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can OI come and go or is it a constant

Discussion in 'Problems Standing: Orthostatic Intolerance; POTS' started by Aerose91, Mar 3, 2014.

  1. Aerose91

    Aerose91 Senior Member

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    I havent had OI that i noticed anyway for my year into this but since my recent PEM setback the OI has come on HARD. In a matter of 2 days i now can not stand for more than 30 seconds and if i do it takes about an hour for me to recover from it upon lying down.

    I have been in a drastic downhill slide for about a month since this last period of overexertion and its showing no signs of stopping even though im on bed rest 24/7. I just can not believe how quickly im deteriorating, i am now in need of a wheelchair immediatly.

    Is this something that can fluctiate with time or is it something i need to prepare to dig my heals in and learn a new way of life?
  2. SOC

    SOC Moderator and Senior Member

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    It could fluctuate if the main reason for your OI is low blood volume. In that case, if your electrolyte and amount of fluid intake is variable (which it is for healthy people) your blood volume could be varying too much (which doesn't happen in healthy people). That would make your OI symptoms worse some time than others.

    If you haven't already asked your ME/CFS specialist about OI treatment, I'd do so ASAP.
  3. Aerose91

    Aerose91 Senior Member

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    I am pretty consistent with drinking a lot of salted water and take a salted electrolyte supplement from dr endlander. However i was doing all these well before i got this.
    At the rate im declining i definitely need to go see him but i cant even sit up, i have no way to get out of the house, i dont know how ill be able to get to him.
  4. SOC

    SOC Moderator and Senior Member

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    Try calling his office and telling them everything you've told us here. He might be able to prescribe something without seeing you, assuming you've seen him in the past year. If Dr E has to see you, do you have family/friends/neighbors who will take you to the doc just this once?

    Drinking lots of salted water was not enough for my OI/low blood volume problem. I have to take a fairly large dose of florinef AND drink electrolyte water at the right times of day in order to stay upright most of the day.
    ahimsa likes this.
  5. alex3619

    alex3619 Senior Member

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    My OI varies with how exhausted I am, including how much sleep I have been getting. I would not call it variable however, it fluctuates but it does so predictably, at least for me.

    During a severe down turn in health it would be wise to watch electrolytes carefully, as @SOC suggested. In the short term that is about it unless you have a doctor who will prescribe a treatment for OI.

    OI, for me, can be severe for days or weeks at a time, then mild, then not noticeable if I manage my health. However many have the problem constantly. It varies patient by patient, and I think it also needs to be recognized that OI is a syndrome, with different subtypes(POTS, NMH), and probably different causes and contributing factors even within those subtypes.
    xchocoholic, ahimsa and SOC like this.
  6. xchocoholic

    xchocoholic Senior Member

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    Mine varies too but it's always there. Taking anything that makes me drowsy makes it worse.

    And once when I caught h pylori and parasites at the same time, agh! , I couldn't stand up for more than a minute or so without feeling faint. I don't know if 1 or both nailed me.

    Luckily my doctor didn't attribute my increase symptoms to my oi and ran tests to look for the cause.

    If you can't get in to see a doctor asap, you may want to try treating bad bacteria and / or parasites. I'd try pepto bismol for h pylori and papaya (seeds?- i can't remember so you'll need to google this) + honey for parasites to start. There are different more elaborate otc treatments available but these appear to work for some. And they're easily accessible.

    Of course seeing a doctor for testing is best but sometimes it's just not an option.

    Tc ... x
  7. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    @Aerose91

    OI varies a great deal for me--mostly in relationship to my level of fatigue but also, after I have "primed" my leg muscles with a pilates class (done lying down with machines), I won't have OI for a couple of days. I believe this is because my leg muscles are working to return blood to the upper body.

    Usually I need to wear compression knee socks, but then some days, like today, I don't. Not sure why except I am doing a gut treatment and the gut controls so many things--neurotransmitters etc.

    Sushi
    ahimsa likes this.
  8. Aerose91

    Aerose91 Senior Member

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    I can definitely say that this is the most tired/exhausted ive been since the onset of this. Im wondering if i may have damaged my liver or pancreas because the hypoglycaemia is out of control and wont get any better (ive checked my adrenals too their fine) and because of this i sleep maybe 1 to 2 hours/night. However, when im not sleeping im in full bore fight or flight mode so i am just exerting energy left and right. i am sure this is what caused my OI as this has been going on for over a month

    SOC, yes i have my mother around who would take me to dr E but i still dont think i could make it. I am about 4 hours away so i take the train in and subways/cabs but merely standing for 30 sec is too much for me and walking even 1 flight of stairs is major overexertion. i do need to contact him though, maybe he'll be ok with a phone call.
  9. SOC

    SOC Moderator and Senior Member

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    Yeah, phone call sounds best.

    As sick as you are, you shouldn't be trying to train/subway if you have to stand. You need to be in a wheelchair if you have to make the trip. That's the way lots of us travel when we have to. Lots of people who can't stand get to the doctor. ;) You just need to find out what they do and try it.
  10. Aerose91

    Aerose91 Senior Member

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    Yeah thats certainly not a good option, but neither is driving into NYC. Hopefully i can stick to the phone call for now.
  11. SOC

    SOC Moderator and Senior Member

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    Neither is staying seriously ill because you won't use a wheelchair or don't want to have somebody drive you into NYC. :)
    Sometimes ya gotta do what ya gotta do. It's that or sit home whining and doing nothing, which it sounds like you definitely don't want to do. So what other choice do you have than to suck it up and do what it takes? The phone call is certainly a smart, proactive first step. Hopefully it will save you the trip into NYC and the whole travel thing will be moot.
  12. Aerose91

    Aerose91 Senior Member

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    Yes i totally agree, im a very proactive person so i want options not problems. Im going to try and set something up with dr e tomorrow.
    SOC likes this.
  13. Valentijn

    Valentijn Activity Level: 3

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    This has happened to me several times. First time it lasted 3 weeks, second time was 1 week, and the current episode is looking like 2 weeks. Basically I do better if I don't fight it and if I lay down when I get the first little sign that I need to.

    When it goes away, I'm back to "normal", but well-rested with a little extra strength/energy stored up.

    My pulse pressure is consitently low during these episodes, and the current one shows my oxygen saturation staying too low most of the time. Even though 96%-99% is normal, I feel crappy if it goes under 98%. Typically my heart rate would raise when my oxygen drops that much, but that doesn't seem to happen as effectively during these episodes. Hence I end up with low pulse pressure and low oxygen saturation and normal heart rate.
    Last edited: Mar 4, 2014
    xchocoholic and ahimsa like this.
  14. Aerose91

    Aerose91 Senior Member

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    @Valentijn

    Thank you for that it gives me some hope. Like i said i havent been resting at all lately and that brought thus on so im hoping if i can actually get some sleep it might start to get better.
    I am also laying down as much as possible and trying not to let it get bad. You said something interesting though- i also usually get POTS when i dont sleep but this time im not and am getting severe OI instead. When i stand my heart rate doesnt increase or anything, i wonder what the cause of this is.
    Nonetheless, i sure hope this will pass within a few weeks. Thank you.
    Valentijn likes this.
  15. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    Are you including potassium salt in your salt water? If you get your sodium/potassium ratio messed up that can cause problems.
  16. Aerose91

    Aerose91 Senior Member

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    I have an electrolyte mix from Dr Enlander that i use but i have to add more salt than that because of my weak adrenals. I dont produce enough aldesterone which balances sodium so if i take too much potassium i will crash my adrenals pretty bad.
  17. SOC

    SOC Moderator and Senior Member

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    Do you take florinef or some other mineralcorticoid as a treatment for hypoaldosteronism? Sometimes just adding salt to your diet just isn't enough to compensate.
    ahimsa likes this.
  18. Aerose91

    Aerose91 Senior Member

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    I dont because i am really trying not to supplement with hormone replacement unless totally necessary. As long as im careful with my electrolyte balance and salt intake though it seems to be pretty well under control
  19. SOC

    SOC Moderator and Senior Member

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    Err.... The symptoms you're saying are so difficult are very likely directly related to your hypoaldosteronism. That doesn't sound like pretty well under control to me. If you want your OI to improve, you will probably have to take medication. Or you could just decide to live peacefully with the symptoms.
    lnester7 and alex3619 like this.

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