First, I would just like to thank you to everyone that has share their story or their tips and for the positivity in this group. I have been reading these post for the last couple weeks and its good to see everyone trying to overcome this problem we have.
So I thought I would share my story. I am a 32 black male from London. I have had cholinergic urticaria since around last year (Sept/October). It started around a time I was going through a really bad depression and around a time I was on antibiotics for tooth pain and got my first filling (I mention this as I have seen people mention that it started around a time they had stress, when on medication, or even getting their first filling).
The first time it started, I was walking up a hill on my way to the dentist. I got hot and got the most painful stinging sensation. I immediately took off my jacket, and after around 5 minutes, it went and I didn’t think anything of it.
It didn’t happen again for around a month when I was running on a treadmill and got the same stinging sensation. Then, a few weeks after that it happened again while I was walking in a new thick jacket I had just brought. Then from there, every time I got hot or anxious I have had attacks.I went to the doctor in December and he told me I had cholinergic urticaria prescribed me cetirizine and sent me away. (I actually came across this site in the waiting room) so when the doctor told me I had cholinergic urticaria I already knew.
This has really got me down, and I have stayed away from exercise which was really helping my depression from fear of the attacks. Reading comments on antihistamines, I generally see they don’t really help anyone, so am reluctant to take any from fear they will make me worst. I have tried the sauna therapy, which is very painful at first but gets better once I start sweating but this only brings temporary relief. I go once a week but will try more.
This site brings me hope as I see how people are battling through, but always brings me down as I see that some people have had this for over 10 years so it gets me down in thinking this is now my life. I am a social guy but now just work and go home. I was sleeping fine but since last week I have been waking up 2 3 times a night with stinging pains. I am really finding it hard to deal and sometimes don’t really think I can.
I have been back to the doctor and have booked in some blood test but he said they don’t do NHS referrals to allergist.
I commend you all on your strength, but this is really hard to deal with.
Thanks,
Niyi
Serena van der Meulen says
My daughter had huge improvements with phototherapy through the NHS- it may be worth trying that!
Kamel says
Hello Niyi! Hope you are doing better today.
I have a similar case my hives started to show up when I was anxious about my exams! I have mild anxiety and sports were helping dealing with the anxiety attacks. I was so upset when I knew that I was not able to do sports like I used to! I now use the sweat therapy technique and it works fine! I take zyrtec it helps by reducing the severity of the reaction by 20%.
The sweat therapy I used:
I was so curious to know if I was still able to sweat, so I tried to exercise then stop whenever the hives would start then restart after 5 minutes! This worked well for me. I was able to sweat after experiencing hives for 10 or 15 minutes! If you want to try it, a family member should be present and an epi pen. Additionally, you should have a thermometer next to you to measure your temperature when you get the hives! If it is above 38.5 Celsius then you should stop immediately. While I was experimenting I made a history of my hives. I took pictures of my body whenever they would come I also did measure my temperature and rated the pain on 10 and the sweat ability on 10.
All the best!
Gary Evans says
Has anyone found help after Botox?
Gerlean hembree says
How about steroids? My grandson has played football since he was 5, he’s now nearly 16 and is considering giving up due to the pain during workouts. He is taking 2 Zyrtecs a day now and it doesn’t seem to help!
Marcia Hildreth McGrath says
My 32 year old son has gotten some relief from exercising to the point of breaking a sweat, and does this 3-4 times per week. He also has gotten completely off sugar and caffeine. This winter has been so much better for him than last winter. He would even wake up all during the night, itching and burning, but now his situation is tolerable. I would encourage anyone struggling with this to go on an elimination diet. My son looks the best he ever has. Clear skin, lots of energy, dropped a few pounds, and is not suffering as badly as a result of the changes he has tried to incorporate. IHe is also vegetarian, and mostly vegan now that he has C.U. The diet changes have really been a big help. Good luck to you all. My heart goes out to you, and I pray for you.
Yash Jagdish Shah says
1 suggestion which might help and did work for me and my mother is having an allergy elimination diet. You need to continue with this strict diet till the time this gives don’t go off totally. My mom had experienced getting hives for the first time around a decade ago. She tried will all the helophatic medication but nothing help and only made her condition worst. She somehow came across treatment called as naturotheraphy which requires you to follow strict diet for curing any disease but the same therapy doesn’t talk about food allergy you have.
She continued with the therapy after getting the food allergy test done and eliminating all the allergenic food items from your diet feeling she has able to lower her frequency of hives to negligible level now.
Later, around four years from now I started having the symptoms exactly alike of that the author of this web site has. I have been searching for cure since a long time for this but the only thing which I could find is having an allergy elimination diet which has helped lot of people relieving from this dangerous situation that keeps on happeneing. That 5-10 mins are worst and can only be understood by person who is or has suffered from this earlier.
I thing I should thank the author and founder of this website for sharing about this to no. Of people making them able to know what they actually suffer from . I personally came to know the name for the disease from him only. He made it helpful for others since he was the first person who couldnt find such forum to get the treatment for this disease.thanks a lot. I have already ordered his book for better understanding of this serious disorder in me and for knowing the right cause and cure for it.
Please share your views and cureness if any.
shuibin says
My English is so bad, so I can only talk about the principles and methods of treatment.
Do you often dry mouth easily ulcers?The skin is very dry?easily angered?why?
In Chinese medicine, this situation, called Yin deficiency.
Yin deficiency.Meaning little water。This is the internal balance of the body, the problem. You drink a lot of water, will find themselves still dry mouth.This long-term imbalance, coupled with the problem of eating, urticaria will attack.
Maybe you are not very clear.
In the food, Chinese medicine above, they are divided into three kinds, hot, cold, neutral.It is not the actual temperature, but the nature of food.Just now, I have said, Yin, that is less water. If you eat hot food, such as fried chicken, it will be hotter. Your body is water, if you often eat this hot food, you will be easy to mouth ulcers. Urticaria is only a long time to lead this practice.
In addition to pork, the rest of the meat is hot.
All foods that are cooked at high temperatures are hot.
All the irritating spices are hot.
If you want to heal, these things can not eat, believe me.
Chinese medicine inside, there is a traditional Chinese medicine called Ophiopogon japonicus. Ophiopogon japonicus This medicine is specially treated dry mouth, can pay water. You buy some, treat it as tea. Drink with boiling water. 20 grams per day.
There is a drug called, PRIMALAN。
And traditional Chinese medicine tea, taken together. Diet, do not eat hot food. Including meat, high-temperature cooking food, irritating food, additives.
Soon you will recover, believe me.
(I hope someone to help me forward, China’s network problems, I have no way to publish on the home page)