So my 14 year old daughter has recently been diagnosed with cholinergic urticaria. Her symptoms began in may 2015, but we blew them off thinking it was stress from cheerleading tryouts. It wasn’t severe or consistent, in fact it was very random…..until around august 2015. Then her hives became more frequent, more widespread, and the unknown hive trigger had begun to show itself.
She was given her diagnosis from her allergist shortly there after. She has no other allergies, asthma, or skin issues. But, here’s the kicker….she has heat AND cold induced cholinergic urticaria?!? So the cold showers don’t work, hot showers don’t work. Summer is miserable, as is winter.
I feel like this is a lose-lose situation. She has an epipen, but hasn’t had to use it yet, but now that its getting warmer (85°today) she is beginning to have chest tightness when she get hot, so I’m sure we will likely need use it in the near future. She’s on 720mg of Allegra a day, it does help some, but the burning and itching is still a big problem.
The allergist only wants to use the immune suppressive treatment as a last resort, and at this point I agree. I’ve read many of your suggestions and can’t wait to try them…but, does anyone else have cholinergic and cold urticaria? Suggestions??
This truly scares me to death as a mom, not knowing what to do for her or how to make it better.
-Jennifer
Anonymous says
One thing I did during my time at college was buy a cold bottle of water whenever possible and sip it during hard times and when I exercised I would make sure I went all or nothing to make myself sweat quickly so the pain would go away. Sweat therapy worked for me also! Sweating daily after a while helped my urticaria 🙂 I pray your daughter gets through this she isn’t alone and will always have help on here xx
Anonymous says
I carry a cold water bottle with me all the time. It helps when you feel hot or stressed. & just as the other guy said, sweating regularly helps tremendously. It helped weaken my attacks to the point where it didn’t really bother me anymore
Jennifer says
She has been walking everyday on the treadmill, and although she breaks out, it is still tolerable. However, we had some early hot days, roughly 85°(in summer it’s usually many days of 95-100°+), and while outdoors, it was unbearable pain for her after maybe 15 steps, never even made it off the sidewalk to the yard. I’ll have her try the water bottle. Thank you for the suggestions 😉 IS there anything I can use on her hives that help with the burn, sting, and itching? Essential oils? Natural? Lotions? Must be Steroid free due to the large coverage area, I’ve tried aloe, and dermaplast..neither were very helpful.
Regina says
we use cetaphil lotion or coconut oil, but doesn’t really help that much for the itching. Mainly avoiding breakouts is the way to avoid the itch. Cold/wet items might make it worse since she has cold urticaria also. It seems like it would help, but doesn’t necessarily work that way.
Regina says
My 14 (almost 15) year old daughter has had cu and cold urticaria since her 12th birthday. (I have a feeling it is somehow related to hormones, but don’t yet know the connection.) The doctors and allergist just said she has allergies and put her on massive doses of Allegra, Zyrtec, Zantac, hydroxyzine and wanted her to take montelukast. After months of searching, I discovered that she had cu and cold urticaria. The allergist agreed with me, but said it didn’t matter because there is no cure. We tried the allergy shots, but they made it worse. The hydroxyzine seems to help some, but she rarely takes anything else now because it didn’t seem to make a difference.She continued with sports for a few months, but it makes her so miserable that she no longer attempts much exercise. She also developed asthma 3-4 months after her urticaria began, which apparently can be a side effect from the antihistamines. She eats a very limited diet (none of the major allergens), never eats hot or very cold drinks (throat swells/ears itch), and tries to control her temperature. Sitting in sun, cold air blowing on her, cold or hot water, spicy foods, stress, etc, all cause her to break out. (And after a break out, she often has stomach aches and headaches for the next couple of days.) She has learned how to adjust her life, but it is hard. She focuses on drawing and reading now in lieu of sports, and I can see how God has used it to strengthen her character and faith. One thing we have tried recently with some success is the nettle leaf. It doesn’t eliminate the hives, but seems to help some. We also use essential oils in a diffuser every night in her room (careful with topical application as it can sometimes cause a reaction). Let me know if anything helps your daughter! I will be praying she feels better and praying for you too! I know how difficult it is to watch your daughter suffer and not be able to help.