Saturday, February 26, 2011

Heat Intolerance

Credit: zenner
As February comes to its end I am beginning to worry about this upcoming Spring and Summer.  There is one symptom of POTS I have not been able to address no matter what I try and that is the severe heat intolerance.  Is this a major problem for any of you?   For me the heat is my main trigger for the tachycardia, shortness of breath and at times even lightheadedness.  Although, I don't have to be standing up for these symptoms to occur if it is hot enough.   Even in the winter if a room or store is warm enough, I become symptomatic too so it is not just an issue with the outdoor temperature.   This is one of the reasons why I like to wear layers in the winter, so I can start peeling clothes off if needed, especially in retail stores.  I've become overheated while walking around a mall and it can get very scary.  One of the worst things is the changing rooms.  Why do those always seem to be so much hotter than the rest of the store?

Every summer I seem to get worse and worse or perhaps my tolerance of the symptoms is just getting lower!  We do not have central air conditioning in our house, so it is very miserable and it is not uncommon to have temperatures into the 90's.  However mid 80's with high humidity is the most common.  Over the past few years we bought a few window units which help, but it isn't the same as having an entire house fully air conditioned.   It's amazing to me how much of a difference my health is from the winter where I feel pretty decent most of the time to summer where I feel debilitated nearly every single day.  The fall and winter is my time to reflect on the things I had done during the summer to recover.  Even though some of the things I have done to help other health issues, absolutely NOTHING even touches the heat intolerance.  
What the heck is it about the heat that makes me feel so awful?  It is the vasodilation of the blood vessels or is it due to a true dysautonomia like decreased sweating?  That is something I have not been able to find much information on.  I never had the QSART or autonomic testing done because CC was not very cooperative with me and the hassle of simply getting the report from there discouraged me from going back.   That's for another post though.  Any way I do not know if I have a sweat impairment, but it is definitely possible.

One interesting thing I believe goes along with my heat intolerance is the fact my skin has difficulty in feeling warm temperatures.  What I mean by that is I can wash my hands under water that would burn the hell out of my husband or I can drink burning hot drinks that no one could even sip.  I also have a high pain tolerance, so even if I start to feel the "burn" it is already way too late... There has to be a correlation there.  It is like my body does not even sense I am feeling hot or getting hot until it is too late.   

By the time summer comes around I hope to have tried out a few more ideas and theories.  Maybe, just maybe one of them will finally be the answer to my problems.

Here are a link to an mitochondrial dysfunction site talking about heat intolerance.
Cool ideas for adults and kids with heat intolerance

6 comments:

  1. Hi,
    I know this is an old post but I was just recently diganosed with POTS and after a year of a lot of trial and error right now I'm manging things pretty well. I have a strict daily regimine that I follow without fail or deviation. As for the heat intolerance what I've found that works for me is drinking a 16.9oz plain flavored Vita Coconut water before going outside. It helps me to tolerate the heat a little better than drinking plain water or my daily Vitamin Water Zeros. Upon rising I also drink a warm 8oz cup of Pedialyte with the juice of one organic lemon and a tablespoon of raw organic honey. Heat intolerance was a big hurdle for me to overcome because all the doctors were attributing it to perimenopause and not POTS.

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    1. Hello Tonya. I recently was diagnosed with POTS, but have had symptoms for years. I would like to hear about what you are doing to manage your symptoms. If you'd like to chat, feel free to email me at agallant815@yahoo.com

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  2. I'm 23 with pots and have suffered with it since 5th grade. I'm so glad I'm not alone although I hate that you have to go through this too. I can't hang around the beach, take hot showers, or go outside for longer than 10 to 15 mins without barely being able to breathe, getting dizzy when I move and my heart racing, even with the metropolol ans felcanide acetate I take. I wish I knew how to fix it. It's miserable and being so young I feel like I miss out on so much. :(

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    1. Kirsty,

      I'm really sorry to hear that you are struggling so much. It's definitely a very difficult syndrome to live with, let alone find an effective treatment for. I really hope one day that doctors can figure out hoe to heal our autonomic nervous systems!! xo

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  3. I just found your blog while searching for reasons for a severe heat intolerance. Mine has gotten worse over the years, especially with each pregnancy (I've had four) to the point where it's debilitating. I also have a long list of other symptoms which point to a connective tissue disorder, but am still undiagnosed. Both of my sons have similar issues and my youngest son is medically complex with a feeding tube so we're trying to figure out his underlying diagnosis as well. I feel that solving the mystery for just one of us would really help figure out the others as well. All my life I've been told that it's all in my head, I'm just being a wimp, I'm doing it for attention, etc. I'm done. I KNOW there's something wrong with me and that it's not normal to feel like this and I will not stop until I find an answer, both for me and for my sons.

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  4. Hi,
    II realise this is quite an old post but I came across your blog and this post as I was looking for clearer explanations as to why I react so dramatically to heat, particularly when no one else seems to even notice seemingly benign things like air-conditioning temperature settings in hospitals, shops, malls. Even carpooling is a problem since many are not comfortable with the air-conditioning on full blast which is the only setting that works for me. It's frustrating not only because it limits my choice of activity but also because it's hard to explain without coming across as an overbearing drama queen.
    I was diagnosed with severe POTS when I was 15, now at 30 my symptoms and my heat intolerance seems to have worsened but my doctors never told me back then that the heat intolerance and POTS were connected, although I was aware that heat was definitely a trigger for me. It's only been about a month, a new doctor affirmatively made the connection and asked me to avoid the outdoors, or areas where I may get overheated.
    However, that's truly much easier said than done, living as I do, in southern India where daily summer temperatures hit 45-48°C and non- summer temperatures rarely dip below 33-35° (I use the term non- summer not at all in jest since it never feels like spring or autumn to me, let alone winter, and I haven't used blankets or winter wear in years).
    Avoiding heat then requires assiduously staying indoors all day, not driving because even with the AC on, the heat through the windows is enough to trigger my symptoms. Since y symptoms have worsened over the past year, I haven't worked at all. Being a lawyer, I can hardly expect courts or any firms to function after sundown to accommodate my seemingly absurd condition.
    And even big reputed firms in posh localities with an uber rich clientele view air-conditioning an unnecessary luxury unless clients themselves request it and even then certainly not all year round which is what I seem to need.
    I've tried everything including wearing my hair close cropped for a few years but even that caused problems with conservative colleagues and clients alike. So I've been under a self imposed unemployment for the past 15 months!
    Simple daily tasks like cooking are a problem too since our home isn't centrally air conditioned. I love to cook and bake but even that causes problems unless I'm prepared to pop back and forth between my hot kitchen and my air conditioned bedroom every fifteen minutes and cook only early in the mornings or late at night.
    I feel like some kind of sub- human, vampire hybrid!
    I have always felt like a bit of a freak because most Indians are pretty well adjusted to our extreme weather and it is reassuring to know there are others who experience similar daily hurdles. I hope to learn to cope better because I'm new medication now but without any hint of schadenfreude I am glad to have come across your blog and other readers comments. Your comment about mall changing rooms actually made me laugh because all my life I thought I was the only one who felt that way. So thank you for sharing your experience.

    Angelina

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