Hello. I have suffered from Cholinergic Urticaria for 6 months. I would like to start a thread about Background and Success Stories so we can perhaps find a common link or source. I know there are many scattered success stories but I would like to narrow to the most legitimate ones. So far, I see that diet, skin care, and product elimination cured hivesguy.
I have been on the same diet for 2 months with not much luck. I also have been working out regularly only to notice that my “effective sweat area” has decreased from 50% of my body down to about 10% of my body. Sometimes the hives itch, sometimes they have an electric-like feeling and sometimes it is just tingling. For me, the itch is the worst. Anyway, if you have cholinergic urticaria, please respond with some background and maybe we can find a common link.
Here is mine:
Background: I am 43 years old asian male. I participated in sports all my life and played Division 1 Tennis in College. I after college I took up golf, running and weightlifting. With golf I would get constant exposure to the sun…sometimes for 5 hours a day 3 times a week. Running would also get me exposed to the sun. With the running, I was running marathons about 2 times a year and 1-3 hour runs 3 time to 4 times a week.
I never had any issues with sweating…in fact I always noticed I would sweat more than the people around me and at the end of a run, my shirt AND shorts would be soaked through. (These days I can only sweat on my forehead and lower back. My arms, legs, upper back and chest lost the ability to sweat).
About 6 months ago I had a very bad case of the flu. I caught it from my girlfriend who is a dentist. She gets sick all the time from treating patients. I took some antibiotics and about a week later, I recovered naturally. After I recovered I started working out again and started to notice the tingling. It was very minor at the time and would go away within mins of working out once I started to sweat.
My sweating was normal at this point. I did not have viable hives. After about a month of working out I noticed hives all over my arms, chest and legs after working out. they are flesh colored. I always wear a heart rate monitor when I work out and I noticed that my “easy pace” running heart rate increased about 20 beats per minute. For example I used to be able to jog at 10 min/mile warm up pace at 130bpm and now it has jumped up to 150bpm. It is probably my body overheating and making my heart work harder. I don’t think the higher heart rate is fitness related because I know my body and should be able to jog without getting into anaerobic heart rate zones.
I tried the SCD diet (chicken soup, coconut oil and very bland proteins) for about a month and that made me tired. I am now doing the elimination diet starting with chicken, turkey, carrots and some fruit. Nothing has been working so far but it is possible I have not given it enough time. For supplements, I am taking Neuroprotek, Quercitin – C and mangosteen pills. I am also drinking mangosteen juice twice a day.
In summary, it is possible when I got the flu something in my body got thrown out of whack. Or maybe the antibiotics I took wiped out good bacteria and now bad bacteria is taking over. Or maybe it is a degenerate problem and it was just a coincidence that I got sick and took antibiotics at the same time I first noticed the tingling. I don’t know. All I know is if we can all work together maybe we can get closer to the source. So please respond to my post if you have had any success or if you would like to share your background.
To keep a common language, I would classify your “solution” under the following types “Cured”, “Helped (symptoms)”, “Didnt Work – gave enough time”, “Didnt work yet – not enough time for conclusion”. For my diet and supplements, I would classify all those as “Didnt Work yet – not enough time for conclusion” and the exercise/sweat therapy I would classify as “Helped” but can’t call it a cure because my sweat area is actually decreasing.
-HivesRunner
Anonymous says
I will classify mine as “helped” because I have to stay on my diet or it will come back and I still get very minor reactions. However, they are so minor that I barely notice them.
My issues all seem to stem from Gluten. I have gone gluten free in my diet ( as much as humanly possible) and it made all the difference in the world. I do not take any medications or anything else.
Sandy says
SUCCESS
Hello, I would just like to share my story and succes at managing this terrible illlness.
Background: I frist got CU at the age of 20 after going to a homeopathic doctor for my eczema which I have had since I was a baby. The doctor asked me if I had the typical symptoms of cholinergic urticaria (which at the time I had never heard of) and I told him no, he then prescribed me some medicine for my eczema and two weeks later I had my first CU attack ( did the medicine trigger my disease? I believe so) , my attacks were very severe, My entire body would start breaking out after walking for 2 to 3 minutes, it was very intense, it made me very depressed and eventually I had to quit my job because I would get there late, losing my mind from all the itchiness after having walked only 3 blocks to get there. I couldn’t even stand in the sun without my scalp swelling up and feeling like it was on fire. This disease combined with my eczema was a complete disaster and my skin was always very damaged from all the scratching. I got severe attacks everyday for about 7 horrible and unforgettable months of my life and on two ocassions the itching was so severe I ended up passing out in the middle of the street. My depression kept getting worse and worse, I even became suicidal because of this and I felt completely trapped inside my body and humiliated everyday when I inevitably had the attacks in public.
About 7 months later I went to a renown dermatologist in my area and I got there walking and then going up a flight of stairs which resulted in him seeing me having a severe hives attack. He then proceeded on giving me the following medication: mirtazapine at night, cetrizine and desloratadine every 8 hours (3 times a day) and Imuran (mainly for my eczema). Oddly enough after a few days on this medication I was fixed, I was even able to take a trip down to the beach and regain my confidence. after about two months I lowered the cetrizine and desloratadine combination to only twice a day and a few months after that, I stopped taking mirtazapine altogether. I could go about my life “normally” but I was still worried about heavy activity (anything that makes you sweat)…it took me a long time to work up the courage and try to excercise but one day I simply realized (after reading hivesguy’s story about recovery through exercise and diet, and other people’s stories on this forum ecouraging exercise) that the medicine was helping me meet my body halfway and the rest was on me. So I got on a treadmill and ran for 10 minutes. I don’t sweat easily but after many months of avoiding physical activity those 10 minutes got me going, I broke out in hives but the antihistamines made the attack reasonable and bearable. I worked out the next day and the next and the next and the results were pretty much the same, until one day I simply worked out and at the end I was a 100% free of hives! I have been working for 45 minutes to an hour almost every day for the past 4 months and although I’ve had bad days, they have been NOTHING compared to what I used to go through. I can only take ONE day off from my workouts though, if I take longer breaks, I do get mild to minor hives attacks when sweating.
I’m writing this story because I am very sympathetic to the people on this forun suffering from this terrible illness, I myself thought I was doomed and had no way out of this! I know some people are very reluctant to taking medicine and I was too but after so much despair I decided to take the plunge and trust my dermatologist, I have consulted various healthcare professionals and the internet and they have reassured me that antihistamines are not potentially all that harmful to the body, although I do hope that one day I can stop taking them altogether. I just want to say: GUYS find a good doctor trust THEM! Work up the courage and hit the gym! Watch what you eat! You will feel so much better! And please! ONLY TAKE MEDICINE YOUR DOCTOR PRESCRIBES! Stay Safe! Lots of positive energy,
Sandy
DutchHivesGuy says
I’ve been on this forum for a while (and posted earlier) because I’m suffering from CU for about ten years (progressive).
The attacks became very severe, but since I’m using Desloratadine 4 times a day 5 mg it’s going a lot better (even though I’m still having minor attacks).
I’m planning on using a new medicin called Vagantin (made by Riemser AG from Germany).
A recent scientific report (2015), with the title “Successful treatment of cholinergic urticaria with
methantheliniumbromide” describes good results with methantheliniumbromide (Vagantin):
“The patient showed no side-effects after the intake of methantheliniumbromide. It was well tolerated. The patient reported
to benefit as early as 2 h and as long as 5 h after the intake of the tablet. This allowed him to use the medication on demand
prior to physical exercise, which significantly increased his quality of life. The patient has been using methantheliniumbromide
treatment for the last 6 months and continues to benefit from it, without significant unwanted effects. Furthermore, three out of four other CholU patients treated with methantheliniumbromide 50 mg reported similar beneficial treatment responses.”
Source: marcus-maurer.com/fileadmin/documents/publications/original/202_Altrichter_et_al_Cholin_Urt_Methanthelin_DERMAT_2015.pdf
If you get yourself a doctors prescription (off label), and live outside Germany (as I do), it can be ordered by an international pharmacy. Costs are relatively low. I’m very curious whether some of the other forum visitors, especially from Germany, would like to try this medicine (under supervision of a doctor) and report back the results here.
In general the ‘good’ news voor CU-sufferers is, at least, that there is some research going on (especially in Germany, Spain and Japan). The article above suggests that CU has to do with elevated levels of acetylcholine (a signal substance) in the skin, which trigger so called ‘mast cells’ to release inflammatory substances in the skin, like histamine.
Anonymous says
Potentially “helped”
I am a 28 year old male who although not officially diagnosed as having CU do have the symptoms to suggest I have this. Over many years I have gone through on-off long periods of a swelling rash with intense itching on the arms, chest and back which starts by exercising, walking into a different tempature room or changing emotion. Sweating was noticeably almost non-existant during these periods.
Just over a year ago I happened to notice my symptoms suddenly stop around a similar time I changed the product I washed my clothes with. This was then confirmed later on when I changed to another product (CO-OP non-bio gel) and the symptoms started again then a further change to another (bold 2 in 1 gel) stopped the symptoms again. Since then I have been using the same product and have only had a reoccurrence once in the last year when a work colleague sprayed a new perfume so it appears to be an allergy to some chemical ingredient which only causes the reaction when I get hot.
Hopefully this has helped solve the issue for me and I hope you find the solution to your problem too.
Tallguy86 says
Potentially “helped”
I am a 28 year old male who although not officially diagnosed as having CU do have the symptoms to suggest I have this. Over many years I have gone through on-off long periods of a swelling rash with intense itching on the arms, chest and back which starts by exercising, walking into a different tempature room or changing emotion. Sweating was noticeably almost non-existant during these periods.
Just over a year ago I happened to notice my symptoms suddenly stop around a similar time I changed the product I washed my clothes with. This was then confirmed later on when I changed to another product (CO-OP non-bio gel) and the symptoms started again then a further change to another (bold 2 in 1 gel) stopped the symptoms again. Since then I have been using the same product and have only had a reoccurrence once in the last year when a work colleague sprayed a new perfume so it appears to be an allergy to some chemical ingredient which only causes the reaction when I get hot.
Hopefully this has helped solve the issue for me and I hope you find the solution to your problem too.
rebekah says
Condition- nothing worked..
re-posting here also.. sorry for the duplication if you just read this
I am a chronic urticaria with heat which leads to anaphylaxis shock in 80% of my reactions. My issues were triggered by a a traumatic illness at the age of 10, I am now 41… I have had this so long that hives are the least of my concerns I no longer care how funny I look to people I am no longer bothered by the itching or crazy swelling that occurs in my ear, lips welts ect…. What does really bother me is the limitations that are in my life. I live 5 minutes from the beach and I can’t go.I can[‘t work out.. the things I can’t do are too many list but you get the idea… I avoid heat at all cost although this is very difficult since I live in South FL. I am on the daily doses of antihistamines which helped for a brief time. I just tried prednisone and yeah no hives but I went straight into shock with very little indication. I have the same question as above has anyone tried Xolair?
Current meds are (trial of prednisone regimen) 2 fexofendine, 1 ranitidine, triple dose of vitamin D (to help with absorption in) the morning and in the evening,
Past meds in varying does and combinations Hydroxyzine, levocetririze dihydro tabs,
I have tried gluten free, sugar free, dairy free, tomato free,,, I tried it all including (in my earlier years) slow increase in physical activity to build resistance. nothing has worked and the older I get the worse it becomes. I know some of us have it worse than others but for me this is not a mere nuisance this is a life threatening/ altering condition. I average 2 or 3 Epi-pens a month. My swelling can last up to 2 days after the event and I am lethargic and a little foggy for a full 24 hours after. In all of my reads I don’t think I have ever seen where someone else had reactions that lasted that long. If I sound angry it’s because I am and I’m just venting. I never voice this with others, my condition is bad enough without sharing the personal misery.
I do realize that there probably isn’t much advice out there, that I have not tried.. but if nothing else I bet you now feel better about your situation. 😎
Anon says
Condition – no help yet
Hi all, I have been itching for weeks and this morning my partner said I might be allergic to my own sweat after I noticed it was worse when I went for a jog yesterday. I thought it was hayfever as I’ve been sneezing a lot and having hayfever symptons. However, it dawned that after I have a hot shower or bath I feel itchy and my scalp becomes itchy quite often. I am coincidentally trying to cut down on sugar, dairy and gluten but have not seen any difference. I also took a homeopathic pill for hayfever weeks ago, so I wonder if that has had an affect on starting it off as the other poster mentioned. I haven’t been to the doctor yet as I only really thought about the excessive itching yesterday, I’ve just been scratching the itch and thinking it was hayfever as the pollen count has been really high of late (in the UK).
johnny says
Wow that is crazy! Your body’s heart rate increased as soon as you started getting the hives. That’s pretty darn interesting.
I never sweated even in freaking 100 degree weather. And then I started getting hives. I started to work out (aerobic activity) and forced my body to break a sweat. It is manageable now.