My struggle with cholinergic urticaria: (Warning: Long ramble ahead…)
First off, I was surprised and excited to see that this forum is active once more. I have had cholinergic urticaria for just over a year now (1 year 2 months). Unfortunately, I went through hell the first 8 months, as I wasn’t being properly diagnosed. Looking back, I get angry thinking about all the stupid answers I got.
By October of last year, it got critical. Only about a week after I had my most traumatizing attack, did I figure out on my own what I had. Talk about bad timing. I bet if I had known what I had had a medical name and countless people suffered from it, wouldn’t have felt traumatized. Unfortunately docs were telling me, after they exhausted their paltry “tests”, that maybe it was in my head.
I gave up on doctors after that and began my long, desperate quest of finding a cure or explanation of my cholinergic urticaria. Eventually though, around the new year, I found a smart immunologist, recommended to me by a hematologist I saw ( back when I thought my unexplained itching could be cancer related!). It was incredible.
I had seen an immunologist for nearly the entire duration of summer and she wasn’t coming up with anything. Even when I explained to her that moving something heavy, I itched at first but later felt relief for the rest of the day (degranulation of mast cells I would later learn), she and her staff looked at me like I was nuts. She must have gone to Hollywood Upstairs Medical College with Dr. Nick Riviera.
Anyway, in one appointment, this new doctor knew exactly what I was talking about. Everything I explained to my first allergy/immunologist I explained to him. He knew everything I said and even tested me for major environmental allergens…again all in the same session. 1st doc was taking weeks to do that.
He didn’t even recommend any anti-histamines. His best advice to me was to exercise regularly. I’m also getting weekly allergy shots for dust to hopefully prevent full blown asthma from developing.
Anyhoo, I’m rambling. But I just wanted to say I am so glad and excited to see this site up and going. I am not gonna lie: Over the past 6 months, I have gone through some very dark times with this stuff. There were times when I questioned my own future. Alas, this website was archived at the time, but nonetheless all the stuff on here, and HivesGuy’s great advice and experience, really was a lone flickering candle in a seemingly dark, never-ending corridor. Thank you HivesGuy. I am eternally grateful.
In a lot of ways, I have improved. In the weeks following my traumatic attack, I became desperately afraid of foods. I have calmed down a bit in that regard, but out of that I have cut out gluten and wheat. I had a nasty patch of psoriasis reappear on my lower half for nearly a decade.
It decided to stake ground on my leg and stayed in the same place for nearly 2 years. When I drastically altered my diet, primarily cutting out wheat and gluten, but also dairy, it went away. Now I wonder if I actually had psoriasis or if It was that rash that is usually associated with celiac or gluten sensitivity. I mean, I saw the same dermatologist for nearly a decade, as long as I had the rash. In the early years, he would ask me if I came in contact with metal? Huh?? metal?? Looks like a contact allergy. Then one year he decided to say, oh yeah, that’s psoriasis. So who know’s what it was. i think it was an autoimmune rash from the gluten.
I have also been supplementing with high doses of vitamin D after learning I had a severe deficiency, another thing all the doctors I had been seeing had overlooked. I remember asking that same deem doctor if maybe my vitamin D was low (this was before I knew this was cholinergic urticaria) and he said meh, everyone’s D is low, and didn’t bother to check.
Turns out my D was in the single digits. One thing I am really going to try for is acupuncture. I know, I know–the subject wasn’t too popular here, and there are some old posts about it not being effective. However, in my research I have found some people who have done it and said it helped. I figure it’s worth a shot.
There is a great FB page dedicated to cholinergic urticaria with hundreds of members. There was a member who said she has suffered from cholinergic urticaria as well as delayed pressure hives for more than 3 years. She finally tried acupuncture and Chienese herbs…said it cured her. She even gave the name of the doctor (too far for me unfortunately).
To be fair, she went on to say that it took about 6 months of treatment to recover from her 3 years of hives. Most accounts I have seen said they tried no more than 2 or 3 treatment sessions before they gave up. So it seems like it can work or at least help…but it takes time and commitment (and money, alas). As with anything in life, there is no guarantee it will work for everyone but it’s worth a shot.
It’s important to never underestimate the mind body connection…in my case I think a lot of my problem is mental (this cholinergic urticaria came about after a really stressful time in my life), so I figured I should at least try. A few others on the site also said it helped them. Xolair was also discussed on here, if I recall, and there are some active members on that FB undergoing xolair treatment so that’s also interesting to see it used for physical urticarias.
I wish everyone here good luck, and to HivesGuy I say thank you. You’re advice and tips and community on cholinergicurticaria.net have meant more than anything I got from 98 percent of the alleged “professionals” I saw. This is so exciting to see this place active again. Looking forward to it. ; )
-hiveFIVE
Hivesguy says
Hey HiveFIVE,
Thanks for taking the time to share your experience. It was great to read all of that, and I thank you for taking the time to write it all out. I also appreciate your kinds words, and I’m very glad you’ve found this site useful.
I can definitely relate with much of what you wrote. I, too, have had some pretty dark times while suffering with CU. I know how tough it can be. Hang in there, and I’m sure you’ll get your hives under control over time. We’re all in this together.
It’s frustrating that you had such a hard time with all of the doctors, because it reminds me of my own experience (and the fact that many people with cholinergic urticarial will have to go through that). Nevertheless, at least you know what you’re dealing with now.
I would caution you with the acupuncture thing, but it seems like you already know some about what people have said. Just be careful with posts people make online–a lot of people go to elaborate efforts to craft stories of “cures” to try to hoodwink people into buying their sprays, acupuncture, medical treatments, etc.
But if you want to try it, go for it.
Thanks again, and hang in there.
hiveFIVE says
Hello HivesGuy,
Sorry, Didn’t realize I rambled on so much…and that is only a fraction of the story.
Yes, I am very wary and cautious of any supposed get well quick cures and such and with a problem like Urticaria, there are lots of predatory people looking to profit off of people’s suffering. That said, I am always open to alternative treatments that have substance. Even if something like acupuncture cannot totally rid me of hives, it has been shown to be useful for relieving stress in general, as well as depression, anxiety, etc. Even the DoD has admitted there is promise in acupuncture for treating soldiers with PTSD and helping to alleviate symptoms of it. Frankly, I don’t see it any more arbitrary then a doctor telling me all my blood work is perfectly fine (In the past 6 months, I have had all normal blood work (was practically bled dry at a hematologist), CT scans, x-rays, sonograms, urinalysis, EKG, treadmill stress test, MRI, neurological examinations (ECG, EMG), autoimmune screens and urticaria specific blood work, IgE levels etc and so on. Everything normal…almost infuriatingly normal!) So again, I don’t see alternatives any more arbitrary then a doctor telling me “idiopathic” and we don’t know why it happens, take a ton of these chemicals.
When I did first see my new allergist, there was talk of getting Xolair…but my IgE levels came back low and normal so they said the insurance wouldn’t cover it. Beyond that, though, I have no interest in taking any medications for this. Vitamin D3, B12, Quercetin supplement, Vitamin C, Omega 3 fish oil, and some other things…seem to be helping. The only time I take an anti-histamine is on the day I get my allergy shot. One other, perhaps strange sounding thing (though I have seen it mentioned before here) is drink diluted apple cider vinegar every morning and bedtime. Have done it for nearly a month now. It’s hard to tell if it helps but I think it does. Since my worst attack in Oct, I would wake up without fail with a painful deep itch in my feet. That has mostly gone away now.
When it was at it’s worst, the simplest of emotions caused it to trigger. It was scary. Then I went through a phase where it would happen, almost like regular urticaria, but still tiny red pinpoint dots, it would appear just by me waking up or going to bed. God, that was painful. That went on for months. It still primarily effects my wrist areas and my feet. In fact, I almost miss the frantic itch. This just stings like hell. I still think vitamin D and my deficiency plays a big role. If I had to explain it’s origins, I’d say went through really stressful period in my life + poor habits and eating + severe D deficiency and some other vital things + took antibiotics on top of that already weakened immune system = CU, for me anyway.
To circle back, though, to the acupuncture, it’s a gamble yes, but some people have found it worked or at least helped. However, the success stories I read about, the people had treatments for months. It takes time. On here, and elsewhere, those that poo poo’d it only tried one or two treatments. I’ve read so many accounts on so many sites (even in multiple languages!) and it varies from person to person. Of course, ya never know until ya try. There was a fascinating program about a woman who underwent acupuncture a few weeks ago on tv. After months of pointless doctor visits, including a doctor telling her she was depressed and/or some people just don’t fully recover, she found out on her own that she had Celiac disease. However, after eliminating gluten she still suffered the fatigue and had trouble walking (as her doctor claimed “some people just don’t fully recover.”) After months of treatment with an acupuncturist she had found, she was essentially back to her old self, able to walk and exercise. I know for me personally, just as my CU was becoming so severe the last primary doctor I went to was essentially telling me to go to a psychiatrist. I went home and I cried in anger, because I knew I had a genuine physical medical problem.
The mind body connection is a terribly fascinating thing, especially with regards to urticaria. If I can find the link again, I’ll attach it but I found a very interesting medical journal article about urticaria of all types and the relation, in some cases, to the sufferer’s mental state. They had an example of someone developing aquagenic urticaria after a friend drowned, if I remember correctly. There was another case where a woman kept developing drug resistant urticaria outbreaks. The doctors dug deeper into her life and found she was having a problem with her elderly mother refusing to put her hearing aides in. When she insisted she put them in, on doctor’s orders, they went into remission. When she relented to her elderly mother, they returned and again only went away when she insisted she put them in. Now, I am not saying this is the case with everyone. For some it is strictly biological. But it should be considered.
Regrettably, there are a lot of dreams and aspirations I have had to put to bed thanks to this CU and the history of me having it. A career in the Navy is out of the question now. Though, I did come across some cases of people, perhaps anecdotally, getting over there CU when they enlisted (perhaps their CU was more mental related?) Then of course, there are people discharged after they develop while already in (perhaps mental or perhaps biological?) Everyone’s different. Maybe I can still find a boat somewhere, a civilian job. One benefit for me, so far, seems that I am more comfortable in warm weather. In fact, my darkest periods have coincided with the darkest of winter. I actually can’t wait for the summer. Maybe relocating to a warm climate would help. Has for some.
Ugh oh, I am rambling again! Sorry heh, feel like I’ve been in a CU desert, just found an oasis.
hiveFIVE says
Sorry! I realized I never shared that link I mentioned (about psychological origins of some cases of urticaria). Here it is: http://pmj.bmj.com/content/86/1016/365
Very interesting stuff in there. As for me personally, and I am really scared to admit to it (or superstitious that I’ll jinx myself) but I really feel like the acupuncture is working. Not trying to plug anything here or sell anything. Merely relating my experience thus far. The only caveat I can think of however is that perhaps it is most effective for cases that likely originated from stress or whose primary cause was stress. In my case, STRESS was key and still is. Unfortunately I cannot completely extricate myself from my totally stressful environment : ( so it still poses problems, including getting irritable and angry. Although, I will say this, the past couple of times I have been made to get upset…no hives or itchy sting. I actually almost feel damp and sweaty instead. Hopefully I can find some way to eliminate or get away from the stressful environment permanently.
I am totally new to the alternative medicine scene, but let me tell ya, as a lay man trying it out, you really do feel it. You feel them hit something, and in some cases almost feel a jolt run up whatever appendage they’re sticking, like they are hitting something (according to them, it’s a “meridian” if I am not mistaken). Any kind of worry or worrisome thought during treatment is next to impossible to have. Believe me, I have tried and I am just…calm. When it’s over, your body feels so heavy, it takes a while to get out of the bed/table. Nonetheless, I still feel I have a long way to go.
Again, I reiterate that it may be best for people who feel stress truly brought on their condition. Others, perhaps, might find more luck with complete and total diet change, like Hivesguy did. The trick is to find your match.
Hivesguy says
Well, I certainly hope it is helping you, but I do fail to see how it could in any way, even after reading the publication (I updated the link to a short excerpt because the other link was from a site promoting acupuncture). I don’t quite see how it is going to resolve stress. To me, it seems a person with cholinergic urticaria would probably be stressed about having to go, take off most of their clothes, and then get pricked by a needle (something they feel each time an attack happens).
If something else is causing it (i.e., like in the case of my own food issues), I don’t see how acupuncture could help that, either.
Nevertheless, if you can afford the treatments and enjoy it, go for it. I hope it does help you in some way–even if it alleviates tension or stress only. In addition, thanks for taking the time to share your experience and thoughts on it.
I definitely feel that you’ll get your hives over control if you keep a positive attitude and keep trying things.