Hi, I’m new to the cholinergic urticaria community. I’m currently in the stage where I’m trying to read through some of the things that have worked for other people in order to figure out where I should start in my own treatment search.
I was wondering if we could set up some sort of poll where people could vote on which things caused at least 90% relief. We could have a main poll with general things (diet modification, sauna, antihistamines, anti-anxiety meds, etc.) and then other polls for each category with specifics. So for example, there would be an “Antihistamine poll” with (Claritin, Allegra, Benadryl, etc.) listed.
I can set it up, but I wanted to make sure there would be an interest for it first.
Thanks,
Daj
This post was submitted by a reader.
Anonymous says
Hi, sure… I would participate. It is sort of a work in progress for me as I am fairly new at trying to find relief for CU as well. Antihistamines did absolutely nothing for me. I am addressing my diet now and having good results so far. Sauna is due to arrive this week.
Gary
Ryan says
Been following this forum for years and sweat therapy seems to be most peoples main choice but thing like change in diet and candida infection are well up there
shashank says
hey ! will you please elaborate sweat therapy..
Anonymous says
I would be interesting in finding a cure for cholinergicurticaria (hives) after a gallbladder removal.
Ali says
The sauna has been a lifesaver for me. I’ve been suffering from CU for over 2 years now and the sauna is the only thing that worked for me.
Deborah says
How can you use a sauna safely if it overheats your body and you break out with hives as a result?
Hivesguy says
Hello, Deborah.
Sweat therapy (using a sauna or exercise), isn’t for everyone. Many people do benefit from it, however. The idea is that some people are able to endure a bit of itching, but then they can break through and sweat. It can be dangerous, especially for people with severe cases of hives, as well as those prone to developing anaphylactic shock. I strongly recommend getting a doctor’s approval and obtaining an Epi-Pen if you ever want to try it, and beware of the risks that exist.
You can watch a video I made about this topic here: Sweat Therapy Video. This may help to explain the idea behind it.
Deborah says
Thanks hivesguy! I’m new here. Are you the one who overcame this with the fan bike and diet? Ben? I’m so thankful for this site. I actually diagnosed myself a year ago since all the MDs I approached had this dumbfounded look on their faces and were clueless of such a condition when I tried to explain what I though was happening.
Hivesguy says
Hey again,
Yep, it’s me (Ben/Hivesguy). Welcome to the site! I’m glad you enjoy this site, and I certainly hope it helps you find ways to overcome your hives. Hang in there and don’t lose hope. You’re not alone, Deborah. I know exactly what you mean about the cluelessness of the MDs.
Godbless,
Ben
Embarrassed 40 year old says
Id be interested in a poll for solutions. Ive been experimenting with my diet, thats going ok but still getting CU. My doctor is sending me to a dermitologist, while im waiting for that to happen I been researching the plants around our cabin we live in. We found a tree outside our windows which is an noxious plant which causes allergy reactions, we closed all our windows and doors for 3 days and we found a real difference in our scratching and breathing so today the tree is leaving for good. Well keep you all updated with our experiment.
Daniel Ratimorský says
Sauna + workout at least one time in 24 hours
Holly says
Sure, glad to participate.
Matt says
For me the only thing that helps is regular intense exercise until I’m really sweaty . Antihistamines have done nothing . It’s pretty hard to keep up the sweating though since it’s now freezing outside and I’m a lot busier. I’ve noticed that when I’m healthier in terms of diet , exercise , sleep etc my itchiness is not too much of a problem . Try it ! 🙂 having a week off kinda ruins the routine though and the CU comes back 🙁
MikeS says
re: My root cause for Cholinergic Urticaria – talc
Just a follow up note to my March 2012 note to this forum. There are possibly many causes for the Urticaria but for me it was definitely talc. When I begin to get the slightest tingle I look for what I was just consuming and always there was something including talc. Usually it is a vitamin or drug in a white tablet. A couple of times I could only find magnesium silicate on the ingredient list but when that is processed with water it creates talc. So basically after many years of torture by Cholinergic Urticaria I have been symptom-free for several years since eliminating talc from my diet.
By the way, for me also exercise every day to a point of sweating stopped the attacks. But after missing a day or so it was always back to going through that initial pain to get back to sweating and then I would be symptom-free for a day. I assume that is some of process (something about sweat pores being involved?) that was eliminating the symptoms but I also assume that it doesn’t fundamentally influencing the underlying cause.
I also went through many drugs and often had short term relief only to have it begin again seemingly randomly. In retrospect, I was probably adding and removing elements (e.g., antihistamines, vitamins or pain killers) to my diet that contained talc and thereby creating the behavior of something seeming to work and then failing to work. I took a couple of trips to Mexico to obtain Ketotifen, the only drug I could find in the medical literature at that point which was purported to help the Cholinergic Urticaria. It seemed to work great for maybe 6 months and I would have sworn by it but one day it just stopped working for me. I probably just starting taking Bufferin or some other supplement which added talc back into my diet.
So, in summary for me the crazy search for solutions suddenly made sense and it was possible to completely control my attacks, for years now, after I eliminated talc from my diet. Although there may be other causes I’d recommend anyone suffering with this just giving a try at eliminating talc from their diet for a month or so and see if there are good effects or not.
Embarrassed 40y old. says
Just wanting to know what is talc and is it in food?
Elaine says
A few years ago, cardio helped. I started off with 3 minutes (then hives) and over six months I was doing moderate cardio on the elliptical for up to 40 minutes just fine. Then I stopped (money) and now I’m back to 3 minutes.
My antihistamines do a great job. I don’t really get hives unless I’ve been skipping doses or a freak accident occurs. I probably get them once a month now only?
I haven’t seen any help with diet. What’s this sauna idea people are talking about?
Aaron says
I would personally recommend getting a enduracool towel. My body has a problem regulating its temperature, and I find that using a cooling towel helps in that regard. I know it isn’t the most fashionable thing to have around your neck all the time, but you can just bust it out whenever you get an attack and store it away when you don’t (it’s really easy to activate: just need some water and your hands).
Anonymous says
Exercise and diet work for me like all of the other fellow cu sufferers. ..antihistamines worked briefly but they came back. …I first got them when I was 15 years old.when I turned 18 they slowly started disappearing.they were completely gone for 16 years and I mean I was drinking smoking partying etc…so on Aug 13 2014 I throw my daughter a pool party and the next day my whole torso is full of them …very frustrating I thought they were a thing of my past but I guess not .got to keep my spirits high. .
Liz says
The only thing that has worked for me 90% of the time is by getting shots of Xolair every month. It’s veryexpensive so the only way you can really afford it is by having insurance + probably getting an assistance program from Genetec but…
I started taking it May of last year. I get a shot every month, although I am going to an every two month schedule. It has been the only thing that has worked for me. I tried the antihistamines, exercise therapy (this just made it worse for me) and elimination diets before taking Xolair. I’m SO happy I tried – it worked right after the first shot which was amazing. For some people it can take up to three shots before its 100% effective.