Hey everyone,
Okay, in my last post I talked about how my hives have been getting better. I want to tell this entire story of what has happened, what I’ve figured out, and exactly what I’ve done step by step. I’m also going to tell you about my “hypothesis” that I’ve been testing. No details will be spared! However, this is going to take some time. I have so much to tell. I will try to post nearly every day until you know the full story.
But so that everyone can understand my full reasoning and experience with this, let me start at the beginning.
My Brief Recap of Cholinergic Urticaria Thus Far
Okay, so I got this when I was 18 years old (I’m 28 now). Out of nowhere, I suddenly started getting this odd prickly/itchy sensation when I got hot, embarrassed, etc. I had no idea what was going on, and this continued getting worse and worse. After a month or so, I went to the doctor. Of course, they tried several things (mostly antihistamines and a steroid shot), but nothing really helped. You can read the extended details of my “cholinergic urticaria story” if you want.
My hives continued for several months, getting progressively worse. Then, around early summer, my hives got better and better, until the point where I started sweating naturally. After this, my hives vanished without a trace for about 2-3 years. Life was good, and I nearly forgot about those months of torture.
Then, after I moved out into my apartment, by body went haywire. Suddenly, I started becoming intolerant to a lot of foods. I developed these odd rashes (which at the time I thought was ringworm!). Then, I noticed I started to get that “itchy thing” again (my hives). This got progressively worse as time went on.
The rashes got so bad and I was trying everything to stop it. I was trying corticosteroid cream, anti fungal cream, and even diluted bleach (don’t do that!). The steroid cream would make the rash get slightly better (only because corticosteroids crush your immune system’s response), but it would come back. Eventually, through much experimentation, I realized my rashes were mainly due to milk and some food intolerances I had developed out of nowhere. This was so odd because my entire life I have never had issues with food allergies at all.
So I cut those out of my diet, and the rashes cleared up within a few weeks. The only problem was, my hives were still there! Since my rashes improved with diet, I naturally assumed that diet must somehow be connected with cholinergic urticaria. So I tried my best to eliminate foods I knew upset me. Despite my efforts, my hives didn’t improve.
But about this time, my hives weren’t severe. I would say maybe a 4-5 on a scale of 1-10 (with 10 being most severe). I mean, I could have an attack, and then I would be fine for the rest of the day. I could even exercise occasionally, and after an attack, sweat would usually come out. So my hives were frustrating, but manageable.
Over time, my hives started to get a little more serious. I was still eating a lot of food at this time (but avoiding certain ones like milk and dairy). So after a few months of dealing with my hives, I decided there MUST be something going on with the food I am eating. I went on an extreme “allergy elimination diet.” Basically, I cut 100% of all foods out of my diet except for white rice with diced tomatoes in it.
This diet was very hard, but I suffered through it. I managed to make it about 1-2weeks on this diet, and what happened during this time was odd. The first week was pretty much normal. But by the end of the second week, I could feel that my body was changing. My hives got much less severe. In fact, I felt like I was being cured. I could do sit-ups for a much longer time before I would get prickly at all, and even then, it wasn’t as painful.
I also felt better physically. For example, before when I was in my bed with the covers on me, my body always felt sorta “irritated.” As if I was on the verge of hives any second. But towards the end of this diet this feeling wasn’t there. Like my whole body had reduced some inflammation or something.
But there was a problem: This diet was so hard to stay on. After about 2 weeks, I started eating more veggies/lean meat. But I was still eating VERY lean. So after about 2-4 weeks of eating rice/very lean veggies, and a little meat, I caved in. I went back to eating my old ways. I felt dramatically better, and my hives were much less of an issue. In fact, my hives stayed this way for a few months.
So I kept eating bad, and of course, my hives slowly got worse and worse. I ate more and more junk food, even a little dairy and milk here and there, etc.
I Learned A Little Trick Through All This
Through all of that diet experimentation, I had learned a little trick. The trick for my body was this: I could eat dairy in small moderation for a few days, and then stop. This way, it wasn’t enough to cause the rashes to come back, and I could still eat my favorite foods from time to time. I also learned this trick: Whenever my hives got pretty bad, I could go on an extreme “lean food diet” to make the symptoms get dramatically better.
So for maybe a year or two, I kept this up. I would eat junk food, bad meals, pizza, etc. Whenever my rashes showed signs of coming back, or my hives started to get really sensitive, I would back off and eat lean a couple of weeks. I would do this back and forth. I would eat bad a few weeks/months, and then eat lean for a few weeks. It worked like clockwork.
It was also frustrating, because I couldn’t understand why my hives got better, but wouldn’t go away 100%. I kept wanting to think that diet was somehow involved, but I couldn’t pinpoint anything. I mean, I just couldn’t pinpoint a certain food causing it. All I knew was that when I removed a lot of foods and ate super lean, my hives got better (although it took a couple of weeks).
When My Hives Changed For The Worse
So like I said, my hives were manageable, and I could use “the trick” to make my symptoms improve when they got bad. I still hated having hives, but at least I could deal with them. That all changed in the summer of 2010 (last summer).
Things had been going well. My wife and I bought our first house, and we were excited to do a little landscaping. So all spring, we were planting flowers, adding mulch, mowing the yard, etc. Throughout all this, my hives were only minimally bothersome. Many days, I could go straight into sweating and not be bothered at all. Other days, I would get really itchy for a minute, but then the sweat would come out.
So like clockwork, I would go outside, endure a little itching, and then be on my way for the rest of the day hives-free and sweating normally.
Suddenly, this stopped. By early summer, my hives went from about a 4-5, up to about a 9. I had never felt anything like it. I distinctly remember walking outside one day about a month after our main landscaping. It was hot, and we were going to do some more work. I started working, and my hives started to itch.
So I thought to myself, “okay, no big deal. I’ll be sweating a minute from now.” I told my wife while we were working, “Hang on, my hives are coming out. Wait a second until they are done.” The only thing is, they didn’t stop this time. I kept scratching, but they didn’t show any signs of stopping. I waited and waited. They kept getting worse.
Eventually, they got so bad, that I ran for the house, ripped off my shirt and clothes, jumped in a cold shower, and was scratching myself frantically. My skin was BLOOD RED from head to toe. I had THOUSANDS of tiny pinpoint hives from head to toe. This was very unusual for me.
Not only that, but I tried to do work again. Same thing happened. I tried again later. Same thing happened. Severe hives every time.
The Hives Stayed Severe All Year
For the entire summer, my hives were bad like never before. I couldn’t do ANYTHING. My poor wife had to mow the lawn, trim the weeds, and more. I was practically housebound. I was a prisoner in my own body.
When I did even the slightest physical activity (or went into a hot room), my hives went nuts! They have been like this since the summer (up until a few days ago). I was depressed, miserable, and hopeless.
Here’s what’s weird: After my hives started being this severe for the first few days, I instinctively thought, “Aha, I need to clean up my diet.” So I fasted for 1-2 days. I then ate really lean foods for a week or two.
Nothing happened. My hives were just as severe as ever. I couldn’t believe it. The ‘trick’ had always worked before, but not this time. So after failing with my “trick,” I resumed to my normal diet, but I made 100% sure to cut out all gluten, milk, excessive sugar, etc.
Nothing helped. As you all probably know, I also tried many things throughout this time period. I was so desperate that I went to the dermatologist (waste of time). I tried new antihistamines. Didn’t work. I pleaded for a steroid shot hoping that would do something. Nothing. I tried vitamins & supplements. Nothing. I tried a low histamine diet. Nothing.
I also tried everything to sweat and exercise. Sauna suits in my bathroom while exercising with a heater. Nothing. 100 degree days driving in my car after the greenhouse effect. Nothing. Sweat would not leave my body. Instead of sweating, my skin would be flooded with flushing redness and thousands of prominent pinpoint hives.
My wife was really worried when she saw my body after an attack. I had a few attacks that were so severe, I almost felt as if I was going to pass out or go into shock. I felt dizzy and terrible.
Every single activity I did was tremendously hard. I had to take breaks every 5 minutes doing even the slightest task (even in 20 degree weather).
A Little Good News About My Hives Emerged, But Not For Long
After suffering severely with cholinergic urticaria for months, with a debilitating case of it, I finally got to try Allegra. As most of you know, Allegra (the antihistamine) used to be available by prescription only. Since this was cost prohibitive (and I didn’t know if it would work), I didn’t bother with trying to get it from a doctor. But it finally came over the counter in March 2011.
So I tried this, and it worked quite well. The first couple of times I took it, it pretty much stopped the hives in my normal daily routine (so long as I didn’t do anything physical). It continued to work well for about a week or two. Then, I had to replace my patio door that was leaking, and some other heavy “grunt” work. I knew my hives would be a major challenge.
So I started a new antihistamine regimen. I had to add 2 zantac (an H2 antihistamine) a few hours after taking my Allegra. This also worked quite well at stopping the hives. I would get a little prickly, but I could manage it. I still didn’t sweat. (NOTE: Please dont’ take anything on this page as medical advice. I am only sharing my experience, and please talk to a doctor for any medical advice). This antihistamine combo may not be safe for everyone (or even me!).
But here is the problem: For some reason my body adapts REALLY fast to antihistamines, and they quickly lose effectiveness. They literally work for about 2-5 times at most, and then they quite working. Case in point: Now when I take an Allegra, nothing happens! My hives were soon no longer responding to the Allegra, and only slightly working with the Zantac plus Allegra. Sigh.
But it is around this time that I started to notice something. This something that I noticed, would eventually lead to my latest hypothesis, which I feel is the reason my hives have gotten better. What was it that I found out? See the next post to find out.
