Heat Intolerance: It's Too Darn Hot!

I made a video talking about some of my struggles with it.


Admittedly I was doing a lot better in this video I made 8 days ago. Things got bad really quickly for me.

These Symptoms Are the Reason I Made This Blog

This video contains the very reasons why I started this blog back in 2007. Here I am in 2012 and still suffering from the same issues. Everything I've done in the past 5 years hasn't helped me much. haha!

Heat intolerance and rapid heart rate upon standing. This is my life in the summer.

Heat Intolerance Is My Top POTS Symptom

There was an interesting post on dinet.org the other day. A poster asked us to list our top 5 POTS symptoms that cause problems for us on a daily basis. I was certain everyone would have tachycardia on their list, but that was not the case. How can you have POTS (postural orthostatic tachycardia syndrome) and NOT have tachycardia or heart symptoms on your top 5 list... Am I missing something here?

If you were to list your top 5 symptoms, what would they be? Fatigue? Pain? Gastrointestinal issues? Let me know what all of you are going through. I am very curious to see how different yet how similar we are too.

My top 5 symptoms are as followed:

• Heat intolerance
• tachycardia with shortness of breath (when standing of course)
  
• anxiety, "crazy" wired feelings
• shakiness/tremors
• exercise intolerance

I do not know why the heat is such a problem for me, but cooler weather or air conditioning makes all the difference. In the winter I feel pretty normal and most of the other symptoms listed go away. I still have tachycardia but the heart rates are not nearly as high and the anxiety is never as bad either. Unfortunately exercising is bad because that makes your body temperature increase, so it goes back to the heat intolerance.

Now many people would insist that I have adrenal fatigue and need to go on "adrenal support". No you are wrong. I will continue to repeat this as many times as I need to until I am blue in the face.

POTS is not adrenal fatigue. POTS is not adrenal fatigue. POTS is not adrenal fatigue. POTS is not adrenal fatigue. POTS is not adrenal fatigue.

/Rant on

Do some POTS patients have symptoms that mimic those with adrenal issues? Absolutely, but it does not mean we all have adrenal problems and need hydrocortisone, florinef or "adrenal support". It is simply a THEORY that has been repeated so many times, that people have started to believe it as truth. Those who perpetuate the THEORY usually have never ever had POTS, yet they speak about it as if they are an authoritative source of information. Ugh! :( Believe me when I say it does not go away with some salt, florinef, and hydrocortisone. If it did I would not be here anymore writing on my blog.

/Rant off

Heat Intolerance is a major problem for me in the summer.

Now that it is summer, I really have to be careful outside or even in the house. I get heat exhaustion so very easily compared to most normal people. Today I believe I woke up with the beginning stages of heat exhaustion simply because we did not have the A/C turned on in our bedroom last night. I woke up with a mild fever, headache and nausea. This is one of the reasons why I do not pay any attention to basal temperatures or even daytime temperatures. For me it varies according to the room temperature. Have any of you ever noticed an increase in temps during the summer? If so you likely have body temperature regulation issues too.

When I wake up in this crisis state, it is very difficult to pull myself out of it without intervening with ways to cool my body down as quickly as possible. Cold baths, ice cold water and air conditioning is the only thing that helps. Once my body finally cools down I am good. I feel completely normal and can go about my day. I know that sounds really weird and perhaps I am an usual case, but I always tell people I really do just have POTS. I do not have chronic fatigue syndrome or hypothyroid. If I fixed my POTS, I'd be nearly 100% better.

This summer has been better than previous years, so I am thankful for that. However I still have a long way to go until I will consider myself recovered or cured.

Update 8AM July 4: Things did not go as well as I had originally thought when I made this post. I continued down the heat exhaustion path for most of the night. At one point I was shaking, had goosebumps, throbbing headache and felt terrible. My temperature was running 99.6. I got an ice cold bath, drank lots of ice water and I still was having trouble getting my temperature down. Finally now after many hours after becoming increasingly worried, I got my temperature down to the low 99's, then high 98's and now it is about 98.4. I still have an awful throbbing headache and that likely will not go away until I sleep for the day. I hope I staved off an ER trip. That would be 2 holidays where I made an appearance. Let's hope all of this corrects itself today. Yes we are running the AC tonight too!

Here's a few other posts I've made on this subject.
2012- Heat Intolerance: It's Too Darn Hot!
2011- Getting Through the Heat Intolerance

Getting Through the Heat Intolerance

Heat intolerance can make summer miserable.

As it starts to warm up I have been becoming increasingly concerned with how I will make it through yet another spring and summer.  We do not have central air conditioning in our house, so it can be quite unbearable at times.  Where I live it is not uncommon to see 90 degree days with very high humidity, so fans just do not cut it.  We put in window air conditioners, but they only do so much.  It is not quite like having an entire house with air conditioning.

With severe heat intolerance, I am constantly in the beginning stages of heat exhaustion.  With POTS this is just something you have to deal with I guess.  Not many people have been successful in treating their heat intolerance.  I am hoping chelation will help me, but I do not expect to see any results for at least 6 months to a year.  If I were doing IV's then I would likely see improvements much quicker, but for now I am sticking with oral DMPS.  I am still a little nervous about IVs and I don't know of any doctor who does them in this area. 

The beginning symptoms of heat intolerance are all too common for the POTS patient.  Here's a list of symptoms from the website medicinenet.com.  It is linked above if you want to read more:

* heavy sweating (not the case for a lot of POTsy-we do not sweat enough)
* paleness
* muscle cramps
* tiredness
* weakness
* dizziness
* headache
* nausea or vomiting
* fainting

The skin may be cool and moist. The victim's pulse rate will be fast and weak, and breathing will be fast and shallow.

At some time or another I've had all of these symptoms while bathing or simply sitting in my house doing nothing.  I do not sweat enough when I am hot.  I think that might be part of the issue.  However  I do sweat profusely if I am having a norepinephrine response to stress of some type or become extremely tachycardic upon standing.  Apparently these are controlled by two different parts of the CNS, so that actually make sense.  

I guess walking around in my bikini, keeping cold wash clothes on my head and getting cold baths is really all I can do.  The summer time is hell for me and I can not looking forward to it at all.

For those of you who got to the end of this article and think all of my symptoms sound "adrenal", think again.  I am so sick and tired of hearing about how I need adrenal support.  I am on adrenal "support" and it does nothing for POTS, nor heat intolerance, nor exercise intolerance, not the lightheadedness etc.  Sorry but I am just sick and tired of hearing this.  STTM and the adrenal yahoo group have both polluted all health forums, so everyone considers themselves experts on adrenals.  No you are not! Wake up, there are other body systems out there other than adrenals and hydrocortisone is not something you should be messing with unless you have real adrenal failure.  Period.

I made the mistake and listened to all of these armchair forum doctors for years.  No more!  /Rant off

Things I Do To Stay Cool

It's pretty hot here in western PA today. Right now it says it's 81 with 66% humidity. The humidity has finally kicked in this year, which makes getting around pretty darn frustrating. Since I have medical conditions that are worsened by the heat, I've learned ways to cope and keep cool.

1) Water, water
I always try to have some sort of drink on hand. The problem with just drinking water with POTS or adrenal insufficiency, is that you'll actually mess up your electrolytes even more. With my water, I also take Thermotabs which is a sodium chloride tablet. This helps me to get fluids without bringing my sodium levels down too low.

2) Wear as little clothing as possible
I know this sounds like dumb tip, but it does help to strip down to bare minimums. During the summer, I'm usually wearing my bikini top and shorts.

3) Wet towels
If you are really really hot and can't seem to cool down, then placing a cold wet towel/rag on the back of your neck really works wonders. You'll have to get new cold water often though!

4) Cooling Vests
I do not own one of these, but I've heard they are absolutely amazing. There are several websites that sell vests which are meant to hold ice packs. The ice packs last a few hours and can be refrozen over and over again. Some people on dinet.org say they make the summer much more enjoyable for them as they can do things they wouldn't normally be able to do.

5) Invest in a fan/air conditioner
We do not have whole house air conditioning, which is probably a little unbelievable for some of you. Our house is old and does not have the duct work available, so we are forced to use the window units. It's nice to keep at least 1 room in the house as the "sanctuary room" that I can run to when I am getting really overheated. If humidity isn't a problem where you live, then a fan or swampcooler may work really well for you too.

6) Dip in a pool or lake
If you own a pool or have a neighbor with a pool, this is always a really good option. Getting into a cool, swimming pool can feel absolutely amazing when it's hot outside. If you aren't lucky enough to have a pool nearby, then the local lake will work too! I'm not much of a "beach" person, but this year I think I might try out the swimming area at a lake near my house. It's better than suffering in the heat.

Heat Intolerance : I'm screwed!

I was really hoping that the beta blocker would help with the heat intolerance, but I'm not that lucky. I figured this would happen, so I started taking 1/4 tab of florinef 4 days ago. I haven't noticed any differences yet, but I'm not looking forward to the weight gain THAT med will cause me. Ugh...I've gained like 10 pounds just in time for summer. It's not supposed to be like that.

I was going to lay out today because it's 80 here, but I can't. There's no way my heart can handle it at all. I didn't have my watch on me, but I bet I was hitting 150 BPM.

Some days I just want to start throwing stuff, punching holes in walls and screaming at the top of my lungs. As you can guess, today is one of those days.