Heat Intolerance

After doing some research, I am pretty convinced that I suffer from ever-worsening heat intolerance. Heat intolerance is pretty common in chronic illnesses like Late Stage Lyme, Graves' Disease and, especially, MS. For as long as I can remember, heat has been a problem. It used to be that being in the heat was simply uncomfortable and embarrassing. I've always been pretty fair and knew better than to spend much time in the sun. I've also lived in Florida my entire life, an unfortunate situation I hope to correct as soon as possible, so staying cool and out of the sun has never been easy. 

For the longest time my biggest frustration with the heat was how much it made me sweat. I always seemed to respond more quickly and dramatically to the heat than everyone else. It takes only seconds outside or in a hot car to leave me drenched with sweat. It's frustrating and embarrassing because it's always hot and I'm always the one with the problem. It makes it impossible to feel clean. And since it is hot 99% of the time in Florida, I never seem to get a break. I've really never met a single person who suffers from this sensitivity to the degree that I do. Years went by before I learned that it was connected to a larger problem. But even after my diagnosis with Late Stage Lyme Disease, I still never met anyone else who had such a problem with the heat. Sure, I knew people who disliked or were made uncomfortable by it, but never as badly as me. No one I know has to go to the lengths I do to manage the heat. I wear undershirts and a good antiperspirant daily. I cool my car down before I get into it. When I drive, I blast the AC then gradually raise the temperature as I get close to my destination to avoid the shock of the change in the temperature when I get out. Even these few measures seemed a little excessive at the time.

But that was all before. Things were manageable, kind of, before narcotic pain medications and the progression of the disease. A common side effect of narcotics, along with some other drugs, is increased perspiration. Perfect. The progression of this illness has brought me tons of new symptoms and caused an exacerbation of every single old one as well. Shortly after my diagnosis of Lyme, I had a doctor who instructed me to avoid ALL sources of heat including the sun, hot cars, saunas, hot baths or showers, heating pads and even hot drinks. It was my understanding that the heat can make the infection worse. Plus, I learned early on that heat was not the way to handle my joint pain. The few times I tried it, it made it much, much worse. Ice has always provided instant relief for my particular brand of joint pain. But, maybe she just meant that heat intolerance is common in Lyme and not worth the frustration. Maybe she was referring to what she knew was my rather severe heat intolerance. But now the heat intolerance has become almost unmanageable. First of all, there are lots of new things I have to do to to try to get back to the level of discomfort I used to enjoy. The new procedure has involved getting an even better antiperspirant, never getting into a car before it's cooled down, getting tinted windows, bringing ice packs with me in the car even when I'm not in terrible pain, avoiding wearing light colors because even undershirts aren't enough sometimes, wearing light-weight cotton skirts even at home where it is never cool enough, putting up blackout curtains in my bedroom, putting a small fan in the bathroom so I can attempt to put my makeup on, carrying a paper fan everywhere I go to fan myself when I get desperate, asking everyone I know to turn their AC down and, finally, taking Xanax sometimes solely for its ability to reduce sweating (seriously, it's pretty cool, check it out:  http://www.medicinenet.com/alprazolam/article.htm). It's fucking exhausting keeping up with all of it. Even with all of that, I still can't always manage to stay cool. It's actually gotten so bad in recent months that I avoid all plans, appointments and errands in the afternoons. I also can't take showers in the afternoons because I know I will never be able to cool back down. I try to do as much as possible in the evenings. 

About a month ago, a new type of episode started suddenly. To avoid confusion and simply because I like the way it sounds, I will call them 'spells'. The first spell happened after a late afternoon/early evening dinner during which we were seated outside. It was an extremely hot day and I was outside for nearly 2 hours. I knew it was going to be a problem so I took a xanax, used my paper fan and drank ice cold water the whole time. Then, out of nowhere, I felt like I was going to pass out. I don't mean I felt tired, I literally was going to faint. I had this overwhelming, desperate need to lie down. I also felt extremely weak, heavy, tired, thirsty, nauseous, and panicky. The panic turned into a full blown panic attack with hyperventilation, despite the xanax that I originally took to keep the sweating to a minimum. The weakness was the most startling and severe symptom. I had to be driven home. I laid down in the passenger seat of my car and got directly into bed when I got home. Actually, I had to be helped out of the car and into bed because I felt so weak. Well, really, I had to be held up and steadied just to walk into the house like a frail old woman. I could kind of make sense of everything, except for the nausea and panic. I assumed that I had overdone it and that I just needed to rest. I knew the perils of wearing myself out during treatment. To make matters worse, I spent the whole first part of the day baking the cupcakes I brought as a gift to the dinner. I knew it was a bad idea but I couldn't have known it was going to cause such a breakdown. 

Then, a few weeks later, it happened again after a short errand in the afternoon. Again, it was a very hot day, but I thought I had done everything necessary to pace myself and stay cool. So, I didn't see a problem with running a few errands in a row. By the time I got the second store, I felt a spell coming on. It started as agitation, fatigue and lightheadedness, all of which are so common that I didn't even know something was wrong right away. I sat inside in the air conditioning to rest but it was too late. It quickly turned into a full blown episode- just like the first one-with weakness, nausea, exhaustion, heaviness, panic and extreme thirst. I took a xanax for the panic but it was too late.  I still had to ride out the worst of the panic attack in the stall of the women's restroom, sobbing, shaking, and hyperventilating. After about 20 minutes, and a lot of cold water, I felt better and was actually able to do a little shopping. It wasn't as bad as the first spell but it wasn't good either. Since then I have many similar but less severe spells. But still, I couldn't make sense of some of it. I couldn't understand why I felt so nauseous; it didn't seem related to the rest of it. I also didn't know exactly what the common thread was so I didn't know when it was going to happen or how to stop it. I thought it was just exhaustion or a result of treatment wiping me out. I had been more aggressive with antibiotics, getting up to 400mg of Doxycycline and 250mg of Flagyl everyday. These were the highest doses I'd taken and they were hitting me pretty hard.

It was not until I happened upon some articles on heat intolerance that I finally figured out what was happening. I thought about each of the "spells" and realized that the common thread was heat. I read that many people suffering from later stages of Lyme Disease have a very difficult time with heat. In MS, heat can exacerbate a patient's symptoms and leave them exhausted, weak, and incapacitated. Heat can speed up the metabolism, along with everything else, and raise the body's core temperature too much. Many patients find that once they cool back down the symptoms get better or go away entirely. There is even a product called a cool vest designed to keep your core body temperature down so you can go about your day even when it's hot.

Check out these designed specifically for people with MS:

http://www.coolvest.com/RPCM_Cooling_Vest/Therapy.aspx

So, I started to think about my experiences. I remembered how hot it was at dinner that day, how running just one errand in the afternoon could knock me out. Then I thought about showering in the afternoon and how it was always so hard to cool back down. I also remembered how sometimes I felt like I was going to pass out at work, always in the afternoons. Finally, I started putting everything together, remembering how quickly and easily just a little exposure to heat has been knocking me out lately. It has become pretty debilitating. I have all but given up on functioning in the afternoons. But now that I understand it better, so I can at least anticipate problems and try to adapt to it. Finally, the nausea and panic make a little more sense. The higher doses of antibiotics were causing constant nausea so I think the heat just kicked that into overdrive. The panic attacks make sense too since heat can cause an increase in metabolic rate. So, I am going to test this theory and probably make some more changes. From what I can tell so far, I can recover from a little bit of heat exposure if I am careful to cool myself down quickly. For example, I took a shower in the afternoon yesterday but I made sure to pull the AC down, leave the door open and immediately lie down in front of a fan for a while after. Once I cooled back down, I was able to get up and enjoy relative comfort. I think some of the spells were simply too enormous to bounce back from that quickly. These left me wiped out of the rest of the day. But, I think if I'm really careful, I'll be able to avoid them or at least keep them from getting that bad. At the very least, I better understand what's happening. It's so much worse not to know what's going on or how to anticipate problems. The part I don't understand all that well is why it's been so much worse lately. I'm going to check with my doctor and see if he has any ideas. In the meantime, I'm going to do some more research and try to come up with ways to get through this god forsaken summer in Florida. I have already had to come up with so many little tricks to make leaving the house manageable. The thought of adding anymore is daunting. Oh well, here we go.