Sunday, July 3, 2011

Heat Intolerance Is My Top POTS Symptom

There was an interesting post on 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


claire said...

Hey there! Great post. I am still in search of causes for my own symptoms, as I'm new to dysautonomic symptoms for the last 7 mos. or so. How would you determine if someone had POTS or whether they had adrenal fatigue? You seem so refreshingly knowledgable about the subject, and if I don't find soon what I have, my dr. will put me on florinef, and I'm kinda scared about the whole medicine route. Any info about POTS vs. adrenal fatigue would be soooo appreciated! Best, M.

emaserang76 said...

I have the same thing. Sucks so badly.