Facial Edema (Swelling) With Cholinergic Urticaria Hives

If i stay out in the sun (like at the beach) to the point of getting a slight sunburn, my forehead swells. the following day, the fluid seems to drain towards the eyes and nose region. this creates what my loving children describe as “mama’s lizard face” the fluid literally puffs up my eyes and cheek area as to give the appearance that i have no bridge to my nose. honestly, it is quite comical. during these couple of days, until the fluid disappears, it certainly gives botox a run for it’s money.

my skin is so tight from the build up of fluid, that i could not make a frown line or wrinkle up my nose if I wanted to. what an extreme way to banish wrinkles. lol

I was curious to find out if anyone has had a similar experience?? bbroom

Hello bbroom,
No, I never get any type of swelling reaction like you described. I’ve had a couple of mild sunburns since I’ve had cholinergic urticaria, but I have never had any severe swelling or unusual blistering. Only mild redness of a regular burn, followed by the “peeling” most people get.
It sounds like that is pretty severe reaction to the burn. Has anyone else on this forum ever had this type of reaction??

I too have never had this type of reaction. I love sitting out in the sun, it seems to make mine better. Its getting colder now and I got hives on my face at college yesterday.. was not ideal.
Sounds like you have more angiodema than Cholinergic Urticaria?

JUST TO CLARIFY, NO BLISTERING AT ALL FROM THE SUN EXPOSURE, JUST SWELLING LIKE YOU WOULD SEE IN YOUR ANKLE IF IT WAS SPRAINED.
SOME TIMES I FEEL THAT MANY OF THE WEIRD MALADIES THAT POP UP , WE AS Cholinergic Urticaria SUFFERERS, AUTOMATICALLY ATTRIBUTE THEM TO ANOTHER SYMPTOM OF THE CONDITION. AS ALWAYS WE ARE LOOKING FOR A CAUSE AND EFFECT AND HOPEFULLY THE SOLUTION. MY PALMS AND SOLES OF MY FEET GET EXTREMELY SENSITIVE IF THEY ARE EXPOSED TO COLD. YES I HAVE MEDICALLY RULED OUT CIRCULATORY PROBLEMS AND CONTACT DERMATITIS. NO ONE HAS RULED OUT THE POSSIBILITY OF MY HAVING A SLIGHT ALLERGY TO COLD AS WELL AS HEAT. LUCKY ME!!

I would be temped to label this as a different form of Hives rather than Cholinergic. As it’s really only labelled by the symptoms that doesn’t make any difference to the solution to the problem, which is no doubt related.
I sometimes get covered in small dots, looks like measles, but they pass quite quickly. I currently have blotches on my inner elbow, which looks like I’ve been taking heroin (I haven’t). I can squeeze them and opaque white gel comes out, similar to a normal spot, but whiter and thicker. Maybe it’s histamine, -shrugs-.

Hi bb, Cholinergic Urticaria can uccur anywhere that your body heats up and not necessarily with expossure to the sun. It always starts with a smarting/burning sensation followed by redness and wheals (tiny bumps like new mosquito bites. I do get facial swelling when I heat up my body excessively, it starts with the classic Cholinergic Urticaria hives which tends to coagulate into a huge swelling on my face and I end up looking twenty years older for a couple of hours! After this it subsides completely. I also get Cholinergic Urticaria hives all over my body along with my face.
On a sidenote I think the caps-lock key on your keyboard is stuck (its on the left side; the one with the light) could you tap it a bit again! Maybe this time it goes off 🙂

LOL I was wondering why only caps were appearing. My husband admitted to spilling coffee on the keyboard. I had to remove a few keys and clean, but I think the problem’s solved. If only the answer to Cholinergic Urticaria was as simple.. 🙂

;D if only the solution to Cholinergic Urticaria was as simple.
Btw bb have you tried any other form of therapy like homeopathy, accupunture etc.? would love to know!

I have tried cutting foods from my diet. Peanuts, gluten, artificial sweeteners, shellfish, sodas,dyes, etc. I have tried 1000 mg per day doses of vitamin C. Almost all antihistamines known to man! I have not tried acupuncture nor strict homeopathic therapy. Although, I am seriously considering hypnosis. The mind can be a powerful influence on your health and well being, and since I have tried so many different medication combination and vitamin and mineral supplements, maybe hypnosis should be my next option. I wonder if my health insurance will cover it?? LOL
As i have said, the use of Singulair with an antihistamine has provided the best response so far. But I am always looking for something that will halt this condition completely.

Yeah, I agree that it is best to try to find something that 100% eliminates this. That is what I want more than anything. I dream of being able to just run outside, or work out, or whatever and just sweat and never again feel the pain and discomfort of cholinergic urticaria.
By the way, you said you tried a gluten free diet, how long were you gluten free? I too am trying cutting out milk and gluten for a few months. I have already done it a couple of times, but only for a month once and a few weeks another time. But I did recently read about a different skin condition caused by gluten (dermatitis herpeteformis), and it will go away only after 6 months to a year of going completely and totally gluten free. So I am trying it for at least 3-6 months, and I will see if it has any impact at all on the hives.

I tried the gluten free diet for about 9 or 10 months. It was difficult in the first 6 weeks to 2 months. I had to be diligent about reading labels and discovering which foods to avoid. I can’t really say that it had any positive results ,but then also, I was on my my meds at the time. I was reluctant to stop them because I had such good results being on them. I guess I was hoping for a cumulative effect. If the meds suppressed the symptoms, then maybe the diet change would initiate a curative result. But upon missing just one dosage of meds the Cholinergic Urticaria was in it’s full glory. But don’t give up. As you must realize, what works for some may not work for others. I think thats why this type of forum is so helpful. The more informed we are, the more options we have to get this condition under control. Trial and error should be our motto.

Thanks for your reply about the diet. I will continue to do it just to make sure so I can totally rule it out. As you said, it could be something different with each of us. But since you did it for such a long time and didn’t see any type of positive results, that makes me a little less optimistic of gluten or milk being 100% related to the hives. But I will keep on doing the diet for a few months at least to make sure.
I just hate this feeling/sensation so bad, I just wish it could be permanently cured or stoped without doing anything harmful to our bodies in the process. I literally hate cholinergic urticaria!
Also, I like the trial and error motto! Hopefully one day we can find a cause. If we find a cause, it increases our chance of finding a cure.

What exactly does that mean? I have been taking homeopathy exclusively for that last 8 months it helped tremendously in the beginning, but alas, it came back! I have also tried ayurvedic remedies/acupuncture/bach flower remedies but it always makes a grand comeback!! Oh forgot to mention antihistamines/steroids as well, I will make a detailed post soon about my trials and tribulations. Hivesguy thanks for making this site! Sorry for my late comeback into this thread :-[

I did not seek the help or advise of a holistic health practitioner. I simply read what I could find about the benefits of vitamin, mineral and herbal supplements. If something pointed towards helping with allergies, skin problems or stress I would add it in to my diet. This was my course of action early on because their were no meds available (except antihistamines) and alone they offered no relief. I thought that if I avoided all artificial ingredients and added mega doses of vitamin and mineral supplements, that I could make my self healthy enough to “cure” this malady. One caution.. Mega doses of vitamin C ( 1500 mg/day) resulted in horrible heartburn. I added a multi vitamin to my diet and took additional mineral supplements. Bromelain, valerin, B 6, B12, Calcium. I did not increase ,beyond the recommended dosage,my intake of A,D, E or K. I was not sure if these fat soluble vitamins would be harmful in large quantities. I discovered that artificial sweeteners were causing my migraines, and following a strict diet free of anything processed or artificial helped my hypoglycemia and I did lose some weight ( with out the benefit of exercise) but the Cholinergic Urticaria was no different.

hypoglycaemia? Bb this rings a bell though I have not been diagnosed, I do feel hypoglycaemic, just wanted to check with everybody else if they have this condition too.
Thanks for your detailed and prompt replies bb, much appreciated!

A glucose tolerance test will show if you have low blood sugar. I was diagnosed with hypoglycemia at 17. I passed out at a department store while shopping with my mother. She immediately sought medical help and the doctor had me do a glucose test. I do not remember the numbers, but I do remember passing out again halfway through the test. My glucose had bottomed out. I basically was told to follow diabetic diet guidelines. Eat 6 small meals a day and keep sugars and carbs to minmum. I do know that this indicates a pancreatic issue. I was told that it could indicate type 2 diabetes in the future. Of course at 17 the future seemed light years away. LOL I never thought about a connection btwn Cholinergic Urticaria and hypoglycemia, but then again who knows. Good food for thought. Maybe there is and endocrine issue underlying this.