HeatHives.com-Cholinergic Urticaria and Hives

Sorry that it has been a while since I have updated, but I have been extremely busy these past couple of weeks. But I wanted to provide a few updates below:

Update on Diet Progress:

As most of you know, I have been gluten and milk free for quite a while now. There have been some good results, but unfortunately not with the cholinergic urticaria. I still have CU, and I do not see any noticeable difference with the new diet.

However, being milk free has definitely helped my stomach and skin rashes (eczema) clear right up. I feel better as well. However, the cholinergic urticaria is still here full force. So I plan to continue to cut out milk for sure (probably for the rest of my life just because I have a severe intolerance now). However, I may slowly introduce gluten into my diet soon (Thanksgiving is coming up…yum yum). So basically, milk is still being avoided, gluten is once again an option, but in moderation (I will still avoid it if possible).

Update on Cholinergic Urticaria (hives)

As I mentioned before, I was going to attempt an experiment of more Vitamin D and sun exposure to see if that will help the hives. However, this experiment is definitely being placed on hold until it gets warmer. It is actually been snowing here recently, and it is freezing (my thermostat says about 60 right now).

Of course, with the cold weather, the hives are super intense if I get hot. As long as I am in my apartment (my ice box) I am fine. But if I go out or into a hot building, then I instantly break out in a very painful and itchy reaction. A couple of people have also noticed a big change in their cholinergic urticaria symptoms on the forum. So I hope everyone who’s hives are worse will make it okay through the winter and cold months.

Also, I had to go out today and run some errands, and I tried to take a claritin (antihistamine) to see if that would help at all. I am in such fear of breaking out now that it is so cold. Luckily, I didn’t have a reaction, but it wasn’t due to the antihistamine. It just wasn’t very hot where I went today while I was out. When I got home, however, my wife had made a salad with vinegar dressing, and the vinegar made me get hot and prickly, especially on my face. So the claritin didn’t help at all.

The bad new is, I can now confirm that I feel hung over after taking those things, and they give me a splitting headache! I really don’t know why I took it, I have already realized it doesn’t really help at all, but oh well.

I just hope I can tough it out through the winter and cold months, and when it gets warm I am hoping to get out a lot more and sweat!

Website/Blog and Forum Changes & Update

The website/blog portion:

As many of you have probably noticed, I have the comments turned ‘Off’ on the blog portion of this site. I never really explained why, but I felt like I should say something. First, I had so many great comments posted, and I really appreciate that!

However, for every 1 great comment, I would get 20 nasty spam comments (trying to sell me Viagra or something), and it was starting to take a lot of time sifting through all the junk to see the actual good comments. I do have a spam service on this blog, but there were still spam comments getting through. So I removed them completely. It is just way too time consuming dealing with all of that spam, and plus there is a forum if anyone wants to post anything. So I just feel like the comments aren’t really necessary since there is a forum, and I cancelled it out. I probably won’t ever bring the “comments” ability back, simply because it takes a lot of time, way to easy for spammers, and we have a forum to post info, thoughts, ideas, etc.

Also, I will probably be updating the design theme for this blog/website portion within the next few weeks.  I also have some plans to take more pictures (since I can breakout so easily during the winter), and also post lots more articles, and maybe even a video of a live outbreak??

The forum portion:

First, just let me say that since starting this forum, there has been so many awesome people that joined and posts made! Thanks so much! I have learned a lot, and it helps being able to relate with others. Also, I feel that we will really be able to help out each other and others with Cu in the years to come, and give any updates if our conditions change, a new treatment is tested, or if it goes away (or we find anything out).

Unfortunately, someone has decided that they want to spam the forum with lots of Viagra offers, and porn. That is NOT COOL, and I delete this as soon as I find it on there.

Because of the recent spamming post and fake registrations, I have temporarily removed the ability to post pictures within a post, and have disabled links. I have also removed the personal messaging option to prevent the “real” forum members from getting spammed.

I am working on a few other things to make it more secure, and I am trying to eliminate this kind of thing from happening. So please bear with me. If you see any fake posts trying to sell viagra or some crazy thing, or porn related content, please feel free to hit the “report to moderator” link if you want. However, I am on the forum several times per day now, and remove it as soon as I see it. But I want to apologize for anyone that might come across this junk until I can get it resolved.

I may be adding a few updates to the forum as well in the weeks/months to come. I may play with a design. Also, I may be adding new topics, and moving threads/posts under them to re-organize the forum a little better to make it easier to read and find information. So rest assured that I won’t delete any one’s post, however, I may re-categorize them under a different topic once I set everything up.

Also, remember that you are always welcome to post new ideas, suggestions/topics for the site/forum, and more. Even if you just want to get on there and vent about CU, your welcome to –just try not to use profanity please =). If you have any other suggestions on anything from content, to surverys/polls, or anything else, just let me know!

Itching in public…it isn’t fun, right? Hives can attack us when we least expect it, and in the most uncomfortable of situations. At work, at school, at social events, parties, home, and everything in-between. Personally, I HATE having a cholinergic urticaria reaction–so I generally do everything in my power to avoid it as much as possible. So I thought I would share a few tips on how you can cut out  your chances of having to itch and scratch like crazy in front of the public’s eye. If you have had CU for a while, you probably already do some of these things, but if you are completely new these tips may help you out.

How to Manage Cholinergic Urticaria Reactions in Public:

• First, do everything in your power to avoid the reaction in the first place. This means avoiding your triggers (heat), wearing light colored clothing on sunny days, wear thin clothing, try to control the temperature if possible, and take it easy when walking to places. Take deep breaths, avoid things that may embarrass you, or make you anxious. The best way to deal with a reaction is to avoid it completely in the first place.
• If any combination of meds (such as antihistamines) help at all, consider taking them for that one day (of course, follow the dosage instructions). This may reduce the attacks, or prevent them all together.
• Try to exercise in the morning, to clear out the reaction and also your histamine. This can be painful and even dangerous. However, some people get up early and do a hard workout routine to get the hives out of their system for a few hours.
• If you do have a reaction in public-Don’t freak out! Getting nervous and thinking, ‘Oh no, people are going to think I am a freak’ usually only increases your temperature and makes the breakouts come on faster and more intense (trust me, I know). So try to relax and breath. One thing I have noticed is that it feels much worse than it looks. Most people will not realize you are having the most excruciating pain in your body, and the only thing they may notice is your scratching.
• At the moment you start to break out, try to quickly go where you can privately scratch and cool yourself down. If you are at work, school, or a store, try to go to a restroom (you can go in a stall and scratch yourself until it goes away. You can also splash some cool water on you, which could help stop the reaction. This can help out majorly. The freezer section may help at the store, but not always.
• Consider carrying an ice pack or small squirt bottle or water bottle- This is a strategy I have used often in the past. In fact, when I had my first trip to the dermatologist I took a squirt bottle with me and started spraying myself while I was in the lobby (I had a reaction). It can help to cool your body temperature. An ice pack also works great, and you can store them in a backpack, lunchbox, or briefcase-and then slide it in your pocket while you are going to be in public. As you probably know, cooling your body off quickly can sometimes stop the reaction immediately.
• Try to make your scratching random and don’t draw attention to yourself.  I usually just try to simply scratch myself and “pretend” like I might have an ordinary itch like anyone else. In reality I am usually wishing I could rip my shirt off and roll around on the ground scratching like crazy! But  scratch a couple of times of your face, then secretly scratch your back, then your arms, etc. in a random and quiet fashion makes it less obvious. After all, we know we can’t really resist scratching. I have tried, and it is nearly impossible (it is like not blinking for 10 minutes). If you can sit there and not scratch, then you have my greatest respect, because I just can’t do it. The funny thing is, I have to scratch, but the scratching really doesn’t help much. Cholinergic urticaria is the itch you must scratch, but the scratch that can’t relieve.
• Keep your fingernails short! If you have long nails (ladies or lazy guys) then you can really damage your skin and leave monstrous claw marks after a bad CU hives attack. I keep my fingernails almost to the nub! Well, not really the nub, but let me put it this way, I never have fingernail marks that stay on my skin after the attack clears.
• If you are in school, try to sit in the back of the classroom. At work, try to sit in the back office or avoid contact as much as possible. This will ensure that you have a quick exit route if you ever need to get out quickly.
• If you can’t do any of the above, and you find yourself having a monster hives attack with no way of escaping or cooling yourself down, then you may just have to wing it and tough it out! I usually just scratch and try to get through it. My hives usually start itching bad, then I get this burning sensation that radiates down my body, and then finally relief. After the hives are over, I am usually tired, but I have also found that after a severe reaction, I will usually be okay for a while. So if you have this reaction, I feel for you, but at least it will probably go away within a few minutes, and hopefully you won’t be too wiped out afterwards. Of course, if you ever start feeling like you can’t breathe (anaphylactic shock), call the hospital or 911 as soon as possible!
• Last but not least, if people do notice your scratching, just try to explain it in terms they will understand. I don’t always feel like sitting there and explaining to people, “Well I have this rare hives condition in which my body breaks into hives when I get hot and I itch like crazy.” You will get a lot of raised eyebrows when you say that. So sometimes I will just say, “Man I am having an allergic reaction to some food I ate, or my detergent.” People can at least understand that a little better. But I only use that when I am not in the mood to sit there and explain my crazy condition called cholinergic urticaria!

One thing that I have noticed is that celebrities can do so much to progress the treatments, research, and cures for diseases. The reason is that their fame and money play a huge role in getting attention and research to particular diseases.

For example, Michael J. Fox (the actor from the Back to the Future movies) developed Parkinson’s disease, and has been instrumental in finding new treatments and also getting lots of research for the disease. Christopher Reeve (the actor that played Superman) also is another great example of this. He was paralyzed after a horrific horse riding accident, and for the remainder of his life (he has passed away now) he was dedicated to spinal cord and paralysis research, and in the process really made great advances towards a cure, research, and more.

All of this just proves my point: We need a huge celebrity or business tycoon to come down with a severe and debilitating case of cholinergic urticaria. Don’t get me wrong, I wouldn’t wish this condition on my worse enemy! But it would be nice to get some serious attention, research, and money into finding out what causes this and how to fix it (if it is possible to fix it without any harsh side effects).

In the past I have searched vigorously to see if any famous people have ever had this condition. My searches have always came up empty. I did a long time ago see that someone (I think they directed plays or something) had this. But I don’t think they were well known (enough anyways), and now I can’t even find the short article (although I do recall that it didn’t really say much).

So I guess that means that one of us will need to become movie stars or multi-millionaires, or famous in some way, and then get attention to this condition in any way they can…..Any volunteers?? Hehe. Well I guess it would be kinda tough after you already have CU, but certainly not impossible!

One thing that has always stumped me is the way cholinergic urticaria sometimes seem to just magically go away for some people after a few years. Most medical articles seem to suggest that cholinergic urticaria only lasts approximately 7 years in the majority of patients. It does, however, also say that some people retain the condition for as long as 20-30 years.

But why does it do this? This just absolutely stumps me. What caused it to happen in the first place, and then what is it that makes this decide to just go away? Does some event, food, or situation somehow trigger our immune system?  Does something in our bodies (such as a gland) over produce a chemical that throws things out of whack, only to re-correct itself years later?

It just doesn’t make sense to me. I am sure there must be some kind of explanation, however, they obviously don’t know at this point. It seems that the first step to permanently finding a cure, is to find the cause. If they don’t fully understand why cholinergic urticaria occurs, then they will never be able to fix it.

As I have mentioned before, I have recently been trying to get out in the sun to see if it helps at all with the hives, however, this is already becoming difficult and I may have to cancel this experiment until I get a house (or until summer finally arrives again). This past weekend I could not get out at all. It was rainy one day, and cloudy and extremely cold the other day. I did manage to sit outside for about 30 minutes yesterday, but I was freezing the whole 30 minutes of time. Today it is cold as well, and rainy, and I haven’t been able to get out today at all either. So I will try to get out as much as I can, but it looks like I may be waiting until the summer for sure.