r/CholinergicUrticaria

Disclaimer: I am not a doctor. This post is purely for informational purposes based on my personal experience, theories, and research. Please consult a dermatologist or allergist before starting any new treatment routine.

TL;DR: Suffered from CU for a decade. Noticed it vanished when I moved states, but roared back when I returned. Researched the link between sweat, skin microflora, and a specific yeast (Malassezia globosa). Started using OTC Nizoral shampoo as a body wash a week ago, and my hives are almost entirely gone.

My Full Story:

As someone who has suffered from Cholinergic Urticaria (CU) for roughly a decade, I have tried countless supplements and diets. Absolutely nothing seemed to help, with the sole exception of Cimetidine (brand name Tagamet).

When my CU first started, I was living in my original state. After about six years, I moved one state over. Even though it was an adjacent state with a similar climate, it had a different soil profile, distinct regional flora, and slightly different allergens. Almost immediately after moving, my CU basically vanished. I initially assumed the improvement was related to lower pollution.

Eventually, I had to move back to my original state. I chose a rural area this time, hoping the lower pollution would keep the hives away. Unfortunately, it came back stronger than ever.

This sent me down a massive rabbit hole. I knew my CU had to be at least partially driven by environmental factors. During my research, I stumbled upon recent medical studies regarding the Malassezia globosa fungal protein and its link to CU. This yeast lives naturally on everyone's skin, but research shows some CU patients have an allergic immune response to a specific protein it secretes when dissolved in sweat. My working theory is that the different soil and flora in the other state supported a different microbiome that naturally kept this specific trigger strain at bay.

To test this theory, I decided to try an over-the-counter antifungal wash: Nizoral Anti-Dandruff Shampoo (with 1% Ketoconazole).

Believe it or not, it is actually helping. I have been using it as a body wash for a little over a week now. While it might sound too good to be true, I have noticed a massive improvement in my outbreaks. It isn't 100% gone yet, but it is incredibly close. If you are struggling with CU and feel like environmental factors play a role, looking into the fungal-sweat connection might be worth a shot.

I have an event coming up soon where I’ll be exposed to the sun for about 2 hours. Is there anything I can do to at least be sure that I won’t visibly break out in a rash during those 2 hours?

It’s just this one event — does anyone have any advice or help?

I need a little help on curing/alleviating my CU.

I’ve been scrolling through this sub-Reddit and I’ve seen a lot of people saying they have a lot of different solutions for their CU but I need someone to help me narrow down what steps I should take. There’s so many different things to try I have no clue where to start. Antihistamine, sweat therapy, warm showers, dead skin, it’s just so much stuff. I would appreciate if someone can sort of give me a simplified guide on where to start.

Heads up: I can’t sweat and my CU is caused by any LITTLE thing that even kind of makes me bothered/annoyed and ofc is triggered by heat.

About a month ago, I had stomach upset. Family doctor suggested to have Pan IT morning and it should go away.

Started having probiotics like you, Idly every day basis and avoided, mostly fast and unhealthy food.

One month later, started having welts, on arms and elbows which kept moving from one spot to other, but mostly restricted to forearms. Showed Dermat, gave Antihistamines thrice a day. Even after 7 days, no improvement, infact it started spreading to arms, legs, torso & face. Anything touches my skin, & it flares up may it hair, clothes seems, desk etc.

Now My family doc has put me on steroids 8mg. Worked for a day or two, but the forearm flare ups are still active.

Any tips/ recommendations/ medication are welcome.
Also what’s the timeline? Root cause? Is it SIBO? Gallbladder? What’s wrong?

Any help is welcome.
Thanks

I haven’t seen anyone ever mention this but my earliest record of having this was maybe about 5 years ago when I was 12. It happened first when I was training but this would only happen to me maybe once every 6 months like very rarely. In recent months it has become a daily occurrence, so I’m just wondering has anyone else ever been like this where they first experience it was before it gets to the point where it’s pretty severe.

I’ve had a strange condition for years and I’m trying to find people with similar symptoms.

Whenever my body gets hot — from exercise, warm weather, stress, embarrassment, excitement, or even talking to a girl I like — I get an intense stinging/prickling sensation all over my body, like needles or electric shocks under the skin. Sometimes it even happened in my dreams while sleeping.

The feeling becomes extremely uncomfortable and the only thing that helps immediately is cooling my skin with cold water or staying somewhere cool.

I usually do NOT get obvious hives or visible rashes, mostly just the painful stinging sensation.

About a month ago I received injections of Diphenhydramine (Dimedrol) and Triamcinolone, and since then the symptoms have mostly disappeared. The same treatment helped me before for about 2 months.

I’ve already visited many major hospitals and had many tests done, but no clear diagnosis yet.

Does anyone here experience something similar? Especially the stinging triggered by heat, emotions, anxiety, or social situations without obvious hives?

My CholU spontaneously quit happening when I was a teenager, thank the heavens for that relief.. Now, 17 years later, it has come back again. I believe this is due to severe dry skin, so I should quit having breakouts once I clear my skin up again (I used to have an excellent skin care routine as an adult).

I am a general contractor, and have been unable to work the past couple weeks since the CholU has come back. I can't perform the hard, manual labor necessary to do the job without breaking out... It's getting to the point where I'm having anxiety attacks about working and breaking out, which just makes the breakout that much worse. I almost feel like I can't work construction any more and have to switch career paths because of the CholU (or file for temporary disability; I also have other disabling factors if I go that route).

Does anyone else get severe nerve pain from CholU? If it were just itching, I'd be fine, but no it feels like I'm on fire. I would be open to any solutions... I have to take every-increasing doses of benadryl, which keeps symptoms at bay sometimes, but tolerance comes quick.

This is mostly just me venting. Thanks for listening.
PS. If someone says it's just hives, that they get hives and are fine, I'm going to go nuts. It's not normal itchiness

I’m 17yo and the more I read about cu and other people who have it almost everyone is unable to sweat or at least finds it very difficult to. I sweat literally all the time and especially when I’m having breakouts due to my cu it often comes with a lot of sweat mainly in my armpits. Is anybody else here like this? Or does anyone know why I have cu while still sweating so excessively to the point I think I might have hyperhidrosis? Could it maybe even be something that isn’t cu but still hive related?

Hey everyone,

Has anyone taken dupixent for over 6 months? Any notable changes?

Hello, I’ve been doing a 40-minute workout (sweat therapy) for 26 days now. On the first day the rash was excessive and unbearable, but in the last few days, thank God, there has been very little of it visually.

As I understood it, the idea is that histamine gets “depleted” and there’s basically none left for about the next 24 hours.

However, sometimes during the day I go out in the sun and walk, and a small rash appears visually — how is that possible? Am I on the right track?

Hey everyone,

I’ve been dealing with what seems like cholinergic urticaria for the last couple years and wanted to see if anyone has had a similar experience or found anything that actually helps.

For some background, I grew up on the East Coast, went to college in Texas, then moved back to the East Coast for my master’s. I’ve always had seasonal allergies, but never hives or anything like that growing up.

Toward the end of grad school, I noticed that if I pushed myself insanely hard during soccer, I’d sometimes get these tiny red dots on my legs. They weren’t itchy and would disappear pretty quickly. It only happened a handful of times, and weirdly it never happened during lifting, climbing, or other workouts.

Then I moved to Washington State and within weeks things got way worse. I started getting really itchy hives on my forearms whenever I worked out or lifted. Over the last two years it’s progressively spread, and now I can break out basically head to toe anytime my body heats up. Exercise is the biggest trigger, especially hiking or tennis, but even stress/anxiety or sometimes just taking my dog on a short walk can set it off.

At its worst my whole body gets red, itchy, and puffy.

I’ve tried a few elimination diets with no success. I’ve had a bunch of blood tests done over the last two years and everything always comes back normal. Allergy testing showed I’m allergic to pretty much every tree and grass in the PNW but nothing specifically tied to this.

Xyzal has helped the most out of everything I’ve tried. Taking it daily used to reduce the itching a lot, although the hives would still appear. Lately though, even that seems less effective and the itchiness is coming through more and more.

The weird thing is it doesn’t seem connected to weather or seasons at all. Hot or cold, summer or winter, doesn’t matter. If my body temperature rises, I react. I’m also confused by the people that say to sweat or to exercise more. The more I exercise the worse I break out :(

At this point I’m mostly just frustrated and curious if anybody has found a fix. Ideally would be natural, non-medicine fix, but I know that’s easier than done.

I have CU and mine only happens when my inner temperature rises! It mostly happens at night while sleeping or during the day when I get more active or physical. Sometimes I see what others are going through and it encourages me not to think about it too often because others' situations are worse than mine. I could go a whole week or more without any itching if I stay stress-free or if I find myself in a cooler environment. I will be the happiest soul ever if one day there is a cure so we can finally be happy in life.

Guys please check your zinc levels if you suffer from cu cause I’ve been struggling for months with extremely bad cu to the point I’d start breaking out just from talking to people, but I randomly decided to start taking zinc without a proper reason (Ik it was stupid but that’s not my point) my cu improved almost immediately and I started sweating again for the first time in months. This is not saying that zinc is a solution but cu is like 30 times worse if your deficient in zinc for some apparent reason, well for me atleast and I just wanted to share my experience as it may help someone else. Also my cu is not gone it’s just not as bad as it used to be . Also dry skin is a factor pls be aware of it