Bed wedge for OI/POTS

[Sasha]

Having just spent 35 on a two-foot-long bed wedge to put under my mattress because I can't raise my entire bed, I have just seen this blogger passing on her OI specialist Dr Levine's advice that raising your upper body isn't enough, you've got to tilt the whole bed. He says: "It is not very helpful to just elevate your head on a wedge. In order to be most useful at expanding the plasma volume, you need to sleep with your WHOLE BODY on an angle. "

She has a helpful picture on her site of what that looks like. I'm going to work out the measurements and email them to a local foam cut-to-size firm and ask them what they can do (bearing in mind that the wedge will go under the mattress I think I'll have to go for a simple triangular x-section).

I hope this is helpful and saves others some money. I wish I had the sort of bed that could be tilted on bricks or something!:worried:

 

[BEG]

This has been very helpful, Sasha. My mattress with a foam topper is 35" off the floor. It also has a wooden canopy. It's king size and very heavy. I am clueless how to raise it. I have thought of using bricks but worry about stability. Isn't the angle supposed to be 10% or do I have that wrong? This from my brainy husband: if the bed is 72" long, a 10 degree angle would be 7.2" We're going with bricks, I think.

I really want to try this. Please let me know how it goes. i think we should have a poll: Raising your bed, has it helped? Anyone?

 

[Sasha]

This has been very helpful, Sasha. My mattress with a foam topper is 35" off the floor. It also has a wooden canopy. It's king size and very heavy. I am clueless how to raise it. I have thought of using bricks but worry about stability. Isn't the angle supposed to be 10% or do I have that wrong? This from my brainy husband: if the bed is 72" long, a 10 degree angle would be 7.2" We're going with bricks, I think.

I really want to try this. Please let me know how it goes. i think we should have a poll: Raising your bed, has it helped? Anyone?

Hi Brown-eyed Girl (great name!) - glad that was helpful! I have read that you need an angle of 10 to 15 degrees. For a 72" (six foot) bed, with a 10 degree elevation, I think the height of the wedge you need is actually 12.7" (apologies to your husband!). There's a handy online calculator here for right-angled triangles - you use the dropdown menu to say you want to calculate the opposite side (the height of the wedge) and the hypotenuse side (which you're not really bothered about but you've got to put something) and enter "adjacent side" as 72 and angle as 10, for example. It gives you, for a 72" long bed:

degrees, height
10, 12.7"
11, 14.0"
12, 15.3"
13, 16.6"
14, 17.9"
15, 19.3"

This site (European Federation of Neurology Societies' evidence based guidelines for orthostatic hypotension) talks about raising the bedhead 20-30cm (i.e. 8" to 12"). This research paper tested an elevation of 18" on healthy test subjects for a week.

These higher figures are quite a ski slope! I have compromised by going for 10" in total.

On the other hand, I have just (while googling for this post) read this here:

"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 their orthostatic tolerance. This method was originally developed to help patients with classic orthostatic hypotension diseases, such as Shy-Drager syndrome (multiple system atrophy) 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."​

Aagh! Must now phone my doc and ask what my supine BP was.:worried:

Anyway, this morning I ordered some foam blocks and wedges to make a big under-mattress wedge for my double bed. It cost 122 (UK people - this sort of purchase is eligible for zero VAT rating which will save you 17% on the cost - adapt this HMRC example form).

I can't lift heavy stuff and live on my own so wanted something light to use (I will need help lifting the mattress!) and I ordered the wedge in six sections. I'm going for a total height of 10" on my bed which is 72" long and 52" wide and want to be able to take single bed size wedges away with me if I travel. So if you imagine my whole-size bed wedge cut into quarters (once down the length of the bed and once across the width), and then the top end cut horizontally to make a wedge sitting on top of a rectangular block, that's what I'm going for. (like this picture but without the bits where the model's feet are, and two of them side by side).

I just read somewhere else (so many sites! can't remember which!) that it takes a few days to start noticing the benefits.

Once I've checked with my doctor about my supine BP and once I've been trying it for a week I'll post about it - that will be in about two weeks' time, I hope!

Good luck with the bricks! I'm very interested to hear how you get on (I think you'll be ahead of me because it's going to take a week for the foam to arrive).

 

[rebecca1995]

These bed raisers, available at places like Target in the US, have been very helpful for me:

http://www.target.com/gp/detail.htm... Listing Ads&LNM=Primary&ref=tgt_adv_XASD0001

You can adjust them to several different heights, according to your preference. If you travel, you can easily use them to raise the head of your hotel bed. They're lightweight and a lot easeir to deal with than bricks and stacks of boards, which is what I formerly used!

I've had the head of my bed elevated for about 12 years. At first, I noticed a distinct improvement in OI and strength. That seemed to wear off after a while, but I feel worse if I sleep several nights in a flat bed.

 

[Sasha]

These bed raisers, available at places like Target in the US, have been very helpful for me:

http://www.target.com/gp/detail.htm... Listing Ads&LNM=Primary&ref=tgt_adv_XASD0001

You can adjust them to several different heights, according to your preference. If you travel, you can easily use them to raise the head of your hotel bed. They're lightweight and a lot easeir to deal with than bricks and stacks of boards, which is what I formerly used!

I've had the head of my bed elevated for about 12 years. At first, I noticed a distinct improvement in OI and strength. That seemed to wear off after a while, but I feel worse if I sleep several nights in a flat bed.

These look brilliant, thanks rebecca1995! It will be loads easier to use something like this when travelling than to take half my bed to bits and carry massive foam wedges about with me. Great find!

 

[Sasha]

i think we should have a poll: Raising your bed, has it helped? Anyone?

I think that's a really good idea! Can only administrators start polls?

 

[Sasha]

i think we should have a poll: Raising your bed, has it helped? Anyone?

I figured out how to do it (sort of!). It's here. Good idea!

 

[BEG]

Sasha, Thanks for all the great O.I. info. and math lesson. I'm still reading and absorbing it. I guess with the math we were confusing degrees with percentages. Thanks, also, for starting the poll. It will be interesting to see the results.

rebecca1995, Thanks for the Target info. on the bed raisers. So perfect! I am ordering today.

 

[gracenote]

I raised the head of my bed for many months several years ago. I did it because I was having sever gastritis and was told this would help. It took awhile to get used to sleeping on a slant, and getting out of bed on a slant, but I got used to it. Did it help my OI/POTS? I wish I knew there were too many other things going on at the time. After this experiment, I was "doing better" for awhile but credited that to my other treatments.

My main reason for not wanting to raise the head of my bed again will sound a bit silly. Visually, I'm bothered by seeing my bed at an angle I keep getting "messages" that something is "off" and needs to be "fixed." It doesn't look "normal," so it doesn't just disappear into the background. Since I can see my bed from where I spend my day on the couch, it is an aspect I take into consideration. I might change my mind again if I hear of successes from others.

 

[BEG]

My main reason for not wanting to raise the head of my bed again will sound a bit silly. Visually, I'm bothered by seeing my bed at an angle I keep getting "messages" that something is "off" and needs to be "fixed." It doesn't look "normal," so it doesn't just disappear into the background. Since I can see my bed from where I spend my day on the couch, it is an aspect I take into consideration. I might change my mind again if I hear of successes from others.

Not so silly, Gracenote. In my range of vision from my recliner, if something is askew, it bothers me and I must make it right. But then there are the days I'm so ill, the house could be upside down, and I wouldn't notice.:worried:

 

[BEG]

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."Aagh! Must now phone my doc and ask what my supine BP was.:worried:

Sasha, How does your doctor know your nighttime BP? I can have extremely low BP's during the day. And it's definately at its lowest when I'm supine. Did you have a sleep study done? I have no idea, however, what's going on while I'm sleeping.

 

[Sasha]

Sasha, How does your doctor know your nighttime BP? I can have extremely low BP's during the day. And it's definately at its lowest when I'm supine. Did you have a sleep study done? I have no idea, however, what's going on while I'm sleeping.

It's only my supine BP that my doctor took, when I was at the surgery during the day having my diagnosis (I lay down for a while and then did the standing test). I was hoping that that might be a good enough guide, although the source I quoted says that your BP can drop when you sleep. I asked a retired nurse friend of mine how it is possible to take someone's BP while they're asleep, given that the cuff is so painful when it inflates that surely everyone would wake up, and she didn't know, but did know that 24 hour monitoring of blood pressure does go on.

 

[Lesley]

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."

After reading this, I checked my daughter's BP while she was still in bed this morning. It was only 82/44. Yikes! No wonder she has such a hard time getting up in the morning. I think I'll remove the blocks.

 

[rebecca1995]

gracenote:

My main reason for not wanting to raise the head of my bed again will sound a bit silly. Visually, I'm bothered by seeing my bed at an angle...

I know what you mean, gracenote. A family member told me my bed looks like "the Titanic going down". :Retro smile:

 

[Sasha]

After reading this, I checked my daughter's BP while she was still in bed this morning. It was only 82/44. Yikes! No wonder she has such a hard time getting up in the morning. I think I'll remove the blocks.

Wow, Lesley! That's some BP measurement. Was she better this morning, having slept without the blocks?

You have inspired me to get a home BP monitor so that I can take my on-waking BP (nearest thing to a sleeping BP for now). Having read up on it, upper arm - not wrist or finger - ones are recommended as being accurate and I got a very highly-rated one with an automatically inflating cuff on Amazon for only 15 (the Omron MX2, rated an average of 4.5 by 103 customers). I couldn't find that model on US Amazon but there are many other Omron ones (a bit more expensive) also getting high ratings from high numbers of customers.

 

[Lesley]

This morning it was 91/50. That's a pretty significant difference, so no more blocks.

I got an Omron BP monitor from Amazon after buying a cheaper one locally that gave me more error messages than BP readings. The Omron works great.

 

[Sasha]

This morning it was 91/50. That's a pretty significant difference, so no more blocks.

I got an Omron BP monitor from Amazon after buying a cheaper one locally that gave me more error messages than BP readings. The Omron works great.

Glad to hear of the improvement! I hope she also felt better.

The effects of sleeping with your bed tilted are supposed to take a few days to kick in - no idea if the same is true of lying flat again!

 

[kerrilyn]

I had a BP monitor and like you Lesley I got more error messages than BP readings so I bought a Omron tonight (HEM-775CAN) but it's not fairing much better. It's even suppose to pick up on arrythymias. I got a few readings 90/63 (75 HR), and 92/58 (89 HR) with errors inbetween. Your daughter's BP is lower than mine, so I don't understand why I can't get them to work. My neighbour said maybe the cuff is too big, but I'm not thin. ....edit: I think I figured it out, I'm too short, not wearing it high enough (I hope).

82/44 is scary low. It's too bad she's going through such things at a young age.

 

[Jenny TipsforME]

Thanks for the information about low blood pressure and the bed raising thing not being specific to PoTS. I was just about to buy bed wedges but tend towards low BP so think I'll pass on that for the time being.

Also, when is BP so low you should follow up even if you know the cause?
Today is 94/60 lying down but on another day I got 81/49 with pulse 52bpm sitting. Of course my home monitor could be wrong but I had relevant symptoms with it. I take beta blockers for PoTS.