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Increasing orthostatic stress impairs neurocognitive functioning in CFS with POTS

Discussion in 'Latest ME/CFS Research' started by RustyJ, Sep 17, 2011.

  1. RustyJ

    RustyJ Contaminated Cell Line 'RustyJ'

    Noosaville, Aust

    In my case, once I reach a point where I am affected by orthostatic stress, I find relief, but do not go back to normal when I lie down - it generally takes hours. This is an important distinction which is not investigated. The point being that in some instances of affected blood flow to the brain ie low blood pressure, when the patient lies down, they immediately go back to being normal.
  2. Dolphin

    Dolphin Senior Member

    Interesting observation.

    Two quick ones from me:
    - when my heart beat gets above a certain point/I get "excited"/"agitated", it can be hard to get right back to a fully relaxed state.

    - with exercise with the condition, even if one lies down afterwards, we don't recover as quickly as other people; perhaps the effect is similar with standing.
  3. bertiedog

    bertiedog Senior Member

    Yes this is my experience too, once my heart starts getting too fast then the energy just runs away from my legs. Heat and doing too much when I am not feeling very good will also do this. This is the reason I take at least 20 mg Propananol each day, it is very helpful.

    One other thing that seems to help a bit is to eat some carbs and protein when my heart starts going too fast.

  4. ahimsa

    ahimsa Senior Member

    Oregon, USA
    True, but one line did make me laugh

    Thanks for posting this, RustyJ! I am glad they have done the science to demonstrate something that has been experienced by so many patients. Plus, it's interesting that the test did not show a correlation between cognitive dysfunction and decreased cerebral blood flow velocity (CBFV). (Is decreased CBFV the same as hypoperfusion?)

    But I guess I'm a bit punchy tonight because the following line in this abstract, although perfectly true, made me laugh out loud:

    Wow, is this the understatement of the year, or what? I think most of us who live with this illness already know this.

    Yeah, "orthostatic stress", or what we patients would likely call "standing" (and some other activities such as sitting up straight for too long), does indeed "impair [my] neurocognitive abilities." In fact, if you ask me a question while I'm standing up you'll mostly likely get one of two responses:

    1) I'll get that "deer in the headlights" look while I try desperately to figure out what you are asking me. This happens routinely if a store employee innocently comes up to ask me, "May I help you?" Luckily, I can generally figure out what to do (sit down on my folding chair) even if I can't figure out what to say. Fortunately, my husband has learned to say, "Please sit down, I need to ask you something." (He's so patient and amazing!)

    2) If it's a good day then I can manage to say, "Wait, let me sit down so I can think." Yes, I use those exact words. ;)

    So, yeah, I've figured out this connection between standing and lack of thinking. :rolleyes: But scientific confirmation is always a good thing!

    PS. My diagnosis is actually a type of OI called NMH (Neurally Mediated Hypotension), not POTS. However, after 21 years I think I may have both NMH and POTS. My heart rate when standing is a lot higher than it used to be. I didn't realize it until last year when I took a couple weeks of BP readings while standing, first thing in the morning, before any medications or food. I did it to see what my BP was doing but of course the monitor also shows heart rate. I was surprised to see my heart rate readings were so high (e.g., anywhere from 115 to 150 BPM after standing for about a minute, just long enough for the BP monitor to get a reading).
  5. Dolphin

    Dolphin Senior Member

    I just read the full text.
    I don't have a good knowledge of biology but was able to understand this pretty thoroughly, I think (i.e. it's not too difficult, although I have learned a bit from reading in the field).
    Most of the data are in the figures/graphs, which is also spelled out quite well in the text if anybody has difficulty understanding such figures/graphs (however, figures/graphs don't deal with interaction effects). (As well as being spelled out in the results section, the results are also repeated in the discussion section which has individual sections and probably covers all that most people might need).

    Apart from one mention that deconditioning might be one reason for higher heart rates at baseline, there was no other discussion of that and no mention at all of graded exercise therapy, CBT, etc i.e. I'd feel reasonably safer given this to doctors than some papers.

    The fairly consistent pattern of abnormalities was nice.

    All in all, I enjoyed reading it.
  6. Dolphin

    Dolphin Senior Member

    No major evidence of NMH/similar in this group

    No major evidence of NMH/similar in this group (i.e. similar to controls)

  7. xchocoholic

    xchocoholic Senior Member

    I noticed that when my pots hits, 10 minutes after standing, that many times I also have a petite mal and sob. I'm not sure
    how many of us do that but this means we won't recover right away. It typically takes me an hour
    to recover to feeling "normal", but I've yet to figure out why sometimes it takes longer.

    When I came down with h pylori and parasites at the same time no less, my oi was so bad I could
    barely stand up at all .. now that i've treated for these I'm back to my previous "not so healthy" level
    Tc .. X

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