Guidelines For Sleep Position?

[Machair 0]

Has anyone been advised by their doctors on the number of pillows to sleep on at night in order to wake up with the most blood volume in the morning to lessen symptoms. I tend to sleep on one pillow and as I sleep on my tummy it is quite a flat pillow. Towards the morning things get difficult as I will wake up sweating around 4-5am, which I presume is due to the low blood volume causing the body to release adrenaline to keep blood moving. Also nights when I sleep well are worse as I am much more orthostatic on rising than when I am up and down all night restless. Does anyone else find this?

[bombsh3ll 0]

Hi Machair,

Generally the advice is to have your whole bed on a tilt ie with bricks or books or something under the top feet, rather than just raising your head on extra pillows.

I have personally not found it helpful but still have mine on a slight incline. 

B xxx

 

[Pistol 0]

@Machair - I agree, the consensus is to raise the top of your bed about 2 inches on blocks to promote better circulation during sleep. 

[Lily 0]

I, too, was told that the whole head of the bed has to be raised.  I tried it, and found that it does work, and it didn't feel all that odd.  It was easy to get used to it.  Mine us up about 4 inches.

[FileTrekker 0]

I’m not sure how well raising works. I feel like it helps in some ways and hinders in others. I feel less tired but more pressure in my head during the day.

[Shepard1 0]

I am too a tummy sleeper and tried raising the head of the bed, but was able to feel the slight slope to discontinued.  Wouldn't say it worked.   I also wake up with either sweating or nausea.  I have a fan next to my bed that I turn on when I wake up sweating.  It helps a lot.  I also set my alarm earlier than I used to for work,  then put the alarm on for the right time.  I do this so some symptoms like nausea and sweating from rousing can settle a little before getting up for real.   In the early days, I used to have deal with raised HR, severe sweating  with nausea and vomiting.  Pleased that I am not going through that again.

Hope things settle for you. 😊

[RecipeForDisaster 0]

I have the head of my bed elevated on stands, because it's supposed to help your kidneys retain fluid better. I'm doing so badly, I don't know if it has helped or not. 

 

I usually wake up blazing hot, nauseous, and tachycardic at about 2-3am. I despise it.... it makes it so hard to fall back asleep.

[bombsh3ll 0]

14 minutes ago, RecipeForDisaster said:

I usually wake up blazing hot, nauseous, and tachycardic at about 2-3am. I despise it.... it makes it so hard to fall back asleep.

Was that happening before you raised your bed? Also how high is your bed raised?

It could be that sleeping significantly head up is causing cerebral hypoperfusion, leading to those symptoms as compensation (like during the day). 

My bed used to be up higher than it is now, but I lowered it as a) it made no difference (although I was on licorice root then) b) it was uncomfortable c) I like there being at least a few hours in the day when my brain is adequately perfused and d) I was concerned that if I fainted whilst asleep I would have no way of falling flat to restore perfusion. 

B xxx

[RecipeForDisaster 0]

Hmm interesting idea. It's raised about 6". It did happen before, though. I don't find it uncomfortable, at least.

 

However, I don't usually get hot when presyncopal. Somehow the waking thing feels different than my usual stuff. Does anyone else feel multiple distinct types of nausea?

 

I have tried to sleep with my legs elevated but my back hurt a lot. That was an idea from one of my doctors.

 

I guess one could switch their head to the foot end to kind of lower the head below the heart.

[bombsh3ll 0]

2 hours ago, RecipeForDisaster said:

I guess one could switch their head to the foot end to kind of lower the head below the heart.

I loved being in an adjustable hospital bed where you could raise the legs up, but I would be wary of sleeping like that because head down tilt is known for inducing orthostatic intolerance in NASA's astronaut studies. The point of sleeping head up is to create the opposite effect. 

On a side note however, when I was 18 I had very heavy bleeding for many weeks during my first pregnancy, this was before I had any medical knowledge. I decided to go one better than bedrest and spent weeks lying head down on a sofa with a car jack under the foot end. I never got POTS then. The increased blood volume of pregnancy may have mitigated it though. 

B xxx

[RecipeForDisaster 0]

Right, I'm taking about temporary lowering of the head, like I did last week when I passed out. This time I actually still lost consciousness, but it would usually help. 

[Machair 0]

Thank you all for your comments they are appreciated so much 😁 Does anyone wake up feeling well or normal any more?

[bombsh3ll 0]

2 hours ago, Machair said:

Does anyone wake up feeling well or normal any more?

In a word no. I feel at my best (although far from well) in the evenings, when I assume my blood volume is highest, but I go to sleep and feel like death all over again by morning. It would be great if we didn't have to sleep!

B xxx

[Lily 0]

The elevated bed position helps me to not have to pee after 3 hours.  I can make it to 6 hours instead.

 

[bombsh3ll 0]

4 hours ago, Lily said:

The elevated bed position helps me to not have to pee after 3 hours.  I can make it to 6 hours instead.

Desmopressin is great for that, didn't help my OI though. What time of day do you take your fludrocortisone?

B xxx

[Lily 0]

18 hours ago, bombsh3ll said:

Desmopressin is great for that, didn't help my OI though. What time of day do you take your fludrocortisone?

B xxx

I take mine in the morning.  Clonidine is split between morning and evening.