My 3+ Year Experience with Cholinergic Urticaria

Hi Ben,

So grateful you created this community to learn from one another and comfort each other in our respective journeys. God bless, you.

I’m a 26 year old male and I’ve been working to overcome pretty severe cholinergic urticaria, anhidrosis, neuropathy and a condition called muscle rippling disease for the past 3+ years. The cholinergic urticaria first started when I was exercising at the gym back in 2012. My head started burning and I had no idea what was going on, but at that point I pushed through the pain. That started happening consistently for a month, but I was always able to push past the pain, but it got to the point where it became too painful to exercise, so I stopped.

In the span of a couple of months, it progressed to the point where I could no longer walk out in the sun or do basic activities like vacuuming or cook with the oven on. I wouldn’t always break out into hives, but the pain would always be there. It got to the point in 2013 when I stopped working for 8 months- as soon as I opened the door to leave my apartment, I would feel these sharp electrical burning pains- like someone was using a taser. I would only leave my apartment in the morning while it was still dark (no sunlight) or an hour or two after sunset.

The combination of neuropathy and cholinergic urticaria got so bad I would get reactions (emotional triggers) just from talking on the phone, checking email or watching TV. During this period, I cut myself off from family and friends and stayed in my apartment day and night- I also started having suicidal thoughts during this period.

Toward the end of the 8 month period, I saw my internist and he recommended I try cymbalta for the depression and after about 3 weeks I noticed the neurological symptoms start to lessen to the point where I could at least walk in the morning and night without severe reactions. However, I started regressing.

Through out 2013 and 2014, I tried different combinations of drugs and natural herbs like Xolain (Allergy), Dandelion root, different Japanese mushrooms, 2 years of monthly IVIG blood infusions, Allegra, Zantac, Prednisone, Cell Cept, Hydroxzine, and many other H1 and H2 antihistamines. I also had more tests than I could ever name including HPyloric, Ultra sound of my thyroid, and H.Pylori test.

Fast-forward to March 2015, I see a dermatologist in San Diego who prescribes a high combination of Zyrtec (40mg/day), Zantac (900mg/day) and Atarax (2mg/day). Things gradually got better to the point where I could walk out in the sun and exercise!

But in late August, the symptoms came back so quickly, like a slap in the face. I’m now taking 1500mg of Zantac, 60mg of Zyrtec, and 4mg of Atarax every single day in addition to 25mg Amytripataline, 60mg of Cymbalta, and an immunosuppressant called Prograf. I’ve seen a psychologist, neurologists, internist, gastro-internologist, hematologist, dermatologists, and allergists. However, my symptoms have remained unchained and I have reactions from casual conversations, little amounts of sunlight and even just walking.

After finding this site 3 weeks and another site called The Low Histamine Chef, I decided to go on a histamine elimination diet, also eliminating gluten, dairy. So for the past 3 weeks I’ve been eating blueberries, apples, turkey, chicken, lamb, brown rice, quinoa, sweet potatoes, zucchini, onions, garlic, ginger, coconut oil, and olive oil. Sometimes arugula and sometimes broccoli.

I haven’t seen any changes just yet, but I’m still hoping and praying. I carry ice-packs everywhere I go and am always drinking cool water.

I’ll be flying to Minnesota next month to see doctors at the Mayo Clinic for this condition and muscle rippling disease.

Hoping and praying for everyone else who is working to overcome this and(or) other conditions. It’s really hard when you look normal, but on the inside, you’re working so hard just to keep from having reactions.

Does anyone else experience seasonal cholinergic urticaria? Seasons when your symptoms just worsen?

-Nate