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What Makes POTS Flare?

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Chronic Fatigue Syndrome
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Posted 1/21/2019 9:10 PM (GMT 0)
Hi, folks,

I'm curious what makes people's POTS flare up. I have been having the worst POTS day I have experienced, and I cannot figure out what I might have done differently that could have triggered it. I would appreciate hearing what causes especially bad POTS days or episodes, in your experience. Also any quick fixes, of course, if anyone has those. smile

And please ease my mind a bit - the danger of POTS is just the troublesome fainting and disabling nature of it, right? I don't need to be worried about something more serious happening to me, or about the POTS causing damage?

For what it's worth, I have underlying infections that I am treating, and when those are in decent shape I don't have POTS symptoms, and therefore am not on any medications specifically for POTS.

Thanks!

Sara (Lyme, POTS, ME, HPA axis dysfunction....)
Posted 1/22/2019 11:56 AM (GMT 0)
Hi...Sorry you are feeling so bad, but what the heck is POTS? I have never heard of it. Feel better!
Posted 1/22/2019 1:41 PM (GMT 0)
Sara, there really is not a lot of treatment for POTS. Drs recommend that patients go slower when rising from a bed or a seated position. Another thing they suggest is increasing the salt intake to get the blood vessels to open up. Worse case scenario is a low dose blood pressure medicine to open the blood vessels.

Try increasing your salt. I have a friend with POTS that fainted a lot. Once she increased her salt intake it made a lot of difference. Good luck.
Posted 1/22/2019 11:51 PM (GMT 0)
Thanks, Susie. Since POTS (postural orthostatic tachycardia syndrome) occurs so often in CFS/ME patients, I was hoping folks on this forum would have some ideas for me. For those who aren't familiar with POTS, it is an often-disabling neurological condition that causes your heart rate to rise a great deal when you are upright, and often blood pressure drops when you are upright (when it should be rising), and it causes fainting, fatigue, headache, nausea, face and hand tingling, and blood pooling in legs.

I'm curious if anyone has found success treating it from the neurological angle, like with nervous system re-training programs or supplements/meds designed for the nervous system.

And I hope to hear about people's experiences with other treatments - exercise, physical therapy, diet, nutrients, herbs, adrenal balancing, underlying infections, etc.

Thank you!
Sara (Lyme, ME, POTS, HPA axis dysfunction....)
Posted 2/3/2019 12:55 AM (GMT 0)
Hi and nice to meet you saraeli!
My daughter has had tachycardia for many years and she's only in her mid 30's. From what I've been reading stress seems to be your worst enemy for bringing on attacks. I found a site from the Cleveland Clinic that has a lot of good information. This link will take you toward the end where they talk about how to cope living with POTS. I'd suggest backing up and starting from the beginning. Lots of good information there.
https://my.clevelandclinic.org/health/diseases/16560-postural-orthostatic-tachycardia-syndrome-pots/living-with

Another good site, IMHO, is
https://rarediseases.info.nih.gov/diseases/9597/postural-orthostatic-tachycardia-syndrome
Here's a list from their site:

Emotions can have a significant influence on your daily life and health. Identifying them can be useful if you are talking with a counselor or POTS support group. Think if the following emotions are present in your thoughts:

FRUSTRATION: distress and annoyance, especially in the inability to change or achieve something
ANGER: feeling of displeasure and annoyance
GRIEF: deep sorrow over a loss
DISAPPOINTMENT: sadness and displeasure over failure or lack of fulfillment of one’s hopes, expectations, and goals
GUILT and SHAME: painful feeling of humiliation or distress from perceiving you have done something wrong
EMBARRASSMENT: feeling of shame and awkwardness
CATASTROPHIZE: a perception or feeling that something is worse than it really is
HOPE: Feeling of an expectation and desire for a positive thing to happen
TRUST: belief in the reliability, truth, accuracy, and ability of something, concept, or a person

I hope something on these pages give you some information but most of all Hope.

Warmly,
Chutz
Posted 5/16/2019 2:17 PM (GMT 0)
Hello!

I also have POTS and Lyme and I flare up from caffeine, heat, dehydration, gluten/dairy, exercise, standing or sitting for too long, stress, and pain. Have you read the book titled "The Dysautonomia Project"? It provides a detailed (but understandable) guide to living with POTS for both patients and physicians. I have learned a lot from this book and they state that 2 of the worst enemies of POTS are pain and stress.
I personally take salt tablets, drink tons of water, wear compression socks, and stay away from caffeine/dairy/gluten. Caffeine makes the biggest difference of those 3. I have also elevated the head of my bed 6 inches while the feet of the bed stay on the ground (recommended by several doctors of mine). I currently take Northera for my blood pressure/heart rate and have tried other meds in the past for POTS. I hope some of this information helps!! POTS can affect so much more than just your heart rate and blood pressure. For example your autonomic nervous system is also responsible for pupil dilation, digestion, urination/bowel, etc., so it could cause many different symptoms.
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