Poll: Has raising the head of your bed helped your OI/POTS/NHM?

How has raising your bed head affected your orthostatic intolerance?


  • Total voters
    32

Sasha

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The lifestyle advice for orthostatic intolerance includes raising the head of your bed so that the whole bed is on a tilt. The idea is to both recondition your body and keep fluid in your blood rather than it moving to your bladder and dehydrating you during the night.

Advice varies considerably on how much to raise your bedhead. European Society of Neurology Federation guidelines say 8" to 12". A study on improving orthostatic function in healthy people used 18" and their measures had improved when they were assessed at the end of a week. The benefits are generally supposed to take several days to show up.

Info on how to raise your bed in this thread.

If you have both OI and CFS, please take the poll!

[Administrators, can it be made sticky, please? Also, have I messed up so that individual names will be shown in terms of how people vote? Also, I seem somehow not to have this introductory text above the poll, ermm...]
 
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potsrecovery

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Hi there - I have a blog going where I am documenting my progress with Dr. Levine's Exercise protocol, a treatment for POTS (http://potsrecovery.com). As part of the protocol Dr. Levine recommends raising the head of the bed 7-8". I am definitely feeling better and I am mid-way through the protocol. However, I don't know what effect the bed raising has had versus the other parts of the treatment such as exercise, fluid intake and sodium consumption.
 

Sasha

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Hi there - I have a blog going where I am documenting my progress with Dr. Levine's Exercise protocol, a treatment for POTS (http://potsrecovery.com). As part of the protocol Dr. Levine recommends raising the head of the bed 7-8". I am definitely feeling better and I am mid-way through the protocol. However, I don't know what effect the bed raising has had versus the other parts of the treatment such as exercise, fluid intake and sodium consumption.
Hi potsrecovery - I wrote about your really excellent blog on this thread here about Dr Levine's protocol. I have just been diagnosed with OI but also have CFS and think his protocol would kill me! On that thread we're discussing whether there are any benefits that those of us with CFS could take from his protocol, given that our capacity for aerobic exercise seems to be damaged.

Staci Stevens has an exercise programme especially for people with CFS (though not mentioning OI) and there seems to be some overlap but it's not a clear picture. I think there's potential for using Dr Levine's approach of building core and large muscle strength and using supine/recumbent exercise but staying in the anaerobic zone (the latter being Staci's approach, I think).

I don't understand this stuff very well and am hoping others will jump in! Perhaps you might have some comments for that thread.

I'm really pleased to hear that you're feeling better even though you're only halfway through. It's great that you're blogging about it for everyone else's benefit, too.

Everyone else - I really recommend potsrecovery's blog, it's an excellent read!
 

HopingSince88

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I have been sleeping with my upper torso elevated for decades, due to reflux. However, when I do a good job with eating or if I have taken Prilosec early in the day in order to stave off the reflux, I will sleep almost flat (on my side using just one pillow). I find that when I am flat, I actually sleep better and awaken feeling a little better. Whether I sleep flat or on an incline, it does not seem to affect OI.
 

Sasha

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I have been sleeping with my upper torso elevated for decades, due to reflux. However, when I do a good job with eating or if I have taken Prilosec early in the day in order to stave off the reflux, I will sleep almost flat (on my side using just one pillow). I find that when I am flat, I actually sleep better and awaken feeling a little better. Whether I sleep flat or on an incline, it does not seem to affect OI.
Hi Hoping - in the main "bed wedge" thread on this, I quoted Dr Benjamine Levine (the cardiologist running potsrecovery's study programme) who told her that it's tilting the whole bed that's important for OI, not just the upper torso. I wonder if it would make an difference to your OI if you tilted the whole bed. I don't know whether Dr Levine meant "no point tilting a bit of yourself" or "not as good tilting a bit of yourself as it would be the whole of yourself". As usual, so many questions, so few anwers!

Also on the bed wedge thread, we're discussing the possibility that some people might have hypotension while sleeping and so not do well with tilting their bed.

Before I read that, I bought a short wedge and slept on it for a night (it just elevated my body from my lower torso upwards) and found it quite uncomfortable. I have to sleep on my side due to a calf muscle problem so maybe being weirdly bent sideways was a problem!
 

ramakentesh

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Raising the foot of the bed is done to either increase absolute blood volume and to 'retrain' the autonomic system to handle orthostatic stresses. However some of the mechanisms that are now being implicated in POTS and Vandebilt and the Centre for Hypotension clearly wont respond to bed elevation. In some cases there is sympathetic excess because of molecular abnormalities such as increased angiotensin II, decreased neuronal nitric oxide and NET deficiency. So exercise and bed elevation may be help for some but definately not all cases of OI and POTS.
These theories about 'retraining' really come back to a basic assumption about the nature of these conditions - that they represent deconditioning. THis is clearly not the case - I know a patient that was training for a marathon when he first experienced symptoms of POTS. It has diverse causes and ultimately diverse treatments will be required when there is concensus in the etiology.
 

taniaaust1

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I did things the opposite way and when my POTS was very severe, I was sleeping with the leg end of the bed raised. I couldnt sleep otherwise as i was far too dizzy.. so was having to sleep head low. This did help my POTS as it stopped it's symptoms while laying down at least, (stopped the head pressure feel, feeling sick and dizzy). i think if i raised the head and slept like that, i would of passed out so the head up tilt probably would of been dangerous in my case, (POTS was making me go completely unconscious for up to 5 mins at times). The POTS over time improved as my CFIDS did (and i learnt to manage it better eg drinking lots)
 
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I recently bought a bed that elevates the head and knee areas. I have found that this is particularly helpful when waking up. I raise it a few inches at a time until I get adjusted to it. When I am almost fully sitting, then I can make a transition to walking. It takes me about an hour, but it does help me in the morning not feel like I will faint when I get up. I also keep it raised during the day, and I think this helps me when I get up and down.
 

glenp

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I did things the opposite way and when my POTS was very severe, I was sleeping with the leg end of the bed raised. I couldnt sleep otherwise as i was far too dizzy.. so was having to sleep head low. This did help my POTS as it stopped it's symptoms while laying down at least, (stopped the head pressure feel, feeling sick and dizzy). i think if i raised the head and slept like that, i would of passed out so the head up tilt probably would of been dangerous in my case, (POTS was making me go completely unconscious for up to 5 mins at times). The POTS over time improved as my CFIDS did (and i learnt to manage it better eg drinking lots)
i have heard of this helping tania. Do you somewhat reverse that before getting up?

glen
 

taniaaust1

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No glen I didnt. When the POTS is severe, the less time I was upright the better in my case. My BP dont ditch down like some with POTS do on getting up out of bed ... (my BP sky rockets upwards instead when Im upright for a while).
 

toddm1960

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If I lay on a flat surface, either a bed or couch, I feel like my throat is closing off. Raising the head of my bed 6" has been a life saver, it helps with both my reflux and throat. Does anyone else have these throat issues when laying flat?
 
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I get reflux at night ; to stop that I drink some sodium bicarbonate in water before going to bed
but a dairy free diet stops the reflux or makes it lot less
I was leeping with my legs up on 3-4 pillows for comfort
my OI specialist advised me to stop
I did and it helped
I pee much less overnight now
 
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So getting up to pee a lot at night is a POTS thing?? My GP told me to check for fibroid pressing on bladder. I also can't imagine feeling better with head of bed raised as the more horizontal or inclined I am, the better I feel. I don't really understand that theory. But I'll try anything.
 

Sushi

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So getting up to pee a lot at night is a POTS thing?? My GP told me to check for fibroid pressing on bladder. I also can't imagine feeling better with head of bed raised as the more horizontal or inclined I am, the better I feel. I don't really understand that theory. But I'll try anything.
Getting up to pee a lot isn't specifically a POTS thing. It is probably more likely a diabetes insipidus thing (very different from what is usually known as diabetes). DI is talked about on a lot of threads and while it does seem to be involved with POTS, many who don't have POTS have DI--in fact a lot of us have it or have had it in the past.

Sushi
 

golden

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oops :(

voted the wrong option.

what helped was raising head above 12 inches and raising legs above 12 inches too.
 

golden

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What, so you dipped in the middle? :thumbdown:

like a:

) shape - its funny really but I found my body will tell me when it want s me to put my legs flat.

I got more rest raising the legs in this way and supporting the knees.

The other thing I wanted to sing the praises of is made to measure compression stockings -

For me they have just been amazing.

And as a bonus accidental discovery, whilst wearing them - particularly on the first day of my period, for the first time EVER - i got NO knee pain!!! It is usually really bad knee pain. It must be a lymphatic problem - maybe :)

So, whoever advised me of the compression stockings - you are a star :)

I am working on the lymphatic system as I think this the major key for me. :)
 

Sasha

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Interesting - that's actually how I rest on the sofa, which is too short for me to lie flat! :)