I was referred to Dermatology many years ago following a referral from my GP after months of trying anti-histamines and various other treatments to control my heat hives. After researching online, I self-diagnosed myself with cholinergic urticaria, as the symptoms I experienced were exactly the same as others online. This website helped with my self diagnosis (Thank you Ben).
After my consultation in dermatology, I was discharged, as I was managing with sweat therapy, which included exercising on a daily basis to open up my sweat pores, which seemed to lessen the intensity of the attacks when becoming warm/hot during the day (even though it is excruciating when exercising–please check with doctor before pursuing this). I was offered UV light therapy but wasn’t keen due to the potential side effects.
This condition is very debilitating and has affected my quality of life for almost 12 years. The heat hive attacks, pain, and burning sensation that I experienced on a daily basis is unbearable, especially in winter when I do not sweat regularly.
I have recently found something which has helped my attacks considerably, and I hope this can help other patients suffering from this terrible condition. I’m not great with dermatology but It feels like my skin is dehydrated and dry which seems to clog up my sweat pores, therefore when there is a rise in temperature, my sweat pores cannot secrete sweat and I experience a hive attack.
After researching online, one of the things which was suggested was using coconut oil, and I have been using this on my skin on a daily basis to keep it damp and hydrated. And although it’s only been one week, I haven’t experienced the intense attacks and can sweat normally. This has changed my life considerably. I still use sweat therapy too.
I’m unsure if this is currently used as treatment, but I hope this helps others. The best thing is that it is natural product and so unlikely to have any side effects. I have passed this information on to the Consultant Dermatologist, so hopefully word may get around. I’ve expressed my interest in volunteering in any research as there seems to be very little literature and studies.
Please let me know if anyone requires other information!
Thanks
HRC
David says
Hi HRC,
I’ve been dealing with cholinergic urticaria off and on for the past 20 years. I actually had a hiatus for 12 years without any symptoms at all. But unfortunately it came back out of nowhere in 2016. Back in 2003-04 I was part of a yahoo support group for CU. We used to share ideas/solutions and that’s when I found out about sweat therapy.
It seems to be the only thing that helps with this crazy condition. I was on many h1 and h2 antihistamines and none of them worked. Do you find that summers are better for you? I don’t have symptoms during the summer because I sweat normally. Winter time is horrible because I have a difficult time sweating and trying to exercise to break a sweat is excruciating.
Back in the early 2000’s, I used a steam shower or sauna at the gym which allowed me to break a sweat fairly quickly without the horrible itch.
David
HRC says
Hi David
Thank you for your reply, yes summers are much better especially when it is humid but unfortunately in England the winters are long and this is usually a very difficult time of year for me. I now exercise and use the treadmill twice a day at home to keep it under control but even then I can breakout in the day, also with work and going away it isn’t always practical to exercise twice a day and quite tricky to fit in daily life. I suffer a lot during the winter and count down the days until summer, perhaps it’s an excuse to go on holiday every winter?! I’m hoping to join the gym in the next few weeks so I can access the steam room! Do you still use the steam/sauna room? Does it help?
Thanks
HRC
Anonymous says
Hi HRC
I think we’re fortunate (as crazy as that may sound) that we have the type of CU that tends to get better in summer months. I’ve met people online that get symptoms all year round. As bad as winters are for me, I’m glad I can have some months without having to avoid situations of an outbreak. I also try and do cardio at home to break a sweat but those first 15 to 20 minutes are painful. The amount of sweat is minimal at best. I am not currently using a sauna because I am no longer a member of the gym I was going to when I had this back in 2004. I plan on joining one soon. In the meantime, you can try standing in a hot shower with water facing away from you. The steam from it should work like a steam sauna. I learned this trick from another fellow- sufferer. This worked for me it opened my pores and I began to sweat without the pain I would get with just doing cardio alone.
David
HRC says
Hi David
Great tips! I will definitely try the steam thing in the shower. Totally agree with about having some relief during the summer although I must admit the summers in the UK are not great and last for a very short period of time, temperatures can be as low as 16C and so I have to continue cardio. This winter it feels like my hives are worse because it is one of the coldest winters and I have to exercise twice a day (morning & evening) to keep it under control and the histamines build up quickly. In the summer usually one quick run in the morning lasts me the whole day. Are you located in the states? Summers will be better there. Very sadly I find it difficult to get close to my girlfriend as I usually experience an attack or itchiness during winter :/
Thanks
HRC
Linda Starr says
David: “better in the summer months” ??? I thought it was called “heat” hives because they got worse in the summer…like mine does here in the Phoenix area! I just found out that, going through infusion center instead going to my doctor’s office for the injections, will now be paid by Medicare PLUS my supplemental insurance…but I told them I probably only need Xolair from May through December and, unless call them back, that’s how I’ll do it. (For awhile, the copay was over $500 and I just couldn’t do it.)
David says
Hi Linda.
Yes, I have the type of cholinergic urticaria that gets better during the summer. I am able to sweat from the heat and humidity without having an outbreak. During the winter I have a difficult time sweating. Anything can set off my symptoms during this time. A warm room, excitement, basically a rise in body temperature. Since I can’t sweat my body can’t cool down to help bring relief that I would normally get when I’m sweating.
David says
Hi HRC
I think we’re fortunate (as crazy as that may sound) that we have the type of CU that tends to get better in summer months. I’ve met people online that get symptoms all year round. As bad as winters are for me, I’m glad I can have some months without having to avoid situations of an outbreak. I also try and do cardio at home to break a sweat but those first 15 to 20 minutes are painful. The amount of sweat is minimal at best. I am not currently using a sauna because I am no longer a member of the gym I was going to when I had this back in 2004. I plan on joining one soon. In the meantime, you can try standing in a hot shower with water facing away from you. The steam from it should work like a steam sauna. I learned this trick from another fellow- sufferer. This worked for me it opened my pores and I began to sweat without the pain I would get with just doing cardio alone.
David
Linda Starr says
I’ve only had hives as an ongoing problem for about a year-and-a-half (I only remember one outbreak many years ago from stress). We left California for Arizona in 2014 (the hot Phoenix area where it can reach 120 degrees on the worst days) and I started to notice this problem at the beginning of 2016. But when the summer came it got really bad and I couldn’t sleep at night. Went through getting all the prescription meds (3 kinds of anti-histamines and a big tub of cream to apply topically). It seemed to eventually go away and I was glad I’d turned down the offer to try Xolair, but when summer came again this year it got really horrible again and I finally tried the XOLAIR monthly injections for four months and it worked like a charm!!
The only thing is, I can’t afford the co-pay (over $500.00) which is (for the two vials they give) 25 percent of the cost. I am dreading next summer. Going through hoops now trying to find a work-a-round on lowering the cost.
PS: Right now my already dry and aging skin is extra dry and I found the In-Shower Eucerin lotion helps a lot! Just be really careful about washing it down the drain afterwards because it can be very slippery. I found it was easy and fast to clean up after we got our hand-held shower system.
HRC says
Hi Linda
Thank you for your story, were there any side effects with Xolair?
I’m from the UK so may be able to have it prescribed on the NHS
Thanks
HRC
Linda Starr says
I was so scared of the possibility of an anaphylactic reaction in the beginning which is one reason I waited so long to try it. I had to wait several hours in the doctor’s office after the first few injections but the only thing I noticed is that two or three weeks after the first one, my belly became distended. Now at my age (72) that could be other things, but because one of the possible side effects of XOLAIR is–get this–parasites, I took a stool test which turned out negative. (Even the doctor’s office hadn’t heard that that was a possible side effect and it really would be kind of rare.)
I think I read here from the moderator that anaphylaxis can happen anytime after you’ve been taking the shots no matter how long that is…now that is a possible reason not to have them, if true. But the rash and itching got so bad in the summer I was barely sleeping which is very dangerous too.
Good luck!
David says
Hi HRC
I do live in the states. I’m from new jersey and we’ve been having some really cold weather lately.
I haven’t had any hives this time around with CU just very bad itching/prickly skin. I had an appointment
the other day with my allergist and he prescribed doxepin, so I’ll try it and see if it helps at all. He also mentioned Xolair as an option if I have no success with the doxepin. Like Linda mentioned in previous post, my doctor also spoke about a possibility for an anaphylactic reaction. So we’ll see what happens.
David
HRC says
Good luck David! Hope it goes well, please let me know if anything works
HRC
David says
Hi HRC.
Thanks. I’ll keep you posted. How’s the sweat therapy coming along?
David
HRC says
Hi David
Sweat therapy is going okay but it’s really difficult in winter, I usually have 2 powerful fan heaters directed towards me whilst I’m running on the treadmill and this helps me break a sweat quicker but it can be painful. If I go away for weekends the breakouts are more intense as I don’t always have access to the gym/treadmill at hotels and if I go 1 day without sweating the histamine build up in my body causing a bad attack. Antihistamines don’t seem to work, have you tried the diet recommended or used a humidifier? Hoping to try diet in the new year and purchase a humidifier
HRC
Linda Starr says
Prescription anti-histaimes didn’t work for me but last night I tried Benedryl and it did work! I hadn’t taken my half-a-Zolpidem (gen. for Ambien) yet, so I tried it knowing it would help me sleep. (For some reason I had a bad case last night even though most of those happen in the summer heat here in Phoenix.) I HATE the hangover though!!
David says
Hi HRC
Sounds like you have a good system going there with the heaters. That should help you to sweat quicker. I do use a humidifier because our home gets very dry because of central air. Unfortunately antihistamines aren’t great when it comes to controlling CU. As I mentioned in earlier post, I’ve been on doxepin for the past week. Doesn’t seem to be doing much. I’ll probably stay on it for another week or so and then stop. My doctor also suggested trying exercise desensitization. Basically working out until I get a reaction and then stop. Then try again increasing time and stop and so on. I’ve also tried the diet.
HRC says
Good luck David
Does the humidifier help? I’ve just purchased one, hoping it will help the dry air in my room, especially at night
HRC
David says
Thanks.
It definitely helps as far as preventing air from getting too dry. But as far as reducing symptoms, not so much. Either way you’ll still benefit from running it throughout the day. Dry air can make you more susceptible to colds and getting sick. What type of fan heater do you use?
HRC says
Hi David
I use 2 small fan heaters, there not anything different from the usual stuff that you can get in most shops. I’ve just received my humidifier so going to see if that he,ps in any way as the dry air definitely makes my symptoms worse. I’ve noticed that when a wear a jumper it seems to irritate my skin further along with other similar materials. Just ordered eucerin lotion and nettle root extract capsules after reading previous posts on this site from a few years ago. Have you tried any of these? Will keep you posted if they help……fingers crossed!
Thanks
HRC
David says
Hi HRC.
I have a couple of portable heaters in my garage. Maybe I’ll try using them. I actually just picked up a bottle of nettle root extract also. I took one today. I’ll let you know if it works for me. I hope you have success with it.
David says
Hi HRC
Any success with the stinging nettle? I tried it for a few weeks but it did nothing for me. I joined a gym that has a sauna and I’ve been sweating great within 10-15 minutes. Once I build up a good sweat I’m able to workout without any symptoms. It’s awesome.