Does It Help

[Mary P]

Hello to all:

Just wondering if anyone has truly noticed a difference if you have raised the head of your bed. I used to have mine raised by about 5 inches and all that did was cause back pain. I had it changed to only 2 inches but still my head is rarely comfortable. Perhaps this is because of neck instability.

At any rate I slept in a different bed last night, one where the head wasn't raised at all, and I had the best sleep in several years. However, the same old head/neck problem arose when I lay down for a nap in my own bed this p.m. and now I'm wondering if I'd be better off having those final 2 blocks removed.

My new N suggested that I probably didn't need the 30mg/day Midodrine that I'd been taking for about 1 1/2 years, so over the past 5 months I've slowly cut that back to 10mg/day and I don't find any difference in so far as BP/HR goes. I know this because I've kept track of my BP/HR 2x/day for 3 1/2 years. He has asked that I take a copy of several days on my next visit.

Now I'm wondering if I can also get rid of the bricks that raise the head of my bed.

Has anyone here had a similar problem? Any advice would be most welcome.

Thank you for this. Mary P

[dianne.fraser]

Mary

The first dysautonomia story I ever read was a published case report by Spanish economics professor Michael Rocinante (Clin Auton Res (2008) 18:48-51) - he found that elevating the head of his bed to 45 degrees improved his orthostatic hypotension and stopped him from having to get up so often through the night to go to the bathroom. He wrote that he tried various angles, but anything less than 45 degrees didn't work as well. He also wrote that sleeping this way took months to get used to and, after a year, was still not comfortable, but it was bearable.

I haven't tried this approach personally - my bed isn't really built for it, and laying flat is really soothing to my illness.

With best wishes

Dianne

[houswoea]

I tried it and I didn't think it made any difference for me. The only good thing about it was that I could lay down without getting a headache from midodrine.

[Notgivinup]

I have two bricks under mine. Can't say if it's made a difference. It IS uncomfortable, but I've gotten use to it now. I'm just keeping it that way in case it's doing something. It's suppose to increase blood volume, how I can't really understand.

[carinara]

As soon as i lay down flat on my back i can feel my heart beating all over the place, and i can see it also because my stomach is jumping up and down.

My cardiologist told me a few years ago, that i should try to sleep in a more upper position. I know that he tells that all his other patients with all kinds of heart and BP probems too. Ever since that day i sleep more in a sitting than in a laying position. I bought myself a special pillow which i put in my bed. I dont remember the last time when i slept flat on my back. I must say, that it does make a difference to

me. That way i can honestly say, i get less tachy and i can feel my heartbeat less.

Like i said, i never lay flat on my back anymore.

[toddm1960]

I have mine raised 5 inches and it's been a life saver for me. When I lay flat or bend over it feels like I'm being choked, it's like my throat is closing off. I get pressure in my head and eyes. It makes it tough for me to sleep in any bed not raised, I end up putting as many pillows under my upper body as I can but that doesn't work as well. My sweet wife feels like she's going to slide out of bed but she puts up with it/me.......poor girl.

[potsgirl]

I have my bed raised about 5 inches primarily because I have OI and I think it does help. It took a little getting used to, but now it feels 'normal'. It also helps with hiatal hernia and esophagitis problems, but I'm sure it doesn't work for everyone. I also have a contour pillow and that really helps me sleep better. Try sleeping without the incline, and see what feels better, and go with that. Only you can really decide.

Cheers~

Jana

[firewatcher]

I absolutely can NOT sleep inclined at all. Not in a car, plane, chair, recliner or propped on pillows!

[toddm1960]

This is typical of everything with POTS..........something that helps half of us, makes the other half worse.

[nmorgen]

I am so glad someone asked this question. I have read that it helps to sleep on an incline, but I just can't. I have tried and even when i fall asleep i constantly wake up with neck and back pain. Does anyone know exactly how sleeping at an incline is suppose to help with blood volume?

[TXPOTS]

I am so glad someone asked this question. I have read that it helps to sleep on an incline, but I just can't. I have tried and even when i fall asleep i constantly wake up with neck and back pain. Does anyone know exactly how sleeping at an incline is suppose to help with blood volume?

The partially upright position at night is supposed to train the kidneys into retaining sodium and fluid. Lying flat for prolonged periods (days to weeks) has been shown in studies to reduce blood volume in healthy patients. Some physicians tell POTS patients to try to lye in a recliner rather than flat in bed during the day for the same reason. I have my bed inclined a few inches. I probably need at least 5 inches, but I have problems with pooling in my legs at night when I try to raise my bed too high.

[green]

I absolutely can NOT sleep inclined at all. Not in a car, plane, chair, recliner or propped on pillows!

I am in the same boat as you, Firewatcher. Even as I take off in an airplane, and feel like my head is filling up with sand (sedation from the air-pressure change), I can't sleep in a chair. I can't sleep in a chair, even though I am a narcoleptic!

Eerily parallel to our current thread: my brother is diagnosed narcoleptic also, and I suspect he has a milder form of my dysautonomia. HE falls asleep anywhere - trains, planes and automobiles. Unbelievable.

I have the equivalent of a cinder block under my 10-foot long bed, and I have been able to adjust to it. I also sleep better - I don't wake up feeling like my head is spinning anymore.

I recommend using books under the foot of the head of the bed. Gradually adding to the stack will allow you to adjust gradually.

[Jan]

I slept with my bed raised for 10 years. I noticed when I slept in a hotel, I slept much better and got up at night less.

I just got a new bed last month and didn't raise the head. I sleep better, get up less, and no longer have the lower back pain I had.

I do have horrible acid reflux and I think the raised bed helped with that, but now if I put a few pillows under my head and sleep on my back, it is OK.

I could NEVER sleep on my back with the bed raised or I would have horrible back pain.

[Mary P]

Thank you for your responses. They point out how each of us is so different in what does or doesn't help. I had the final bricks removed and I do believe things are better for me now. I have no more sore back before getting up for the day and I don't get up as much during the night. These are a bonus for sure.

mary p