Elevating head of bed

[dawn]

Hi,

The last neurologist I saw, suggested I elevate the head of my bed on cement blocks when I sleep. He said it should help with the early morning tachycardia. I thought I read somewhere this could cause blood clots in the legs.

Any input would be appreciated.

Thanks.

Dawn

[Chrissy]

I had read that also and had concerns because I sleep in a waterbed and that would not be possible. But then last night I found some information that stated that it used to be thought to do this but then they found out it was not a good idea. As soon as I find it again, where I read it, I will direct you to it so you can also see why they said that. I hope this helps!

[Chrissy]

I just found it! It is found in a very long article at http://home.att.net/~postsweb/POTS.html

The specific part about the bed says:

It has also come to my attention that some doctors continue to advise POTS and NMH patients that sleeping with the heads of their beds slightly elevated at night will improve the orthostatic tolerance. This method was originally developed to help patients with classic orthostatic hypotension diseases, such as Shy-Drager syndrome (multiple system astrophy) and Bradbury-Eggleston syndrome (idiopathic orthostatic hypotension). Those diseases usually cause supine hypertension (high blood pressure while lying down). It was simply assumed, without clinical studies, that elevating the head of the bed would help those with other orthostatic intolerance conditions as well.

There is now documented evidence to suggest that some percentage of POTS and NMH patients experience supine hypotension (low blood pressure while lying down), which often manifests itself after the patient falls asleep. If your blood pressure drops to below normal levels while sleeping, the last thing you want to do is to sleep with the head of your bed raised, thus draining even more blood and vital oxygen from your brain while you are unconscious. It is therefore advisable that patients only elevate the head of their bed at night if they have proven supine hypertension."

I found this whole article to be very helpful for me as I am just learning about POTS. I still have not gotten the official diagnoses from the cardiologist or the neurologist. But the symptoms keep multiplying. They will eventually figure it out. In the meantime, I am just keeping a journal to take each time I have my appointments.

[steph37822]

oops

[persephone]

Stick with it! It will be **** for the first couple of weeks if you're anything like me, but it's been wonderful over all. I couldn't walk when I was in hospital in April. Then they tilted my bed, took me OFF midodrine and my bb, and just waited. I was livid at first "how can you just make me wait like this? It's so uncomfortable to sleep at an angle, surely my feet should be up, not my head!"- you know the way we get when we think Doctors are being silly etc...

But I persevered and am so glad I did. I walked out of the hospital! I am able to walk some every day now. And if I try and sleep with the bed flat- it is SO not a good idea. I wake up feeling SO poorly and then my pulse is off on one again.

If you think about it logically, I guess you're trying to get your body used to not being flat, so that your heart isn't as overworked when you do stand. It definitely worked that way for me. I'm not waying I don't get bad days-I do. I've had days where I've felt really, really ill. But the point is, I seem to be getting more and more days where I am physically better, too.

try it- what's the worst that can happen? (as the dr pepper ad always says!)

good luck, and keep us posted!

A word of warning though- if you have a divan bed, it may not take the weight if you tilt it. I ended up having to get a new electric tilting hospital sytyle bed. Luckily my cardio recommended it and my Occupational Therapist got it for me on the NHS. But I don't know how things work abroad...

[Gena]

I read on another post about this topic recently that someone said elevating the bead or your head while sleeping can help build blood volume. Not sure if this is true, but I did read it on a post here recently.

I sleep in an elevated position and it definitely helps. I cannot sleep flat, as I have a lot more arrythmias.

gena

[persephone]

I think you're right, Gena. The reason my cardio did the head up tilt was because he reckoned it would increase blood volume.

[blackwolf]

i can't lay flat at all, except for tests(mri, cat, etc.)

i sleep at about 60+degrees, so i seem to be the exception to the rule.

blackwolf

[Sophia3]

I tilted my bed on concret blocks for about a year and got WORSE..we undid it...it was not tilted as much as some beds but enough.

MANY OF US GET WEAKER with this...Also one doc wrote an article years ago that slightly elevating FEET would help some POTs pts more but I have not been able to find the site. A cardio I saw after my tilt briefly mentioned the article.

Chris Calder mentioned it once on his site but I think he told me he lost the article. I WOULD LOVE to find and read about elevating the feet.

I feel MUCH BETTER WITH FEET level with heart or over my head...I put my legs on pillows or over edge of couch or loveseatl.

Be careful about jumping on the elevating head bandwagon...it made me feel worse but it was a long time before I realized it...Chris calder had a post about this years ago on his site...don't know if he still does or not.

I feel MUCH BETTER lying down but work to walk and exercise to FIGHT gravity.

[DancingLight]

blackwolf,

what happens when you lie flat? i was wondering how it makes you feel?

i sometimes have trouble lying flat too. and i often wake up at ningt so 'puffy' and hot.

i seem to do best in a 'u' shape...like the recliner creates or in my adjustable bed (yes, i know, it is my princess bed...go ahead and tease me!)

does anyone else find this 'u' sort of shape to help them the most. my feet do not need to be higher than my head for this to work.

emily

[DSM3KIDZ]

I realized my migraines/headaches started around the same time I elevated my bed. I'm going to try a few weeks lying flat and see if that helps.

Dayna

[steph37822]

oops

[blackwolf]

dear emily,

about lying down flat, i feel ok for about 10 minutes, then i get this heavy full feeling in my head( the part that is down-usually the back of my head) then this terrible painful pressure feeling that fills my head and neck. i just seem to feel like my head is going to either blow up or i'm going to start leaking liquid out me ears, nose and mouth, i feel "full" in my head and the longer i lay there the worse it gets. it becomes so painful i usually have to get out of the machine or get some kind of heavy duty drug. twice i have had to have valium and demoral just to get thru a test. once i was monitored and my bp and hr went really high then crashed to almost nothing and i usually feel really bad( dizzy, nauseated, no balance, lightheaded, fainting, blurred vision, ringing in my ears-really loud, ect.)sometimes for hours. and then potsy for the next week or so.this can also be a problem during sex, thru years of experiments, i have found that i can lay at an angle with a few pillows beneath my shoulder and head, but only for about 10-15 minutes. i have actually fainted during both tests and sex. i don't care so much about the techs doing the tests, but during sex is a real bummer.

sorry that might offend someone but i have to tell the truth and i have to speak my mind, sorry to anyone it bothers.

blackwolf