Julie Rehmeyer's 'Through the Shadowlands'
Writer Never Give Up talks about Julie Rehmeyer's new book "Through the Shadowlands: A Science Writer's Odyssey into an Illness Science Doesn't Understand" and shares an interview with Julie ...
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MUST see Videos - Duke University POTS Symposium 2015

Discussion in 'Problems Standing: Orthostatic Intolerance; POTS' started by lnester7, May 8, 2015.

  1. lnester7

    lnester7 Seven

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    merylg, Hutan, Wayne and 5 others like this.
  2. SDSue

    SDSue Southeast

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    Dr. Camille Frazier-Mills: Non-pharmalogical &Pharmacological Management of POTS

    at 22:25:
    "Patients feel so much better after getting their saline", she says with a smile and a giggle.
    "Life is so great, and it lasts for a few days, right?" and then laughs with someone off camera.

    She goes on to say that saline is good only in crises to keep people out of the hospital, and for those with GI troubles that prevent them from using frontline meds.

    I personally don't find this funny; not when she's training other doctors on POTS management. I'm pretty sure she doesn't mean harm, as she has made a life out of treating dysautonomia, but the message she's sending is terrible - use saline only as a last resort and laugh when patients want more of it after they experience remarkable improvements from their saline IV.

    I guarantee you if she had POTS as serious as some of us, she'd quickly assess the risks/benefits of saline and start dragging around an IV pole - especially if she stood to lose what so many of us have already lost - homes, careers, savings, friendships, hobbies, etc.

    PS: Thanks so much for posting, @lnester7 - contrary to what it sounds like from my above post, the videos are actually quite informative.
     
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  3. lnester7

    lnester7 Seven

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    @SDSue I see that attitude a lot from Doctors about IVs, What I was told is that a lot of OI patients end up with Collapsed veins and then you end up with more trouble. So they only use it when absolutley necesary but they should explain the reaseaning so others udnertand why not all the time.
     
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  4. SDSue

    SDSue Southeast

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    You are quite right. I watched my mother go thru all this and then dialysis, so I know well the hazards of failed ports, collapsed veins, sepsis, etc. I spent many nights in the hospital with her on IV antibiotics. But…. she made it to all her children's weddings, she met all her grand babies, she even traveled some to visit family. Was it worth it? I think so.

    The questions regarding IV saline remain:
    How often is too often?
    What event is special enough to warrant IV intervention?
    Who gets to determine risk vs benefit?
     
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  5. Sushi

    Sushi Moderation Resource Albuquerque

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    Your daughter's wedding????:D
     
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  6. SDSue

    SDSue Southeast

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    You read my mind. ;)
     
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  7. SOC

    SOC Senior Member

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    Oh, I didn't think of that! I wonder if I can do that, too? :D
     
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  8. Sushi

    Sushi Moderation Resource Albuquerque

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    Sounds like a plan! ;)
     
  9. Hutan

    Hutan Senior Member

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    @Inester7
    These videos are really helpful, thanks.

    The sleep one was intriguing. The sample size was tiny (7 people from memory). The findings included:
    1. that people with POTS were repeatedly near-waking;
    2. heart rate variability was high - probably related to the frequent near-waking
    3. instead of the deep sleep occurring more at the beginning of the sleep, it was occurring more at the end
    4. there were leg movements during REM sleep when typically people don't move

    So the upshot was that people weren't getting a good healing rest and it would be hard to wake up in the morning out of that deep sleep.

    Have others heard of more robust studies that have found similarly altered sleep architecture?
     
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  10. Hutan

    Hutan Senior Member

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    hmm...

    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4083342/
    Sleep Disturbances and Autonomic Dysfunction in Patients with Postural Orthostatic Tachycardia Syndrome
    Julia Mallien,1 Stefan Isenmann,1 Anne Mrazek,1 and Carl-Albrecht Haensch2,*


    38 POTS patients.
    Really not much difference between arousals (waking and near-waking) or much else during the sleep itself between the POTS patients and controls. Didn't sound like the other study at all from my quick read. The authors seemed to make much of differences in reported day time sleepiness.

    'In our study, PSG parameters showed no differences in sleep efficiency or frequency of arousals between both groups.'

    'However, sleep architecture showed a significantly higher proportion of sleep stage 2 in patients with PoTS. This phenomenon could also be detected in patients with insomnia and points out the evidence of objective primary sleep disorders in PoTS patients. Slow wave sleep <<that is deep sleep>> percentage was slightly higher in control subjects (39.25 vs. 41.30%; n.s.), but not statistically significant. There was no significant difference in the proportion of REM sleep between the two groups. However, four of the PoTS patients did not even reach REM sleep stage throughout the night.'

    Oh, for a good quality study that replicates the results of another study on anything to do with ME/CFS or POTS.
     
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