Hello Everyone! I appreciate you stopping by & viewing the website.
My name is Ben (I go by HivesGuy on the forum), and I am the owner and founder of this website. I am married to my beautiful wife Sarah (she is currently an RN). I have had cholinergic urticaria now (off & on) for around 11 years (it started when I was 18). Thankfully, I was able to get it under control in 2011, and keep it that way.
I live in the beautiful mountains of northeast Tennessee, and I own my own business. I’m also a born-again Christian, and turning to faith in Jesus Christ is the single most important event in my entire life. It was a life-changing moment.
I don’t have any other type of medical issues that I am aware of other than this crazy hives condition. As far as hobbies, I hardly have time for them these days. But I enjoy carpentry & building things, I study & think about the “deep” questions in life (such as religion/science/how did we get here type of stuff), and I read the Bible/study things like that quite often.
I also like to watch movies (mostly documentaries or biopics) when I get the chance, and spend a lot of time doing things online. I also read a lot of books (mostly educational non-fiction).
About My Chronic Cholinergic Urticaria Hives
This “heat hives” type condition is a very frustrating thing to experience. It can literally change your life, social behavior, and more. It can lead to bouts of depression, aggravation, frustration, and (of course) the intense itching/pain associated with it.
It is especially frustrating because a lot of people don’t really know much about this condition. Doctors seem to have limited knowledge, and friends/relatives seem even more clueless. It is sometimes hard to find someone to relate to, and talk to about it. I will share my story below after a brief word about this website. If you would prefer to watch my hives story, you can view the video below:
About This Website
My main reason for starting this website is so I can publish information about this condition, talk to others, and to have a place where other people can ask questions, talk about treatments (what has helped them & what hasn’t), and so they can know that they aren’t “alone” in the world. For a long time when I first had this, I kind of felt like a “freak” or something. Like I was abnormal & I was the only person in the world that has this condition.
But the truth is, a lot of other people have cholinergic urticaria, and lots more people have other strange hives related conditions. So you can know that you aren’t alone in this.
I also hope that over time, maybe we can even find a way to cure, or at least treat or manage this condition to the best of our ability. I never lose hope that one day I may not have to deal with these hives ever again.
There have been some great posts in the forum, and there are a lot of great people who visit this site. I appreciate everyone’s contribution. Even if you just read & don’t post because you are shy, I still appreciate visiting the site.
I also want to let everyone know that you can visit the cholinergic urticaria forum or join at any time, or feel free to ask any questions, post ideas you have about this condition, or anything at all! That is why the forum is there. You can even make up a fake name, etc. if you are shy or want to remain anonymous (I often do this myself). I really don’t care what name you use, because some people may want to stay anonymous & I completely understand & respect that.
It is there so you can ask questions, post ideas, talk to others, or even just “vent” about your frustrations. I always try to respond to every question or post as well. Even if I don’t get a chance to respond to a post, rest assured that I read every single one!
Whatever you want to do, the forum is there for a resource. Just please keep it “rated G” and avoid bad language, arguing, etc. Let’s keep it a nice & friendly resource and exchange. We all have this condition, so in a way we all have something uniquely in common. Let’s help each other, not harm or insult one another.
Also, if a medical doctor/dermatologist that specializes in hives would like to talk about new discoveries, ask us hives sufferers any questions, or anything at all, I would greatly welcome you to do so. Anyone doing any research into this, I would be happy to answer any questions, and I am sure a lot of members in the forum would be happy to answer questions as well.
How Can You help Support This Site?
I would like for everyone in the world that suffers from this condition to be able to come together so that we can discuss our symptoms, vent our frustrations, & learn more about this condition. If you are interested in supporting this site, here are a few things you can do to help:
1. Talk about this site in other related forums, websites, social networking sites, etc. that you may have visited about CU. I would like for everyone to know about this site so that they can learn more about cholinergic urticaria & have one resource that focuses on this condition.
2. If you own a website, blog, forum, or just participate in social networking sites such as: MySpace, Digg.com, Facebook, etc, you can mention our site. We would also greatly appreciate any links to our site (or an article on our site).
3. Bookmark this site (or add it to your favorites) so that you can keep coming back for updates & more information. Any participation in the forum, updates on new treatments that are working, or if your hives go away would be tremendously helpful to all of us. I always welcome any posts/ideas/information anyone can offer. If you have any ideas for a survey/poll, or anything else, feel free to let me know. As I have already mentioned, there have been so many great posts on the forum, and I really appreciate everyone taking the time to share information/ideas. Thanks again to everyone!
Any of the above would be greatly appreciated. Since this condition is relatively rare, it helps to find those that suffer from hives so we can support each other & find ways to get through it.
- Age when hives appeared: 18
- Years of having hives: Hives have been on & off for about 7 years
- Ethnicity: Caucasian American (white)
- Sex: Male
- Any other known allergies: NO
- Hair-Dark Brown; Eyes- Dark Brown
- Height: 6″0 and 1/2 inch
- Weight: About 155-160 (good shape/fairly muscular/fit)
- Exercise: Yes, on & off
- Drugs: I do not take any prescription drugs or non-prescription drugs. This means no alcohol, pills, smoking, or anything else. 100% Drug free & Always will be!
My First Hives/Cholinergic Attack?
I was 18 years old. I had actually just turned 18 about 3 months or so before my first hives attack. I had just gotten out of the shower. It was winter time outside (cold). I went into my room to get dressed. I put on a pair of jeans, a t-shirt, an a sweater.
I am an energetic type of guy. I like to jump around a lot, throw punches in mid-air, etc. My wife laughs at me and says I “hop.” I just get excited & rushed with adrenaline sometimes & just have to do something. Anyways, I got dressed & was excited because I was about to leave to go to the store (I know it doesn’t take much to excite me huh?).
Suddenly during my rush of excitement, I became hot & I started feeling this strange tingling sensation over my upper body. It was something I had never felt before. It itched (really badly), but at the same time is was prickly & kind of hurt as well.
I was like what in the world is going on here. I started scratching, yet it didn’t relieve the itch. You have to scratch, but yet it provides no relief. It got worse. The feeling spread through my entire upper body (chest, face, scalp, back, etc.). I was in complete torture.
I didn’t know what was going on. My face & chest became red (flushed) I was freaking out. I tried to cool myself off, and finally the sensation quit. “What was that,” I thought to myself. Little did I know it was just a taste of what would come to be a major change in my life. It was cholinergic urticaria rearing its ugly head at me.
More Cholinergic Urticaria (Hives) Breakouts
After that day, it seems any time I got hot, excited, nervous, etc. I would start breaking out in the same type of hives. I would be the exact same experience as the first breakout. This condition literally came out of nowhere.
It was mostly on my upper body, and my skin would usually become flushed (red) where I scratched & you could see the marks on my body. In a strong break out, small red pin points would breakout on my arms and chest for a few minutes, and then they would disappear within 15-30 minutes after I cooled off. The pinpoint red dots (hives) did not always come out during an outbreak. They only appeared during severe breakouts that lasted a few minutes & were extremely intense.
Also, when I started to breakout, if I could somehow cool myself off really fast (by rubbing an ice cube, or going outside in the colder air, or jumping in a cool shower), then it would stop the breakout immediately. Weird.
The breakouts seemed to get worse over the next month. Until the point I would basically break out in a hives rash if I did anything that caused my body to heat up (laughing hard, exercise, getting embarrassed, doing physical work, jumping around too much, etc.)
I thought I was going crazy! Finally I broke down & told my mother (I was still living at home at the time) that I had to go to the doctor. I prayed there was something simple wrong with me that I could cure by taking a pill. BOY WAS I WRONG!
My First Visit to the Doctor?
By this point I felt I needed to see a doctor. So I called & made an appointment with my regular care physician. As I stated above, I was breaking out much more frequently.
My every day simple tasks (such as going out in public) was very difficult because I would break out in the most intense pain & itching. I felt very odd. Like I was some kind of genetic freak or something. I felt out of place, like I was different from everyone else.
Finally, the day of the doctor visit came. I was nervous, yet hoping that I could put an end to this painful & humiliating experience.
The doctor walked in. “Hello…how are you doing today.” “Pretty good, how about you,” I responded. I proceeded to tell him of my problem. “I start breaking out in this really intense itch, and it is really uncomfortable & painful. It is mostly when I get hot.” The doctor stood there a minute. Then the diagnosis came… “You know, I think your problem is dry skin,” the doctor said. Dry skin? I thought to myself, “how in the world does dry skin make you break out in hives?” He continued to tell me a few lotions that I should try.
“But, this is really intense. Like I am breaking out in a rash or something. Are you sure it is just dry skin,” I said. “Yes,” the doctor said.
So I went to the store & bought the lotion he recommended. I tried it for a few weeks. NOTHING. I became frustrated. I called & asked for a referral to a dermatologist. I thought maybe they would know more about my problem.
My Trip to the Dermatologist for my Cholinergic Urticaria
The dermatologist was a friendly guy. I was optimistic that he would be able to fix my problem of breaking out in this intensely itchy rash. After all, dermatologists specialize in skin. It was very warm in his office (rare for a doctor’s office/hospital), and I was actually having a breakout reaction while he was talking to me.
I pulled down my shirt. “Hmmm, I can definitely see some flushing in your skin,” the doctor replied. He asked if I had an infection of any kind. I told him no. He looked puzzled. He then explained that for some reason, my body was “stressed.”
He prescribed me some pills (hydroxyzine), which was a fairly powerful anti-histamine (anti-histamines are simply “anti-allergy” pills). People take them often for simple allergies such as pollen, etc. Yes… Finally a pill that would cure me. Or so I thought.
I took the hydroxyzine right away. I was excited that I could finally put this whole experience past me & move on. It only took about two hours for it to kick in & it knocked me out completely. You see, those anti-histamine’s have a major tendency to make you extremely drowsy. So I fell fast asleep, even though it was still in the late afternoon. I forget now how often I took them, but I know it was at least once a day.
For the first few days, I really thought this stuff was working. I felt better. I was tired for those few days, but I didn’t care if it was going to cure my cholinergic urticaria (hives). Unfortunately, after my body started to adjust after about a week, I quit being drowsy. I also started itching again with hives. Bummer. I was very frustrated.
I called the dermatologist & scheduled another appointment. I told him the medicine wasn’t working & that I needed to come back again. By the way, at this point I was unemployed but a full-time college student. I didn’t attend the next semester because the hives were bad. Plus I really wasn’t sure what I wanted to do with my life anyways.
I went back to the dermatologist. This time, he decided I should get a shot. I am not sure exactly what the exact chemical was, but I do know that it was a steroid shot. Looking back it was probably something such as prednisone or some similar steroid.
“Maybe this will help,” I thought to myself. The steroid shot was on the side of my rear end. It stung, but I have never been the type to fear needles or shots.
I went home. For the next few days, nothing changed. I was still breaking out & the steroids had no apparent effect. At this point. I lost hope. I was tired of taking medications that didn’t help. I always worry anyways about these crazy drugs these days. Many times I think they are more dangerous than they are helpful in the long run.
Since nothing was working, and the doctors seemed stumped anyways, I decided to stop seeking medical advice. I also stopped taking my hydroxyzine. I reasoned that it made no sense to keep taking a pill if it wasn’t helping me.
For the next few months I just toughed it out. I avoided getting hot as much as possible. I also tried various “home remedies.” For example, I tried lotions, I tried making it more humid in the house, I tried taking showers less frequently, changing detergents, changing soap, I even tried avoiding certain foods in case I was allergic, etc. Nothing worked. It was torture. I would carry around a squirt bottle of water. When I would get hot, I would start to spray myself to cool my body down so I could avoid a breakout. Summer was soon arriving. And with it was a new beginning.
My Cholinergic Urticaria Hives Finally Gone? Could I be Cured?
By summer, I was still breaking out. But I had not given up complete hope. I would walk outside & immediately breakout when the hot summer sun hit my skin & caused my body to heat up. I was still 18 years old. It started about late November or December, and by now I had tried doctors, medicine, & other things & I still had hives. I was approximately June. In that time, I had become an absolute hermit. Rarely leaving the house due to my weird reactions in my body.
One day I decided I was going to go outside on a hot day & wash my car & really clean it out. So I did just that. At first, complete torture. Hives were breaking out. I was itchy. It was intense. Then, something happened that didn’t happen for months before. A drop of sweat!
That’s right. Sweat! In the months before, I simply couldn’t sweat. If I tried, I would break out in hives before I would even sweat. The Cholinergic Urticaria just wouldn’t let me get hot enough to sweat. Instead, I would itch instead of sweat.
Yet, finally a drop of sweat. It felt great. I could actually do something & sweat. The hives quit, and I was outside on a hot day working & sweating. WOW. I worked most of the daylight hours working on my car & detailing it. The next day I did the same thing. At first, I got itchy & had a hive attack. But then it quit, and the “green house” affect in my car made it so hot I began to sweat again. I worked all day again.
Finally, my hives quit coming out over the course of the next week. Plus it was summer & the air conditioning was running in my house. It felt very comfortable. I had no hives outbreaks for a long time. In fact, a lot changed in my life. I met my future wife & we started dating that summer. I turned 19, then 20, 21, 22. No hives. I had even forgot about it for the most part. I was back in school. Everything seemed A-okay. Life was looking great. But then…
My Cholinergic Urticaria Hives Come Back with a Vengeance
Just as things were looking great for a few years, my hives came back. This time, with a vengeance. How did it come back? Well, very similar to the way before. It was winter, I was now 23. My wife & I had moved out into our own 1 bedroom apartment.
I was working part-time at a major retail store (I hated it), and I was also back in college working on my business degree (majoring in accounting-also hated it). I wasn’t too happy with my situation. I didn’t know what I wanted to do with my life, I really didn’t like this accounting stuff anymore. On top of that my hives started attacking while I was at work, and school. Very uncomfortable, and very painful. Not only did my hives come back, but something even worse was happening. I was having a rash come out on the back of my neck. It was a small rash (about the size of a penny). But it was itchy.
Then it got even worse again. Now, the back of my legs, neck, and parts of my arm was breaking out in this rash. It wasn’t contagious (my wife never has gotten anything I had).
It looked kind of like ringworm in some areas. In fact, I thought it was ringworm, but after a few unsuccessful attempts at treating it, I realized it was just eczema (dermatitis) rash. It responded well to some steroid cream. But the hives did not change. In fact, they worsened over the next year. Fast forward to today when I am writing this.
I am now 27. I dropped out of college 1 semester shy of graduation (not only because of the hives but I just simply didn’t want to do accounting or work for anyone for the rest of my life). I also quit my terrible job at the retail store (to this day I can’t even shop there because I hated that experience so badly).
I have since started my own business. I still break out in hives. The eczema rashes are gone (thankfully). But I still have this cholinergic urticaria thing. It drives me nuts. It is such torture. I mean it can literally bring me to my knees in pain & intense itching.
That is my motivation to create this website. To share my story with you. To help you in your struggle against this mysterious & yet annoying condition. To help us to come together & talk about our feelings, treatments, ideas, and more. Also, to maybe find a common link, successful treatment, cure, or something that can help us put this behind us for good.
I will write as many new articles as possible. I hope you will keep coming back to this site! Thanks for visiting. If you have this condition…don’t give up hope. My prayers are with you. We will overcome this thing together. I promise! It is important to never give up hope.
As I’ve mentioned both on the forum and on my cholinergic urticaria blog, my hives are now 100% under control. I can sweat, workout, and live life (finally). What cured them? First, I never stopped praying, and I credit God with blessing me with the answers. I extensively worked on my diet and removed and experimented with many foods.
This was about 80% of the reason my hives went away. The other 20% can be attributed to regular exercise and sweating, as well as going through an extensive “hypoallergenic” phase, where basically I have bed sheet covers, shower filter, use Eucerin lotion, etc.
I hope this is my last serious battle with chronic hives, and that I can retain this for the rest of my life. For those of you still suffering, I hope this website and forum will help you. May God bless you, and I pray that your hives go away as well.
Important Medical Disclosure
I also just want to briefly say that I am NOT a doctor or expert on this condition. Please do not confuse anything I say on this website at medical advice. You should always consult with a medical doctor before trying any medications, or stopping any medications.
I have no medical training whatsoever. The only authority I can provide is that I have suffered from this for several years. I also do extensive research online by reading published medical articles related to cholinergic urticaria (CU), research forums, websites, etc.
I may post my own personal theories, experiments, medications, etc. Again, these are my personal opinions, ideas, experiences, and thoughts. I just like to share them for anyone that may be interested.