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Orthostatic Intolerance in PwME (POTS?/NMH?)

Discussion in 'Cardiovascular and Respiratory' started by It's M.E. Linda, Jan 18, 2018.

  1. It's M.E. Linda

    It's M.E. Linda Established Member (Voting Rights)

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    From the Stakeholders meeting of NICE:-

    So, my experience from 2017.

    I asked my GP to refer me for a tilt table test as I have had varying symptoms when standing, climbing stairs, any uphill walk (not exactly hills, you understand, but we do live on a slope and I do walk a slow dog and me 'around the block' 3/4 times a week). The symptoms have varied from almost fainting to needing to sit to rising temperature, racing heart, wobbling.

    I saw the Consultant, had the tilt table and a follow up review. Despite the letter saying I "was well on leaving", my 86 yo mother had to escort me out to father's car. I had been unable to speak to her for 5-10 mins when out from the tilt table test & still could not speak properly/word find for at least an hour afterwards. I had many symptoms whilst on the table (see letter in file) and yet Consultant found 'dysautonomia is not the cause of her symptoms'.

    Partner and Dr were both surprised at my reaction to the news (cried) when I had had the good news that my heart is fit and well .

    Another thing to put on my 'to do' list - persevere with investigations.
     

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  2. Mattie

    Mattie Established Member (Voting Rights)

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    As I understand it many people with ME also have a confirmed POTS diagnosis.

    When I got very sick in 01-2016 the first specialist I saw was a professor in cardiology because I had measured POTS myself. He is a POTS specialist and one of the few ME specialists in the Netherlands.

    My own measurements were:
    Supine: 60 BPM -> stand up: 120-130 BPM. Every single time. Took measurements for a week, many times a day.

    POTS was confirmed with Tilt Table Test. Not NMH.

    I have never ever crashed so hard than the next day after the TTT. It wiped me out for months!

    My cardiologist confirmed I definitely have POTS and he was the first to diagnose me with ME. Later confirmed by 2 other doctors.

    I would not recommend tilt table test for people with ME. As apparently it can cause severe PEM. Poor man's Tilt Table Test may be enough to diagnose POTS.

     
    Last edited: Jan 18, 2018
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  3. ahimsa

    ahimsa Senior Member (Voting Rights)

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    Hi @It's M.E. Linda

    I don't know whether this is helpful but here's my experience. I have had two tilt table tests, one in 1995 and the other in 2003.

    Both tests found Neurally Mediated Hypotension (NMH). With just the tilt (no isoproterenol) my blood pressure plummeted to something unmeasurable and I passed out. On the 1995 tilt test this happened somewhere around 20 minutes (I'd have to look up the exact number).

    On the 2003 tilt test, which was done as part of LTD (long term disability) insurance testing, I passed out somewhere shortly after 30 minutes.

    Anyway, if my second test had been stopped at 20 minutes, before I passed out, then I might have had a result similar to yours.

    This makes me wonder whether you might have gotten a different result if your test had lasted another 10-20 minutes? Years ago (it might have changed) the Johns Hopkins recommendation was that the tilt should last for 45 minutes.

    Also, I thought that these days there were additional measurements that doctors could do to detect problems without the patient having to pass out to show NMH? So I'm kind of wondering at the idea that your test was deemed 100% normal even though you were having all sorts of symptoms? That sounds a bit strange to me.

    I agree with @Mattie that the tilt table test can cause PEM. For me the crash was a couple of weeks, not months, but this varies from person to person. Anyone considering a tilt table test should keep that in mind. I would not have done the second test if it were not part of disability insurance testing.

    My understanding is that POTS can often be diagnosed with a standing test but that NMH is harder, if not impossible, to diagnose just by standing.

    Also, the Batement Horne Center is doing research on the "NASA 10 minute lean test" which might be a good option for some (less expensive than a tilt table test):

    https://batemanhornecenter.org/learned-from-the-nasa-10-minute-lean-test/

    https://batemanhornecenter.org/wp-content/uploads/2016/09/NASA-Lean-Test-Instructions.pdf

    There are so many new things that have been learned since my tilt tests so please take this all with a grain of salt. (pun intended ... where's the salt shaker emoji? :) )
     
  4. MErmaid

    MErmaid Senior Member (Voting Rights)

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    I can’t offer you a “salt shaker” emoji, but this emoji is tagged as “Dizzy”

    :emoji_dizzy:

    And this emoji is tagged as “levitate”

    :emoji_levitate:

    So maybe, the best description for OI/NMH/POTS is :emoji_dizzy: :emoji_levitate:
     
    Rabbit, It's M.E. Linda and ahimsa like this.
  5. It's M.E. Linda

    It's M.E. Linda Established Member (Voting Rights)

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    Thank you for telling me of your experiences.

    Exactly.

    I requested the stop because I was in so much discomfort. Talk about wanting to be in control, my body was telling me to stop.

    I realise now that I shouldn't have even wriggled my toes (which I had started to do, right near the start of the test). That's what I do (and move foot to foot) if I have to stand in any queue or waiting.

    So annoying because now I have a 'no problem' result on my record.

    I did give the Consultant a copy of my diary entry regarding the tilt test - very embarrassing & emotional, written up the following day, shows PEM suffered - which should be on the hospital file - or perhaps filed in the bin?!
     
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  6. Inara

    Inara Senior Member (Voting Rights)

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    For those who have that problem - do you have suggestions for treatment? It seems I have developped POTS (or whatever name there is for > 30bpm after standing a few minutes) although on good days I don't seem to have the problem. I hope.
     

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