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Orthostatic intolerance: raise bed head or foot at night?

Discussion in 'Problems Standing: Orthostatic Intolerance; POTS' started by Sasha, Mar 6, 2010.

  1. Sasha

    Sasha Fine, thank you

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    I've been mugging up on orthostatic intolerance, which I'm going to be tested for this week. Some advice says that you should raise the foot of your bed, e.g. Dr Stewart writing about POTS: "Raising the foot of the bed at night can increase blood volume." Other advice says that you should raise the head of your bed, e.g. Dr Rowe says: "Another time-honored recommendation is to elevate the head of the bed slightly by 10-15 degrees, so that the head is higher than the feet, a position that appears to help the body retain fluid at night rather than lose fluid into the urine."

    Does anybody have any idea which it should be? The most common recommendation I've seen is to raise the bed head, though it seems counter-intuitive. I mentioned it to my (non-specialist) doctor and he didn't know what the physiological mechanism would be for it to work.

    A secondary question: I can't tilt my whole bed because of how it is constructed so I'm getting a wedge that goes under the mattress that will tilt the upper (or lower) half of the mattress and therefore my body at 15 degrees. Does anyone know whether that's likely to be sufficient? According to my geometry calculations, raising the whole bed to a 15 degree tilt would require you to raise a six-foot bed by one and half feet, which seems a lot!
  2. potsrecovery

    potsrecovery Guest

    Building Blood Volume for Orthostatic Intolerance or POTS

    As a sufferer of POTS and OI symptoms for 20+ years you get to understand what helps and what doesn't. Here is my advice on building blood volume based on my experience and on what POTS/OI specialists such as Dr. B. Levine and Dr. Schondorf have recommended:
    • Elevate the head of the bed 6-8"
    • Don't lie flat as this conditions your body to do the least work (makes symptoms worse)
    • Drink 3 litres of water daily
    • Consume >8,000mg salt per day under doctor's supervision
    • Avoid diuretics in your diet like caffeine, alcohol
    I have also found that eating very nutritiously, avoiding sugary foods and goods high on the glycemic index helps. You can see more info on my blog at potsrecovery.com

    Hope this helps!
  3. xchocoholic

    xchocoholic Senior Member

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    WOW ... I almost completely disagree with this ... Obviously, there's no one size fits all when it comes to OI.

    I feel best when I lay totally flat without raising either my feet or my head. In fact, if I don't keep my head flat, I won't recover as quickly from an OI episode. And I won't be able to think clearly ...

    > 8000 mg of salt !!! That sounds dangerous to me. The RDA is 2400 - 3000 mg daily. I try to stick with that but will eat a small handful of salt
    (1/4) if I need a boost and didn't just eat or drink something salty.

    I've found that caffeine will help me with my OI at times. Dr. Myhill, I think, was the one who recommended this.

    We're all different so it's a matter of seeing what works for you. tc ... Marcia

    ps .. my text editor is messing up so sorry if this has errors ...
  4. Sasha

    Sasha Fine, thank you

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    Thanks, both - it looks like some trial and error might be in order! Although if your body needs to recondition to being used to sleeping on the slant then maybe you feel worse before you feel better?

    That's interesting on salt - the RDA is indeed in that range but I've seen some OI advice from specialists on the net as recommending as high as 12g. I already take the RDA and will only increase under my doctor's supervision as I agree it can be dangerous (but I think we're all agreed on that!).

    I've also seen "avoid diuretics" but also "drink caffeine". Aagh!

    Thank you both for your comments - a good reminder of how complex this all is and why it's such a good idea to have this messageboard!
  5. ahimsa

    ahimsa Senior Member

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    Things that help me with OI

    I tried raising the head of the bed and I wasn't able to sleep that way. I felt like I was a Minbari or something (obscure Bablyon 5 reference, sorry).

    But I do a lot of the other recommendations. I take 5-6 salt tablets daily (BioSalt brand, so that's about 900-1080 mg sodium on top of what I get via food) and drink 2.5 to 3 liters of water daily. I also take a time released prescription potassium supplement (K-Dur or something like that).

    As for drugs, I take both midodrine and fludrocortisone (very small amount, 1/2 tablet).

    I also find that walking helps as long as it is done in short bursts with lots of breaks to sit down. I avoid standing. When I'm at home resting, I lay back in the recliner with my feet elevated. This is the very best position for me when I'm really crashed. This mostly flat position, but with my head slightly higher than my feet, is even better than lying flat. But I can't simulate this position in a bed just by raising the head of of a normal, flat bed. I'd need something like a hospital bed that bends at the hip and I refuse to get something like that (never mind that I'm sure they are very expensive) until I'm a lot more sick than I am now. I'm already so far removed from healthy/normal that I resist more reminders of what I've lost.

    Another thing that helps is to stay as cool as possible. If my hands are cold it usually means that I'm feeling pretty good. When my hands/feet get warm and filled with blood then things are usually bad. So, I dress in layers that can be easily removed, stay in the air conditioning when it's warm (anything above about 74 deg F), and drink iced drinks if I get overheated. Caffeine actually does help me (iced coffee, yum!) and I've not found a diuretic effect from it.

    It is annoying to be so "high maintenance" but learning these few tips helps me to be a bit more functional and reduces the symptoms a little bit.

    The main thing for me is to pace myself and not push. I make sure to schedule rest times.

    This is a bit of a late response, Sasha, but I hope some of these tips are helpful. And I'd be curious to find out whether the wedge that raises the upper half of your body works to improve your sleep.
    (or reduce OI symptoms?)

    Best of luck to you!

    Marjorie
  6. herbqueen

    herbqueen

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    See Inclined Bed therapy/Andrew fletcher on google and also thisisms.com ccsvsi (new vascular theory treatment for MS treating blood collapsed veins flowing to brain_ treatment section/inclined bed therapy thread
  7. spindrift

    spindrift Plays With Voodoo Dollies

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    Ahisma, those are wonderful insights to OI. I can totally relate to feeling better when hands are cold.

    Would like to ad it helps me going from lying to doing something sitting for a while before doing
    things that require being up right for a longer period. Although if I were my g-suit there is no need
    to do an adjustment like that.
  8. ahimsa

    ahimsa Senior Member

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    Re: cold hands

    spindrift, I often joke that cold hands for me is just like when you notice the dog's nose is cold and wet - it's a GOOD sign, not a bad one. :D

    The other thing I do (saw someone mention this in a list on another forum message, forgot which thread) is to keep my legs tucked up under me when I sit in a chair. Second best, if I can't take off my shoes and sit cross legged, is to find something to prop my feet on or to push against. Letting my feet dangle is the worst thing for me (e.g., bar stool with no cross bar to rest your feet).

    Anyway, enough rambling for now. By the way, I love the Schrdinger's cat joke!

    Marjorie
  9. herbqueen

    herbqueen

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    Check out Andrew Fletcher and hish Inclined Bed Therapy theory- google and youtube-- you can go to thisisms.com and read thread under CCSVI treatment --IBT thread.
  10. potsrecovery

    potsrecovery Guest

    I think whatever treatment we choose in our quest to recover/feel better from POTS or OI should be evidence-based where possible. There is so much speculation on what works and what doesn't that it makes it very difficult for a patient to decide...particularly when their own doctors engage in speculation. Thankfully there seem to be more and more clinical studies being done to help us out. Regarding the raising the foot or head of bed- I have found one clinical study proving the effects of raising the head of the bed. The report is entitled "Physiological effects of sleeping with the head of the bed elevated 18 in. in young healthy volunteers"

    As for raising the foot of the bed - that has actually been used to induce orthostatic intolerance in patients for studies out of Texas (I will look for this clinical report). My speculation: It appears that raising the feet above the head is an emergency measure to be taken when someone has fainted but not to be used long term as it can can exacerbate OI.
  11. potsrecovery

    potsrecovery Guest

    OK here are a couple of clinical studies regarding inducing othostatic intolerance in study patients through -6 degree negative tilt (head down, feet up) bed rest.

    1. Orthostatic intolerance in 6 degrees head-down tilt and lower body negative pressure loading.

    2. Cardiac Atrophy After Bed-Rest Deconditioning

    What these studies show is after patients lie head down for a given period you can give them orthostatic intolerance and that the stroke volume of the heart upon standing is reduced after tilt-down rest. Not good! I would suggest that anyone currently sleeping with head down may be worsening their symptoms.
  12. garcia

    garcia Aristocrat Extraordinaire

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    Logically then doing the reverse of the above i.e. sleeping inclinded on a +6 degree positive tilt (head up, feet down) would reverse orthostatic intolerance. Sleeping in this way is known as "Inclined bed therapy" and has been used successfully in a diverse range of conditions including MS.

    I've been doing Inclined Bed Therapy for the last few months, and it is one of the best treatments I ever did for my ME/CFS. I never had overt orthostatic intolerance, but I've found e.g. that my quality of sleep is better and that my mornings are much, much improved. Mornings used to be the worst time of day for me as I would wake up toxic/hung-over. Now they are my best and most productive time. All from raising the head of my bed 6 inches.
  13. Garcia, would you write up your experiences using I.B.T. for CFS? This would help a lot and if permitted would include it in the I.B.T. Forum so that others can learn about this alternative therapy for ms.

    My site: http://www.andrewkflethcer.com
  14. garcia

    garcia Aristocrat Extraordinaire

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    Yes no problem Andrew! For those that don't know Andrew is the discoverer/originator of Inclined Bed Therapy. It is a privilege to have you here Andrew!

    I was thinking of writing up my experiences of IBT in CFS, so I shall do so over the next few days and post it as a blog post on this forum.
  15. Athene

    Athene Never give up

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    I definitly want to try this for my OI. Thanks for this thread all of you.

    Do you absolutely have to put something under the legs of the bed, or is it sufficient to put a pillow or whatever under the head end of the mattress to make it slope upwards?
  16. Sasha

    Sasha Fine, thank you

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    Hi Athene - we had a thread on the practicalities of bed-tilting a while back - here - that I think will help you.
  17. Sasha

    Sasha Fine, thank you

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    This sounds interesting, garcia, I'm looking forward to reading it - I was thinking that this deserved a new thread of its own!
  18. Advocate

    Advocate Senior Member

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    Dr. Cheney used to recommend use of a bounceback chair. I don't know if he still recommends it. The astronauts, who had temporary OI from space journeys, used to use bounceback chairs when they returned to Earth. I don't know if they still do so.

    Advocate
  19. Sasha

    Sasha Fine, thank you

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    What's a bounceback chair, Advocate? It sounds fun, whatever it is!
  20. Sasha

    Sasha Fine, thank you

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    Doh! You provided a weblink - sorry I didn't see it, for some weird reason it was green on my screen instead of the usual blue.

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