Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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Why would POTS return after an absence of over a year?

Discussion in 'Autonomic, Cardiovascular, and Respiratory' started by charlie1, May 27, 2015.

  1. charlie1

    charlie1 Senior Member

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    Does anyone have any ideas on why POTS would be helped with medication (Mestinon) to the point I could discontinue the med for about 12-18 months with no tachycardia but then have POTS return? During the time I was off the Mestinon I was still dealing with the dysautonomia symptoms, especially PEM but had no more tachy issues.

    Then about 1 month ago, POTS returned but unfortunately Mestinon isn't helping with the symptoms this time. If I knew why I got the POTS the first time (3 yrs ago when my illness/CFS first appeared), I think it might help me know why it's returned but I don't.

    Thanks.
     
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  2. Gingergrrl

    Gingergrrl Senior Member

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    Have no answers but bumping this back up so more people will see it.
     
    charlie1 likes this.
  3. Kyla

    Kyla ᴀɴɴɪᴇ ɢꜱᴀᴍᴩᴇʟ

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    Sorry to hear your POTS is acting up :(

    I don't have an explanation for you, but I can tell you mine also comes and goes in "flares".
    I have never been able to figure out a trigger, and it doesn't seem to be specifically a PEM thing for me - The symptoms worsen like everything else with too much activity, but the flare ups come independently of that.
     
    charlie1 likes this.
  4. Research 1st

    Research 1st Severe ME, POTS & MCAS.

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    Charlie1 If I remember correctly, Mestinon is used in myasthenia gravies to aid muscle power. If this had a similar effect in yourself, you'd perhaps have a stronger cardiac pump, better circulation (possibly?) better blood flow to the brain (clutching at straws here) and less symptoms,so feel 'better'. But....that doesn't explain the neurological dysfunction and symptoms though, so I'd have a guess at you're inadvertently affecting an undiagnosed autoimmune process in your central nervous system, by taking Mestinon. I say undiagnosed, as the latest research on POTS, suggests it (or subsets) is an autoimmune disease.

    http://www.dysautonomiainternational.org/blog/wordpress/new-evidence-of-autoimmunity-in-pots/
    http://jaha.ahajournals.org/content/3/1/e000755.full

    To my knowledge, there are no commercial assays for autoimmune POTS (Other than one from the Mayo clinic, a autonomic panel), yet that doesn't cover the latest research findings. So if you wanted to do a little science study of your own, you could try and measure your levels of cholinesterase in your blood. But, I guess, these are not reflective of brain levels, which would at the least require a spinal tap (lumbar puncture) or a specialist brain scan.

    This study might have some connection perhaps? I know it's 'CFS', but organic CFS (potentially ME), is often linked with POTS.

    Source:
    Acetylcholine Mediated Vasodilatation in the Microcirculation of Patients with Chronic Fatigue Syndrome.
    http://www.ncbi.nlm.nih.gov/pubmed/15041034

    I but that in red text, as Mestinon, blocks cholinesterase.

    So maybe, by taking the drug, you're inadvertently messing with this process, or the vagus nerve maybe? Lots of autonomic symptoms are caused by vagus nerve dysfunction, including in POTS and probably ME.

    I hope you get your health back soon, any improvement is good news and loss of function is of course infuriating. Maybe you could try some other medications or investigate why Mestinon helped you so much, with some form of endocrine testing such as blood volume assessment (very hard to get), or more 'simple' tests such as seeing if your Renin/Aldosterone ratio is haywire. It usually is in POTS patients. Also if possible I would measure your Vasopressin (ADH), especially if you pee too much and/or if it's clear colour. If so, I'd tell your doctor and ask for a water loading test, water deprivation test to make sure your POTS diagnosis is accurate.

    Have you tried Midodrine? If you aren't overweight or don't run a higher BP, although it has lots of side effects and needs to be tested in a Hospital first, Midodrine can helps some people with POTS gain significant function back, by constricting blood vessels, and thus keep more blood from pooling in your feet. If you haven't tried this drug, and your doctor says you meet the criteria, you may want to consider this medication too. In layman's terms, it's Parkinson's drug, so 'safe', but you'd need to be given it by a specialist or a cardiologist.

    Good luck and take care.
     
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  5. charlie1

    charlie1 Senior Member

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    It was an endocrinologist who originally suspected POTS and referred me to a neurology clinic where it was officially dx through ttt'ing. The endo did all the above tests (normal results) except the blood volume assessment. I know the POTS has returned without needing another official dx b/c I'm experiencing the same symptoms of angina, SOB, tachy when sitting upright, standing or walking that I had during the first time period but didn't have when my POTS disappeared for some time.

    Yes, I tried Midodrine twice and both times it caused my pulse to fall in the low 30's which lasted a scary 6-8? hrs. And the kicker is, it did nothing to raise my blood pressure which was it was prescribed for!

    Thank-you for those links. I look forward to reading them to see if there might be an autoimmune connection!
     
    Rlman likes this.

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