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Low blood volume "attacks"

Discussion in 'Problems Standing: Orthostatic Intolerance; POTS' started by curecfs, May 23, 2011.

  1. curecfs

    curecfs

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    Florida
    Lately I've had 2 episodes (1 coming out of now) where I guess my blood volume becomes too low and I become extremely weak (even more than "normal"), dehydrated, my blood pressure goes down to around 95/60 and my heart starts feeling like it's pounding in my chest. It has been scaring my Mom, afraid she is going to find me unconscious. Once I start loading up on water and salt for a few days it goes away, however, I have a real problem remembering to drink a certain amount every day. My thirst mechanism is screwed up because of medications...so my mouth is always dry, so I can't tell that way. Getting more tired than normal doesn't set off any alarm bells in my head because I just attribute it to the normal CFS.

    Anyone have any tips to help remember? In some ways I wish they made a monitor like for blood glucose that would tell dehydration/volume levels.

    Thanks.
  2. kurt

    kurt Senior Member

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    USA.Earth
    Sounds like the problem is that you are using a rehydration formula as an occasional treatment for symptoms, rather than as a regular part of your routine. When you start getting low blood volume symptoms, the problem is already advanced to the point that your heart is trying to compensate (heart rate always goes up with blood volume loss). If your blood volume issue is this serious, maybe you need to make your self-treatment a part of your regular daily routine, based on timing. For example, rehydrate before or after each meal, something like that.
  3. curecfs

    curecfs

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    Florida
    Yeah, I guess you're right. I have just always had a hard time drinking enough water. I just forget or don't think I need to and sometimes don't care to be honest. It's a full time job trying to just deal with this illness and I'm beyond the point where I even care to be honest. I guess that's the crux of the problem.
  4. penny

    penny Senior Member

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    I did the same thing with salt for a long time, relying on my craving for salt to guide me. After some pretty severe (for me) OI episodes I realized it wasn't working and I had to standardize it. Now I take salt tablets everyday, and of course eat as much salt as I want on top of that. It has improved my OI some - though it's no fix.

    As for water, I'm pretty much ALWAYS thirsty, but for a while I used a pitcher to gauge how much water I was drinking. Fill it up in the morning and put in arms reach of your bed, sofa or wherever your primary center of operations is. It also cuts down on getting up for more water.

    Occasionally I'd throw a little 'flavoring' in, a few slices of cucumber or apple, a few basil leaves, lemon - something mild but which made it just a little different.
  5. caledonia

    caledonia

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    Cincinnati, OH, USA
    Yes, drink sea salt dissolved in water through out the day. I have several supplements that I need to mix with water anyway, so I just mix them all together and drink them. That is timed with my meals and my other supplements. So all at the same time, and that reminds me.

    If I do any extra physical activity, especially if it's hot and I've been sweating (even a little), I'll do an extra glass of sea salt water.

    The trick of keep a pitcher of water by your couch or bed is a good one too. We used that for my elderly dad when he was getting dehydrated. We just made sure he emptied the pitcher by the end of the day, that way we knew he had enough water.
  6. curecfs

    curecfs

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    Thanks for the tips. I guess I feel like if I had hope of a partial recovery that maybe I'd take better care of myself and make sure I got enough water/salt, but I am falling into a mode of self-neglect because I have lost hope. It's been 18 years, I'm over it :(

    Sorry for the downer post.
  7. penny

    penny Senior Member

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    Southern California
    Curecfs, It might not help much but you're not alone. I sometimes get very angry that I'm spending so much of my non-existent energy trying to "be good", take care of myself, get better - and for such tiny changes. But it passes and I return to doggedly butting my head against the wall.

    Forgive me if this sounds silly or annoying, but don't beat yourself up if you do stop "taking care" for a bit. It really is our full time job and everyone needs a vacation sometimes. Taking a break when you need it isn't the same thing as giving up.
  8. Hope123

    Hope123 Senior Member

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    Don't lose hope! There's promising research on the horizon.....remember the darkest hour is just before dawn!

    http://www.youtube.com/watch?v=29GD-4VkGB0&feature=related

    On the salt and water side, I have the same issues. Salt tablets are good; if you want a bit of flavor, get regular V-8 vegetable juice or an equivalent -- one glass has 700+mg of salt. Some suggest aiming for 2-4 grams of salt a day for OI but check with your doc that your blood pressure/ kidneys can stand it. Keep a 2-L water bottle by your bed/ desk and drink it throughout the day with the salt tabs. Keep a calendar, mark off each day you do this and reward yourself at the end of 10 days, 20 days, etc. Don't beat yourself up if you're not "good enough" at this -- everyday is a new chance to succeed.

    Also, if you haven't read it, check out Peter Rowe's talk:

    http://www.cfids.org/webinar/series2010-past.asp

    There are meds to help with OI and other non-med options.
  9. curecfs

    curecfs

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    Thank you I will Hope. I am waiting for my Nutrigenomics test...prob 2 more weeks there, then I will know better which way to proceed in my next plan of attack. I guess I'm just sick of fighting, ya know?

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