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Monstrosity

To Raise The Bed Or Not?

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Last year when I was first diagnosed they said to raise the head of the bed. I did it a hillbilly way but it was no more than 3 inches. When I got my second opinion I was told to raise it 5 or 6 inches. I did the 5 inches for two weeks. The headaches were so intense in the morning I didnt want to get up. Not to mention I felt like I was constantly falling off the bed. So last week I put the bed back to flat. It seems to have helped but I think a little rise would be beneficial. Just seeing what everyones thoughts were?

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I keep waking up at five am with severe migraines and nausea. I have my bed raised about 4 inches- did it a few months ago when I first got sick. Now I am wondering if I should lower it. I don't have hypotension, issues are more with heart rate . Am curious as to what others will post about this too.

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I'm glad you asked this question because I have also wondered about this. I have read good arguments for each side on this issue.

When I first got sick, I had some bad experiences with being flat so I just figured out that I did better with raising my head. That was prior to a POTS diagnosis, so I hadn't read anything about it at that time. Hypovolemia was a big issue for me then (to the point where blood didn't come out when I was cut or would stop coming out when they tried to take blood), so common sense would seem to tell you to not elevate the head of your bed because it will reduce the amount of blood to your brain while you are sleeping- for some reason I was worse when flat though (???). I do still have night time heart issues with being raised up, but I don't have headaches or other symptoms (at night).

Seems like maybe it's an individual thing...

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I've raised mine very slightly, but it hasn't helped the acid reflux or with the BP issues.

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I tried raising mine also and didn't find it to help any. It didn't seem to have any adverse affects for me, but it didn't do anything to help either & my poor husband was uncomfortable! Lol

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i have to wide pillows under my head of a night, without them i wake feeling really ill in the morning. if say one has come away, until i slowly raise myself over the next few hours, i have a headache. laying flat is a no,no.

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I just watched the Rowe video said to raise it 15% if tolerated, ( the amount of 2 bricks they said ) because it does something that may make the kidney conserve some fluid

If I was sure it was causing me headaches I would not do it myself, as I would figure everyone is different.

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I spent a lot of money on a split king (basically two twin longs together) so I could elevate my bed 6 inches and my wife wouldn't have to. It seemed to help some, although it's really hard to tell what's really helping when you are trying so many different things (like changing meds or eating different). It took me a little bit to get used to it, but I sleep fine now. I may even try to raise it higher if I can.

My thought is I need to try everything I can to get better and I'm motivated to do it for me and my family. I'm really motivated by the natural, non-medicine interventions when possible. If there were some theories that eating dirt would help, I would do that! Next on my list, starting today actually, is starting tilt training at home. Why not?? I tried it last week and was challenged with pre-fainting symptoms within 10 minutes. It's not easy I'm sure, but I don't want to live this way anymore.

I'm going to fight!

http://www.medscape.com/viewarticle/703289_4

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I spent a lot of money on a split king (basically two twin longs together) so I could elevate my bed 6 inches and my wife wouldn't have to. It seemed to help some, although it's really hard to tell what's really helping when you are trying so many different things (like changing meds or eating different). It took me a little bit to get used to it, but I sleep fine now. I may even try to raise it higher if I can.

My thought is I need to try everything I can to get better and I'm motivated to do it for me and my family. I'm really motivated by the natural, non-medicine interventions when possible. If there were some theories that eating dirt would help, I would do that! Next on my list, starting today actually, is starting tilt training at home. Why not?? I tried it last week and was challenged with pre-fainting symptoms within 10 minutes. It's not easy I'm sure, but I don't want to live this way anymore.

I'm going to fight!

http://www.medscape....rticle/703289_4

Did you get an adjustable split? I looked into one but they start around 5K. I was ready to pull the trigger but my better half said not to...

What is Tilt Training?

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I actually purchased a sleep number bed, as I didn't want to take the risk of getting a bed that I didn't like. I fairly happy with it, took a little while to adjust to the new bed.. but I think that's normal. I didn't get the one that bends up and down, didn't see the point. As for elevating, I simply used a regular frame and put 2 by 4's under the one side. I do have a log frame bed, so it stops the bed from sliding off the box spring... if you didn't have that I could see that it would probably slide down.

As for the tilt training, I should probably put a new post on that and see what people have thought about it or if the tried it. Seems I have found research that states it works. Here is one:

http://www.ncbi.nlm.nih.gov/pubmed/10534467

Did the tilt training at home today and did 30 minutes without feeling like passing out. It was just hard standing still for 30 minutes without moving, as my knees hurt and feet started hurting.

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I got a wedge pillow and it helps a little. Sometimes I think it helps with acid reflux, but mainly it helps in the way that I can slowly make my self vertical when I wake up. I don't notice it helping my symptoms during the day at all though.

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I also watched that Rowe video that (POTLUCK mentioned already) and it was interesting to hear about how elevating the bed helps with blood volume/retaining fluid (not peeing at night). I do have the head of my bed elevated and I never get up to go to the bathroom through the night and I still don't get up to the bathroom until I've been awake for an hour in the morning. I never understood how I didn't need to go to the bathroom after drinking 2 1/2 -3 litres of water & gatorade each day.

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Even if this works, for me disrupting my sleep is not worth it. I have trouble with sleep and started taking ambiem a few moths ago. If I could sleep with the bed elevated I would give it a go. I am always careful to drink (V8 or an emergen c) before get out of bed in the am. If i get up at night to use the loo I always have a glass of water. Staying hydrated at night seems to be someone helpful for me.

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My doctor told me the same thing as Dr. Rowe. The incline helps trick your kidneys into conserving water so you don't pee out so much at night. You drink atlot during the day when you are upright. When you lay day at night, your kidneys release the fluids. That's why you frequently make many trips to the bathroom. Not a sign of partial di.

The raise should be an incline. You can buy foam wedges.

A split bed does not cost $5000. You can get 1/2 that is not adjustable and 1 that is.

Moreover, my doctor did write a prescription for a hospitable bed. But since our beds were old anyway, we decided to go for the split adjustable bed. Go to a regular store. Not the ones you see advertised on TV. You can use one twin ben and one adjustable twin bed. Or two XL beds.

Be sure the raise is gradual as in incline.. I don't think they mean sleeping upright.

But, to tell you the truth, even with the adjustable bed, I found myself slipping down the bed by morning. So I would go with the $40 foam wedge.

Or, if you want to and don't mind sleeping apart, see if you can get a prescription for a hospital bed rental and give that a try before you make an investment. Insurance won't cover an adjustable bed.

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To get the full benefit you need your whole body tilted. I'm not sure if any of the studies included using a wedge. Maybe I'm wrong. But the idea is also to built orthostatic tolerance, by using that gravity with you feet down lower to pull that blood back to your heart all the way from your feet. Tilting the whole bed does this. Almost like a slight tilt training.

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tilted gradually over about 6 months, up to 6 inches now. My pots has improved but there's tons of variables at play so can't pinpoint it on raising.

I had to do it gradually, each time i increase the tilt i keep waking up suddenly in the night, suspect the lack of blood to head causes and adrenalin rush. The body seems to adjust after a couple of weeks. Always feel worse at 1st when increasing the tilt, but the body seems to get used to it.

Deffo better in the morning now, if i suddenly jump out of bed to answer the front door still slight tachy but no where near as bad as it used to be

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I also got a wedge pillow rather than raising the bed. I guess it helps some,but not the huge amount like the docs said it would.

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I've been interested in this, particularly after seeing NASA's bed rest studies where they do an inverse tilt (-6 degrees) on healthy volunteers and get very dramatic results. If a negative tilt does THAT much to them, and I've had good luck with tilt training when I have the time/energy for it, tilting up the bed sounds like it might work for me.

To those who do this, how do you keep yourself from sliding down/out of bed? How much did you do? and how long did it take for you to adjust? and did you feel fine after you were awake for an hour or so?

I'm assuming that starting off slowly and gradually is the best idea.

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I did 4 inches first and now it's at 6 inches. It took a few days to sleep "normal"... although I never sleep normal it seems. It's been 5-6 months now and I think nothing of it now when I sleep. You adjust, kinda like when you are on a boat your body starts getting used to the waves. Somebody mentioned that when he would adjust the height he would wake up in fear or a rush and interestingly that happened to me also. Strange. Maybe the blood pressure does get too low and you wake up in fear. Doesn't happen anymore. I find I slide down a few inches, but nothing big. The log frame I have keeps me from going that far.

I'm so used to the bed elevated now, that when I lie down on a flat bed I feel like it's tilted down on the head side.

As for feeling better.... not sure. I've been in a relapse (well feeling worse than worse :) the last 2 weeks where I felt I may faint like 4-5 times. So, maybe it works and maybe it doesn't. Wish I knew? BUT, it's not harming me and I need to try. My job I sit all day and in the last 6-7 years, I have had to sit more and more, with less movement and physical activity. I think this has been a factor to my issues. I didn't realize it but at work I was always putting my feet up on the desk or crossing my legs. When I got home to relax I was on the couch with my legs up again (not thinking about it) That probably made things worse, like reducing gravity on my legs maybe reducing blood volume (like the NASA study thing). So, I stopped doing that, keep my legs down if I can. When I get home to watch TV, I no longer put my feet up. And of course when I sleep I'm tilted. Maybe it takes awhile?

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