Hi, I’m a 20 years old and I’ve had Cholinergic Urticaria for about 6 months now. I remember it starting this October, I would be in class and I would suddenly feel really itchy when someone would talk to me (I have social anxiety). During a group project I had to leave the room because the itching became unbearable and I noticed little red dots on the back of my hands and my arms, and I was pretty freaked out. I was really worried about what it might be until I looked online and discovered Cholinergic Urticaria.
A dermatologist diagnosed me with Chronic Hives. I guess they never heard of Cholinergic Urticaria, because my symptoms match perfectly (Pinpoint hives, breakouts when hot, nervous, etc.) . They did a blood test and everything came out negative. My current medications are Vistaril, Zyrtec, Allegra, and Propranolol. Propranolol is the most helpful because my hives mostly come from situations where I’m nervous. I wish I had started taking it before I had the hives. The antihistamines all sort of help, but not much. I still get hives multiple times a day.
It’s just so awful, I don’t know how I can cope. I remember some of my happiest moments at music festivals in the hot summer sun, dancing in a big crowd, or just laying in the sun on the beach with my friends. These would be impossible for me now and it makes me really depressed. The feeling is just so terrible, how my whole body feels hot, I’m itchy to a point where it’s painful, and if I’m in public I need to keep calm and look composed even though I feel like I’m dying on the inside. I read that the average duration for this is for 7 years, and I have no idea how or if I can cope for that long.
It all feels like a nightmare that I’m hoping I’ll wake up from, but I know it’s not the case. It’s so surreal, the feeling of having so little control over my own body. In a way, I would rather have a more dangerous illness, that way at least I could spend my time in the hospital, and not need to go through life with this. What motivates me is hoping that one day I’ll wake up, go to a store, and not feel itchy when the store is heavily heated, and then not feel any itching when I buy my things from the person at the counter. I used to take these little comforts for granted.
I haven’t experienced a summer with Cholinergic Urticaria yet so maybe that will make it better since I’ve seen some articles that it goes away in the summer for some people, or maybe it will just make it worse. So far where I am the temperature has stayed pretty low so I’m looking forward to and pretty scared of the next couple of months. I’m going to see an Allergist in the next few days and ask about a Xolair shot, since I’ve seen that it can be really helpful to some, but I just hope my parents insurance covers it. I’m also going to try to try Doxepin.
I guess my questions are: How has Cholinergic Urticaria affected you in the summer? Does it get worse, better, or stay the same? Also, for those who have had it for a long time, what strategies do you use to cope? Also, to people who have tried Xolair or Doxepin, how has it worked for you?
And I also really want to thank the creator of this website. It’s comforting to know I’m not alone in dealing with this. I sincerely hope that one day they will discover a cure for Cholinergic Urticaria and we can all be free of this.
Thanks for reading!