Machair Posted May 9, 2019 Report Share Posted May 9, 2019 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? Quote Link to comment Share on other sites More sharing options...
bombsh3ll Posted May 9, 2019 Report Share Posted May 9, 2019 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 Quote Link to comment Share on other sites More sharing options...
Pistol Posted May 9, 2019 Report Share Posted May 9, 2019 @Machair - I agree, the consensus is to raise the top of your bed about 2 inches on blocks to promote better circulation during sleep. Quote Link to comment Share on other sites More sharing options...
Lily Posted May 9, 2019 Report Share Posted May 9, 2019 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. Quote Link to comment Share on other sites More sharing options...
Shepard1 Posted May 10, 2019 Report Share Posted May 10, 2019 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. 😊 Quote Link to comment Share on other sites More sharing options...
RecipeForDisaster Posted May 10, 2019 Report Share Posted May 10, 2019 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. Quote Link to comment Share on other sites More sharing options...
bombsh3ll Posted May 10, 2019 Report Share Posted May 10, 2019 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 Quote Link to comment Share on other sites More sharing options...
RecipeForDisaster Posted May 10, 2019 Report Share Posted May 10, 2019 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. Quote Link to comment Share on other sites More sharing options...
bombsh3ll Posted May 10, 2019 Report Share Posted May 10, 2019 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 Quote Link to comment Share on other sites More sharing options...
RecipeForDisaster Posted May 11, 2019 Report Share Posted May 11, 2019 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. Quote Link to comment Share on other sites More sharing options...
Machair Posted May 13, 2019 Author Report Share Posted May 13, 2019 Thank you all for your comments they are appreciated so much 😁 Does anyone wake up feeling well or normal any more? Quote Link to comment Share on other sites More sharing options...
bombsh3ll Posted May 13, 2019 Report Share Posted May 13, 2019 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 Quote Link to comment Share on other sites More sharing options...
Lily Posted May 15, 2019 Report Share Posted May 15, 2019 The elevated bed position helps me to not have to pee after 3 hours. I can make it to 6 hours instead. Quote Link to comment Share on other sites More sharing options...
bombsh3ll Posted May 15, 2019 Report Share Posted May 15, 2019 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 Quote Link to comment Share on other sites More sharing options...
Lily Posted May 16, 2019 Report Share Posted May 16, 2019 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. Quote Link to comment Share on other sites More sharing options...
WanderWonder Posted December 27, 2019 Report Share Posted December 27, 2019 I've been sleeping with the head of my bed elevated by 9 inches using raisers. It used to be 6 inches, but acid kept coming up my throat on some days, so I increased it. I think it's at 20-30 degrees now? I haven't noticed any changes in POTS symptoms or sleeping heartrate though. Quote Link to comment Share on other sites More sharing options...
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