Anyone with Postural Orthostatic Tachycardia syndrome?

General
1

was wondering if there is some common genetics?

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2

I have it. Tons of salt. sugar and Effer- C electrolyte powder. Homeage pediolite. Gets ugly if I forget these things. Get the Effer C at Walmart. Cheaper at Costco, BJs.

3

I have it! Secondary/comorbid with onset of ME/CFS

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4

Yes! I have a prolactinoma, which causes neurogenic Diabetes Insipidus, which causes dehydration/hypovolemia, which causes the POTS. Also am hyperadrenergic, with likely pheochomocytoma. You’d think endocrinologists would wanna do something right? Wrong. Not even Mayo Rochester. In the US, endo=thyroid and type 2 diabetes. Endocrinologists here are strictly “in-the-box” thinkers. I also have Ehlers-Danlos and compound acute porphyria. I urge you to discover the underlying cause of your POTS because although it CAN be caused by some genetic conditions, ME/CFS for me was just the tip of the iceberg. Look for ACTIVE diseases, not just genes. POTS is more of a symptom. I got my first mediport implanted six yrs ago and became wheelchair bound soon after. Then I got sicker. Keep searching.

5

I also have hyperadrenergic POTS with mast cell activation syndrome. Not sure how or if they’re related, but there seems to be some evidence of that.

It took me years to discover that the reason I couldn’t stand up for long without getting sick was because my blood pressure, which was perfect at 110/70 when sitting, would start shooting up as soon as I became upright. I finally asked my GP to do orthostatic testing, which explained a lot.

I think my mother also had it. She told me that after she had gall bladder surgery in her 40s she never quite recovered her health, and she had sick spells off and on until she passed away in her 80s. Mine seemed to be triggered after being dx with h-pylori and pancreatitis.

6

Yes I have it. I have it with classic Chronic fatigue syndrome. I’ve been bedridden since December 2016. I’m finally getting answers from a specialist, in case anyone’s in the same boat: Suspected autoimmune influence (being tested), mast cell activation syndrome, and confirmed small fiber neuropathy (especially in my feet/legs). I have many neurotransmitter/psychiatric/autism mutations. I have mild anxiety and severe ADHD;

I tested for quite a few of the ‘42 SNPS by the CDC chronic fatigue syndrome research group’ template, most are neurotransmitter or cortisol related. I have 25/38 SNPs mutated. The most double mutated (red) in that template we’re TPH2 genes, associated with ADHD, Panic, schizophrenia, bipolar, migraine without aura. Idk by what mechanism those SNPS effect the immune system, leading to mast cell/autoimmunity/chronic infections, but they do I guess. The specialist I saw even said, she sees a high number of people with ADHD having dysautonomia or mast cell problems when I mentioned it.

7

I had a version of POTs that started when I was 15 in high school. The official diagnosis I have is “Autonomic Dysfunction” but the symptoms I experience are very similar to those with POTS