'm still trying to sweat out method (it's painfully torturing, and discouraging to run in the beating sun), and my liver specialist appointment is coming up in a few weeks.

Hey guys, I haven't been here in a while...superman88 your situation sounds almost exactly like mine...I suggest taking a detox bath before working out again to sweat it out.

One bath that I used was made of Epsom Salt, Baking Soda, Vegetable Glycerin, and Sea Salts.

I wasn't able to work out at first because the pain was unbearable...but once I did this a few times and then got out in the hot sun, the sweat just started POURING and, more importantly, the itching was gone.

I'd say as it stand, my CU is virtually non-existant. It spikes up slightly during the winter because there is less perspiration, but that's nothing a good steam-room, hot-tub or brisk run with a wool cap (if your head is warm, the sweat will pour out through your head first...my head itches before anything else) can't fix.

If you have any questions, feel free to PM me.

Quick update on my condition.

The bottom half of my body can sweat now (legs, feet, butt, etc.), but the upper half of my body still isn't there yet! :<

My arms get damp when I'm in a very humid area or if I go running to try to do the sweat-method. Something else I've noticed about this is it's not a lot on my arms... and I get tiny bubbles of liquid on my arms that are about the size of a grain of salt. If I poke at it, it would pop and the liquid of what I can only assume is sweat comes out. It only seems to appear when I'm in an environment that promotes sweating. My own hypothesis about this is that the damaged layers of skin tissue (which haven't experienced sweating in a long time) iis trapping the sweat in, and it forms the bubbles. Of course, that's just my guess. But, it's still just a damp sticky feeling... I wouldn't call it sweating on my arms just yet.

My head, chest and back are still not able to sweat. They are always dry, which annoys me because they are the only parts on my body that isn't showing any improvement at all.

Anyway, I've been running for 10 minutes, 3 times a week. It's gotten a lot easier since I first started, and now I can safely say I don't get as much CU attacks as I did before. I still get itchy and prickly, but it's not as intense or as often. But it's still enough to be a problem. I can only attribute this change on my CU flare-ups to either the sweating method, or my new medicine my derm put me on (Hydroxyzine, 25mg/day). Anyway, I hope you all at least try the sweating method (even though its like torture) and see how it works for you! I'll post more when I feel I need to.

Good to hear you're making some progress. A warning though, hydroxyzine will make you very drowsy at first. I remember sleeping through classes/lectures because of hydroxyzine, but I was on an insane dosage (25mg three times a day, what was the doc thinking....).

Quick update. I haven't run for 2 weeks now so i have not really sweat much. I've just finished four out of six weekly treatments of accupuncture and I must say there is a great improvement. I've also been using some chinese medicine as well. I was just doing some eBay stuff and moving some boxes around and the itching still acts up but not as bad. I was playing ball at the beach yesterday and no itching at all. I would recommend anyone with CU to give accupuncture a try, it doesnt hurt but there is the occasional pinch sometimes but once its in you wont even know you got 2 dozen needles sticking outta you. Look into your insurance and see if accupuncture is covered, otherwise you may have to shell out about 300-400 bucks. Once my full treatment is done ill update if it work 100% and if it will last after the treatment is done.

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...