Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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2015 Heart Rhythm Society Expert Consensus Statement on the Diagnosis and Treatment of POTS

Discussion in 'Autonomic, Cardiovascular, and Respiratory' started by voner, May 20, 2015.

  1. voner

    voner Senior Member

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    Last edited: May 20, 2015
    Vasha likes this.
  2. halcyon

    halcyon Senior Member

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    I thought that SNRIs could be helpful for some?
     
  3. Sidereal

    Sidereal Senior Member

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    "best managed with a multidisciplinary approach" :vomit:
     
    Esther12 likes this.
  4. Sidereal

    Sidereal Senior Member

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    They seem more useful for NMH than POTS.
     
    halcyon likes this.
  5. Esther12

    Esther12 Senior Member

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    "might be best managed with a multidisciplinary approach"?

    Might not be?
     
  6. helperofearth123

    helperofearth123 Senior Member

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    I have mild POTS and am set to have a jugular stent put in soon. I'll show them this first, thanks for sharing.
     
  7. Sushi

    Sushi Moderation Resource Albuquerque

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    Strattera was extremely helpful for me but I have NMH, not POTS.

    Sushi
     
    Ruthie24 and halcyon like this.
  8. SOC

    SOC Senior Member

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    It does seem rather extreme for mild POTS. Have all the less-invasive techniques been tried and found unsuccessful? What led your docs to thinking a jugular stent was the best choice?
     
    Ruthie24 likes this.
  9. SDSue

    SDSue Southeast

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    Does anyone know what the Class and Level designations mean?

    For so many “experts”, and so much research in the past several years, I would have expected more. This is just the same old stuff prepackaged.
     
    Ruthie24 likes this.
  10. SDSue

    SDSue Southeast

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    Never mind. The designations are explained on page 2. :D
     
  11. SOC

    SOC Senior Member

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    Yeah, well, it has Level E evidence justifying it, meaning "We've got no evidence but this is what we do, so it must be right." :rolleyes:
     
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  12. helperofearth123

    helperofearth123 Senior Member

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    Well I have moderate/severe ME/CFS as well, mild POTS has been found to be a part of what is going on with me. I had a couple of balloons inflated (venoplasty) in my jugular and the first time it hardly did anything but after the second one I felt quite a lot better, so I'm optimistic. Still, I'll keep this in mind. Maybe my POTS is mild enough for it not to be a major factor, though of course its all part of the same illness.
     
    SOC likes this.
  13. SDSue

    SDSue Southeast

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    I’m curious as to how you ended up with a venoplasty. If you don’t mind, I have a couple of questions.

    What testing led your doctor to doing a venoplasty?
    Was your diagnosis something other than / in addition to POTS, like CCSVI?
    If you got little to no effect from the venoplasty the first time, why did you repeat the procedure?

    Thanks so much.
     
  14. jimells

    jimells Senior Member

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    Isn't this the new codeword for psychobabble?
     
    Never Give Up and Valentijn like this.
  15. Sidereal

    Sidereal Senior Member

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    Yes, it's a codeword for getting psychologists, social workers etc. involved.
     
    angee111, Never Give Up, SOC and 2 others like this.
  16. SDSue

    SDSue Southeast

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    Would social workers be a bad thing? Or would they actually help us get the services we desperately need, such as home health? I don’t know enough about the field to make an educated comment.

    @Gingergrrl might be able to weigh in on this one?
     
  17. Sidereal

    Sidereal Senior Member

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    In normal circumstances I would agree, but in anything to do with ME the role of allied health professions like psychology, social work, occupational therapy, physiotherapy (physical therapy) is often quite abusive and aimed at getting the patient to increase their activity levels.

    Check out the article. There's a whole subsection about the alleged role of anxiety and somatosensory amplification in perpetuating POTS symptoms.
     
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  18. SDSue

    SDSue Southeast

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    I saw that. I kinda hate this whole article. I find it demeaning and superficial. Likely the participants got an all-expense paid vacation, attended a few coffee klatches, and paid someone to ghost write the thing.

    I’m disappointed to see Vanderbilt, Cleveland Clinic, and Mayo Rochester involved. Shame on them. The others don’t surprise me.
     
    Ruthie24, beaker, Sushi and 3 others like this.
  19. Sidereal

    Sidereal Senior Member

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    Total shit, I agree.
     
  20. jimells

    jimells Senior Member

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    In past decades, yes, social workers did help folks find the necessities of life. Before we met, my former partner was a county social worker who went out into the community to look for people to help. There now seems to be very little of that kind of activity. Social service agencies are not interested in helping people. If there is no one to bill, it's, "Sorry, we're not going to help you. Call someone else."

    At the local welfare office the social workers are mostly data entry clerks. They seem to know nothing beyond what the computer tells them. Even in my tiny community they've never heard of any other agency or group or individuals that are helping people.

    I did have a case manager for a while. To me, she was a classic social worker who tried to figure out what clients needed and how best to help them. But as soon as Medicaid quit paying the agency, she was gone. The agency did absolutely nothing to help me find another way to get the same services - 'cause there was no one to bill.

    I've never had a social worker in the context of a healthcare provider. Maybe they are actually useful for something besides telling people "I can't help you".

    Instead of a system organized around how best to help people, it is organized around "for what services can we bill Medicaid and Medicare?"
     
    Valentijn likes this.

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