Incidentally, I've found myself able to sit, or sit with my feet up, for longer without needing a rest although, weirdly, my total time spent resting hasn't changed (which I think must mean I'm sleeping longer, or at least staying in bed longer).
Not a major change, though I've only had the bed tilted for about a month.
I've been taking Bystolic 5 mg for POTS for at least 6 months (and as low as 1.25 mg when I first started it. That was more than 6 months ago I think). For the past month my bed has been raised (I need to go measure how much). I raised it to combat GERD. POTS was an afterthought. (It was worked well for GERD though).
The past week I noticed that my heart rate was too low, and I had to lower my Bystolic dose to 2.5 mg. Keep in mind that dose had been stable for half a year, and I didn't add any other drugs or supplements. I credit elevating the head of the bed for improving my POTS, therefore forcing me to lower my Bystolic dose.
This is a great thing because I think Bystolic (a beta-blocker) was a negative thing overall for my OI. While it improved my vitals on paper and made my GP happy, it made me fatigued. The screwed vitals were a compensatory mechanism I suppose. Of course the beta-blocker would also lower blood volume over time as well.
Interestingly, I feel best with a low HR of 60-80 (not surprising) a moderate diastolic BP (also not surprising), but a HIGH systolic BP of 130-150 (surprising I think, but probably not to many of you).
Unfortunately doctor's can't understand that some people might require different BP's to function optimally.
Two side effects from raising the bed. I have to pee more frequently in the night and when I'm resting in bed, and I dream more vividly.
I'm increasing to 12". I'll post how it goes. It's usually pretty rough the first few nights of an increase, and benefit isn't seen for a couple of weeks. I need to be careful not to take anything that lowers blood pressure or else I'll have to move to the couch for a night or two.
I have been at 12" before, and unlike 8", I never totally got used to it. It always felt odd. But since I have the privilege of being healthy enough to stand that level of elevation, I'm going to give it another go. More is not always better, but I am almost ALWAYS guilty of breaking this rule.
The lifestyle advice for orthostatic intolerance includes raising the head of your bed so that the whole bed is on a tilt. The idea is to both recondition your body and keep fluid in your blood rather than it moving to your bladder and dehydrating you during the night.
Advice varies considerably on how much to raise your bedhead. European Society of Neurology Federation guidelines say 8" to 12". A study on improving orthostatic function in healthy people used 18" and their measures had improved when they were assessed at the end of a week. The benefits are generally supposed to take several days to show up.
If you have both OI and CFS, please take the poll!
[Administrators, can it be made sticky, please? Also, have I messed up so that individual names will be shown in terms of how people vote? Also, I seem somehow not to have this introductory text above the poll, ermm...]
What a great informations! i need to change my bed in order to stop lying down flat, so I wonder what kind of bed would fit the best so that I can raise itin a "whole bed tilt". I wished to read the links in the message, but they arn't working any more, what a pity
My bed head is raised 18 cm, so a bit below 8". I don't have OI, but do have most of its symptoms. I'm not dizzy anymore when I get out of bed and I don't need to pee at night like I used to. Less reflux.