JuliaMaple

Hey there everyone! I have been thinking about trying compression socks for my low blood pressure, and against blood pressure drops when standing (and POTS). The doctor did not advice it, but I read in lots of places that its helping people. So trying cannot do a lot of harm right? I was wondering what kind of compression stockings/socks/pants etc you guys use, and which type works the best for you? I was wondering if the socks are helpful, or is it simply not high enough? And another question. My doctor did advice me to elevate my bed (upper body) when sleeping, so that I do not sleep flat anymore. I did not do that yet because its not possible with our bed. So I was thinking about using lots of pillows to sleep with my head lifted up higher. I was wondering about how high I should sleep, I have no idea. And.. did it make a difference for you? Much thanks in advance.

Before I reply to everyone I will give a small update about the Mestinon. Its negative effect seemed to lessen the last few days, I had started taking it in the early evenings instead of the mornings, so that the side effects would not mess with my day too much. Today though, I started to slowly move it to an earlier spot on the day again because that is what the bottle says I should be doing (taking it in the morning). Today it gave me side effects again, one was a bit scary. The sides of the tongue became very numb and sedated. When I spoke, I could not pronounce words normally because my tongue did not move right. Kind of partly paralyzed on the sides. I also had a numb feeling in my throat and lips. I was a bit afraid that they would swell, it felt as if my tongue was thick. Not sure if it really was, but it felt that way. It slowly wore off after a while. So, I am better now. But tomorrow I have to take it again and I a bit worried about doing that. --- @SarahA33 Thanks for your reply! It seems that I do have a lot of paradoxical effects when it comes to blood pressure medications. I wonder how and why that happens. Wish the doctor would be a bit more open and explain to me what he is thinking. My electrolytes where checked, and they where alright (two weeks ago). Adrenaline/norepinephrine where not checked, I wish they would, because I have wondered about that often. Also about cortisol. Northera sounds really interesting! I will see if I can find out if we have it here in my country as well. I wonder if that one could work. Your reply is very helpful! No need (at all) to say sorry for trying to help. Your post was very informative! And it definitely also helps when people think with me together. It gives more insight. @KiminOrlandoThank you for your answer :). Like Sarah you also mention Northera in a positive light, it sounds even more interesting now. I will mention if to my doctor if he is open to suggestions/ideas like that. I do hope I will find something that helps. It especially depends on how long the doctor is willing to try, and how many ideas he has. If he gives up, I would not know where else to go anymore. He is a good one, so I am always scared of the day where he will give up on me. @targs66 Thanks for your reply as well. That sounds like it could make sense when it is tied to adrenal problems. But not sure of course. As if your body can create the surge that is needed, when medication is pushing for it, but cannot sustain at all. Do you also have low blood pressure and low heart rate? (if I may ask).

Hey there everyone, I am pretty new here, but hope that its ok that I ask my weird/complicated question here. It is about my problems with low blood pressure and the medications that we (me and my neurologist) are trying. At the moment I only have fludrocortison as a standard medciation that works, I take it three times a day (62,5). My most obvious problems at the moment are: - Low blood pressure, we can't get it to go up most of the time - Very narrow pulse pressure - POTS - Combined with bradycardia when sitting/resting. - and often orthostatic hypotension. I got diagnosed with POTS, but that is just what happened during the tilt table test, at home I have seen my blood pressure dropping as well, so I think I appear to have both. The diagnosis is POTS, but the doctor is still unsure, and does not say a lot about what causes my problems. So its still a search. I take Fludrocortison, which has made my blood pressure generally a bit higher, and the pulse pressure (which was really narrow) has widened. Pulse pressure is now good, but blood pressure stays too low and I still have lots of symptoms because of that. Heart rate is still low as well. Now here comes my question: We tried midodrine to upp the blood pressure, which gave a really odd result. It lowered my blood pressure. The doctor did not believe that it lowered my blood pressure, but I have seen it lots of times. I measured every day. It went lower, without a doubt. Also my supine systolic pressure went down about 10 points. Can anyone explain this? Did others experience this effect? What mechanism causes it? My second question is: We tried Mestinon (pyridostigmine) after that. I am still in the middle of that trail, I take 120 mg in the morning. It is supposed to make symtoms like weakness etc less, and it should make orthostatic hypotension less. But, again.. it got worse. I did a couple of standing tests at home, 1 hour after taking mestinon. My orthostatic hypotension is now more dramatic. My blood pressure lowers more quickly, and more severe. I cannot stand for 4 minutes now. The last time I measured while standing 4 minutes my bp was 67/37 (heart 72) which meant a fainting episode. Can anyone explain this? Normally this drug makes orthostatic blood pressure better, but when I take it, it makes it worse, like with midodrine. Mestinon also makes me dramaticly drowsy, I feel stoned (without the happy part), and sleepy, dizzy and vague. Even more then usual. It lowers my heart rate as well. Does anyone have any thoughts about how a vasoconstricting effect, can 'lower' blood pressure. I cannot find any logic in that, and understand why the doctor did not believe it. I have seen it many times though, so I am sure that this is what it did. I was thinking that the solution to that might give insight to my real problem. The real issue that causes my blood pressure to be so weak. Sorry for the long post. I have a hard time explaining it with less words and maybe I am a bit desperate.