Monday, September 14, 2009

Cold Hives (cold urticaria)

Some of my friends know I have a medical condition where I break out in hives when I get chilled. It's called Cold Urticaria. It doesn't have to be very cold to make it happen, I have had a miserable case of hives while in California on a warm summer day at Disneyland because I got splashed on the log ride! And I often get it on my hands while doing my morning chores outdoors, like feeding the chickens, or just from walking around barefoot inside. I keep towels on the floor in the bathroom to avoid stepping on the cold tiles. The hives can be the size of a pencil eraser, or several inches across, and if I get too many I start to feel woozy because the hives are actually fluid that is pulled out of the blood, causing low blood pressure. So it can be a pretty serious condition, in addition to being itchy!

It started about ten years ago, shortly after we moved to our farm, and I was out mowing the field on a regular cool day (we do live in the NW, after all) and got itchy bumps all over my upper body. I had no idea what was going on, it was freaky. Later I got them on my feet, and it hurt to walk on them, I remember spending a miserable evening on the couch wondering what was going on. When I asked my doctor (I had a doctor I really liked at the time) she thought it was weird. Eventually we figured out it was the cold that was doing it. There was no reason for it to happen, some people just suddenly get it, and no telling if I would eventually out grow it. She tried some anti-histamines on me, and eventually we settled on Claratin, which doesn't stop it, but takes the edge off. I always keep a few pills in my wallet.

It doesn't sound like much, but it seems to effect everything I do, from the moment I get up in the morning, to bedtime. I have to constantly consider the weather, where I'm going to be, what I'll be doing, if I should take a Claratin to ward off any potential hives. And I'm pretty scatterbrained sometimes, so it's hard for me to remember to think ahead. Even after ten years of dealing with it I'll do something I shouldn't and end up broken out and miserable. Last week I dozed off in the shade on the swingchair after work, and even though it was a beautiful warm summer day, I broke out something fierce! Cool airconditioned rooms in the heat of summer will set it off. Getting sweaty on a breezy day will do me in. I don't even wear my wedding ring anymore because my fingers frequently swell up with hives and then it's too tight. I can't pick up metal tools in the garage without gloves on on a cold day. I can't spend the evenings outside using my telescope without being bundled up like an arctic adventurer.

The doctor I liked moved away a few years ago, and last year I tried a new doctor, and when I told him about the cold hives he completely blew it off with "I've never heard of anything like that". He shut me down so fast I wanted to cry. He had no idea how serious it was, and with that attitude, he certainly wasn't going to be any help.

Yesterday I was surfing for any new info on this condition, and the wiki article linked above has a reference to a medical paper I had not seen before, which indicates a particular medicine might be helpful. I looked up that medicine and it's now available OTC as Zyrtec. So I got some yesterday and took it, and all afternoon and evening I was out playing with the dog, checking on the chickens, doing this and that, and not once did I feel the tingle of hives coming on. After dark I was sitting outside on the swing chair in a t-shirt, amazed that I was not breaking out. I was really impressed, I think this is much better than the Claratin. I wouldn't wish this condition on anyone, and there's no reason I got it, and no telling when it will go away. If I can find medicine to make me feel better and not break out in hives at the slightest chill, that would be a significant improvement in my life!

14 comments:

Goofy said...

Wow!! I know how frustrating it is to have a doctor tell you that the results came back normal, you don't have a condition even though you have all the symptoms, it's all in your head, blah, blah, blah. WHEN will these doctors actually LISTEN to their patients? Shouldn't we know our own bodies by now???

So glad the Zyrtec seems to be helping!

StefRobrts said...

This guy was just a bad doctor all the way around. Unfortunately I've had one doctor I liked, and I had her about three years before she moved somewhere else. Otherwise none of them have been memorable, except for occasionally being memorably bad. Luckily I'm pretty healthy, so far!

Lois Grebowski said...

ask your doc to see if you can take a zantac or pepcid with the claritin. Those are antihistamines as well, just a different kind... may help with the hives.

StefRobrts said...

Thanks Lois. I'll look into that.

Laughing Orca Ranch said...

I was just going to comment that your Dr. was weird for saying your condition is weird. And then you mentioned all the side effcts and the blow-off attitide of your second Dr and I was stopped in my tracks. Wow! What an ordeal, especially when you're suffering and noone seems to understand and the Drs don't take you seriously.

Isn't Zyrtec and Claritan allergy meds? Is this condtion related to allergies or do these meds just reat the allergy-like symptoms?

I'm glad you're gettgin some relief, though and a better quality of life.

~Lisa

StefRobrts said...

Yeah, it's totally an allergy - the body over-reacting to an outside stimulus. In this case, it's cold, but it's similar to people who are allergic to bee stings. Mine has never been THAT bad, thank goodness. No breathing problems or anything.

It's kind of interesting that the medicines block the brains reception of the signal that tells it to take action - which is the anti-histamine part.

Mer said...

That is really interesting. I have have never heard of this condition before.

I am glad you were able to find something that seems to work! :)

merf said...

Thanks for posting this and I'm glad I found it... my son (9) has cold urticaria so bad that he has gone into anaphalactic shock and has to have an epipen. It is very hard to find people with this condition, especially people with such a severe case as my son's. I'm sorry you suffer from this as it seems to be terribly uncomfortable and frustrating. My son takes 1 zyrtec once/day and also has to use his preventative asthma med every day.. the cold urticaria sets off his asthma. Again, thanks for posting this info.

StefRobrts said...

Hi Merf, I'm sorry to hear your son has it so bad! I'm so thankful I have gotten off relatively easy. It is a miserable condition, and people act like you're crazy when you say you're allergic to cold! I hope your son outgrows it so he doesn't have to deal with it forever!

Cold said...

I'm 38 and suffered for over 15 years. In process of setting up site to help fellow sufferers.

You must see http://www.ksl.com/?nid=148&sid=4826394

Keep blogging about this - lets get the word out.

StefRobrts said...

Thanks so much for that link. I hope the researchers can find something that works. It's just good knowing someone is taking it seriously and trying!

caresearch said...

you probably have an underlying medical condition. in my late teens i came down with cold urticaria, and found out i had graves disease. the doctor said, urticaria is usually a syptom of another illness or possible food agents/ allergic reactions to something in your environment.

StefRobrts said...

Back when I had that doctor I liked she did a bunch of lab work on me and couldn't find anything.

If the gov decides to get their act together so regular people can afford health care again, maybe I'll have a doctor who can look into it again. Until then, I'm on my own.

marianne said...

Hello, I have been getting hives since this summer after swimming in the cold ocean. I have been getting them ever since. Its terrible. I have to cover ever inch to even go out side or i am itching with hives. I have no insurence and know they will run lots of tests if I go to the Dr.