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Heart4paws

Heat intolerance and POTS

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I am very new to all of this so bear with me. I was diagnosed with POTS in 2011 after giving birth to a son. Up til now beta blockers and lots of hydrating have kept it pretty well under control. Now it seems as if I am having more symptoms in the past couple of years that are worsening. Symptoms such as extreme heat intolerance and having lots and lots of PVC's.  I am feeling so bad all the time and this is keeping me from doing things with my kids most all the time. Doctors in my area seem to know little about POTS and anything I've heard or learned about dysautonomia disorders is from research I have done myself. Any advice or pointing in the right direction would be much appreciated

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It will definitely be worth it to find a doctor that knows more about POTS. I think most of us find relief through hydration, compression wear, diet (high salt). For me, I've also responded well to fludrocortisone and salt pills, which are monitored by my doctors and dosing changed up depending on my symptoms and BP. The Dysautonomia International website has a list of doctors and I found luck in finding a Physical Therapist who was knowledgable about POTS. Vestibular Certified PT's typically have good education about POTS more than others. Even with doctors and a PT who knew about POTS, it still took me almost a year to get a diagnosis and good treatment after my last flare up.... I think others have very similar experiences. I think it's pretty normal for symptoms to change over time but that doesn't mean you can't treat them. Hang in there!

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I struggle with heat intolerance so bad i ride in 30 degree weather with no heat on. I want to turn it on but when I do, I get Ill and adrenaline overload. Feel like throwing up. 

 

I have central heating and air, I also have a window unit. I run the window unit year around. When the heat comes on, the heat makes me so sick. The air conditioner makes it manageable. I'm pretty new to all of this so I don't know what helps heat intolerance if anything. Not looking forward to Summer.

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Dear @Heart4paws - unfortunately POTS symptoms tend to wax and wane and even can change or worsen over time. I have had POTS for 10 years and have been on meds since the beginning. I have found that my symptoms get worse over time and I need to increase or change/ add meds. I am currently on 6 daily meds for my POTS symptoms and this combination has developed over years. I see an autonomic specialist in another state and need to drive 8 hours to see him. He changes my meds whenever the symptoms get worse again. 

There is a list of physicians that treat dysautonomia patients under the physician section on this site. Most states do not have any specialists, so most patients have to travel quite a bit, but it is worth it. Unfortunately many of these specialists have waiting lists so I would check who would be an acceptable distance for you and ask your PCP to refer you as soon as possible ( if your insurance requires a referral ). 

Regarding the PVC's - my specialist told me that PVC's are a sign that the ANS is unbalanced - he called it my built-in alarm system. Although they are harmless I do take them serious since they frequently appear when I am experiencing a flare of POTS ( can be triggered by illness, over-doing things, stress, heat etc …) In the past increasing or changing beta blockers has helped at times. Compression stockings also can be helpful. 

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My body doesn't handle heat + humidity well.  Heat by itself is okay, but not if it is also humid.  It triggers all my POTS symptoms, and the only thing I can do about it is to minimize exposure by wearing a hat and a cooling scarf, and staying in the shade or air conditioning as much as possible.  Bright sunlight also triggers something, too.   

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I used to love the sun before POTS but have also been very intolerant to heat since. Luckily I live in Scotland where it isn't usually too bad. My little spray bottles of water that I keep in the fridge, cold pack for my head & fan are lifesavers. Funnily enough my hands and feet remain freezing cold, so on the hottest day so far I had my feet inside my electric foot warmer at the same time as dousing my face with water!

For me I believe hypovolaemia is the culprit as we need an adequate blood volume in order to thermoregulate - hence uprights increase their blood volume naturally in the first few days when they travel to a hot climate, & athletes also seek to derive extra benefits from training in heat. 

B xxx

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I use a cooling vest in the heat of Summer and keep the extra ice packs in the freezer so I have a constant supply. 

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I'll find out about heat soon enough. Summer is about upon us and it's my first summer with this stuff. I hate the heat as it is. 

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I appreciate all the input. I am not looking forward to a hot, humid summer either (south carolina).  Went to see my cardiologist this morning (actually I could only get in with the physician assistant) and for now she is putting a heart monitor on me for 48 hours to observe the pvc's and she is also increasing the dosage of my beta blocker. Hopefully this helps. I also ordered some of the banana bag drink that I saw on this site. It's a solution that supposedly helps with hydration. Anyone else tried this?

 

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