Yolaclover Posted April 22, 2011 Report Share Posted April 22, 2011 Ok, I sleep on a lot of pillows and I take a 1mg salt pill before bed, but now that I'm off florinef my worst demon has returned, the dreaded low BP at night. I felt horrible last night at 90/52. What can I do to make sleep time a bit more bearable until I go to the Dr. on May 10th?Thanks!!!!! Quote Link to comment Share on other sites More sharing options...
potsgirl Posted April 22, 2011 Report Share Posted April 22, 2011 Why are you off of Florinef? Do you have your bed raised 4-6"? I do that and sleep with two pillows. I hate to say this, but your doctor may not be too concerned about your BP, because 90/52 is on the low side of "normal". What effects are you having at night that keep you from sleeping? Also, are you taking plenty of fluids with you 1 mg of salt at night? I can't take salt at night because I have to get up several times a night to urinate. I really hope you figure out something that works for you, and to some people, a BP of 90/52 can make them feel miserable; where as others (including me) get down to 72/60 and feel crappy, but not terrible. Unfortunately, I can't tolerate Florinef or Midodrine. Good luck, and I'd be interested to know your answers to my questions, if you don't mind. Perhaps we can all help you more if we knew more about your side effects, etc.Cheers,Jana Quote Link to comment Share on other sites More sharing options...
shoegal Posted April 22, 2011 Report Share Posted April 22, 2011 90/52 is good for me, funny how different we all are! Quote Link to comment Share on other sites More sharing options...
Yolaclover Posted April 23, 2011 Author Report Share Posted April 23, 2011 I have been lower than that, way lower, but I was taken off florinef because my pressures were good when I titrated off my florinef, I was averaging 110/65 then. Now that I am a few weeks off florinef my pressures are getting lower, at my worst I was 70/40 or lower! I think my pressure gets low and I sort of panic (you know when yr pressure is so low and how horrible that feels) and it shoots up to 90/50 by the time I get my monitor on. But so far my dr. Is satisfied with my blood pressures and would rather not put me back on florinef. Quote Link to comment Share on other sites More sharing options...
shoegal Posted April 23, 2011 Report Share Posted April 23, 2011 I have been lower than that, way lower, but I was taken off florinef because my pressures were good when I titrated off my florinef, I was averaging 110/65 then. Now that I am a few weeks off florinef my pressures are getting lower, at my worst I was 70/40 or lower! I think my pressure gets low and I sort of panic (you know when yr pressure is so low and how horrible that feels) and it shoots up to 90/50 by the time I get my monitor on. But so far my dr. Is satisfied with my blood pressures and would rather not put me back on florinef.how do you function? I hate it when mine is so low! Quote Link to comment Share on other sites More sharing options...
Yolaclover Posted April 23, 2011 Author Report Share Posted April 23, 2011 When it was low like that didn't function, I was terrified I would be put in a nursing home! Fortunately I saw a cardiologist who realized that was too low and he put me on midodrine and then florinef. I had 6 months with the 70/40 and lower pressures. It was hellacious. Quote Link to comment Share on other sites More sharing options...
Friedbrain Posted April 23, 2011 Report Share Posted April 23, 2011 Well, I don't have answers because I have similar problems at night. I raise my head, and I do arm exercises to "jumpstart" my system. But as for what blood pressure works and doesn't work.....I can say that the same blood pressure during the daytime, 90/60, will work for me most times but give me a little stress and I'm ready to pass out at the same bp. Don't know why.What problems do you have at night? Most of my problems are at night, and I'm still trying to figure out if they're due to the drop in bp. Quote Link to comment Share on other sites More sharing options...
Yolaclover Posted April 23, 2011 Author Report Share Posted April 23, 2011 At night my sxs kick in when I get up out of bed, it could be to go to the bathroom or one of my two toddlers needs me, I lie back down and after about 3-5 min I get very lightheaded. Particularly on my left side. I get a lot of pins and needles and visual disturbances. Some nights I am able to get through with hardly any sxs , on florinef I did very well at night. Maybe I should use a nicotine patch at night! Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted April 23, 2011 Report Share Posted April 23, 2011 I dunno, I am in the same boat as you. My blood pressure gets very low at night too-lowest I measured was around 74/39. The last Doctor I saw had a hard time "hearing" my blood pressure (however that works) and so concluded my BP monitor must not be able to "find" my blood pressure and concluded the readings must be incorrect. Simply put he didn't believe it. I argued with him ...to no avail. Have you checked your BP when you first wake up before getting out of bed? Mine is low like 80/40 and then picks up once I get up and especially after having my much needed coffee. It stays low 90's/low 100's all day, then drops again at night. I have been taking the salt at night for a week.. so far no change. Maybe raising the bed would help? I might try it.POTSGIRL -- why do you say you can't take salt at night because you have to urinate? I thought the salt helped us hold on to fluid? I have the nighttime urination problem too. Quote Link to comment Share on other sites More sharing options...
Yolaclover Posted April 23, 2011 Author Report Share Posted April 23, 2011 I take my BP once at night and once in the day time when I wake up and I'm still in bed, the reading used to be very low in bed before I got out, but now, 1 yr since I was diagnosed, they have improved greatly, which is awesome! I find my lowest numbers occur btwn 2-5am. I do feel fluctuation during the day and I will usually have a low diastolic reading when that happens, but they don't bother me the way those super low spells do when I'm in bed.I do not have a lot of the sxs I had when this first started. I had intense head pressure, I had horrible "hanger pain", I had blurry vision when the pain and pressure was bad, I had nausea, vomiting, diarrhea, my face was colorless. when m,y pressure was mega low I'd feel like my throat was closing and my hands would be all pins and needles, my tongue too. I had a hard time writing and sitting for periods longer than 10min. most of these sxs are gone or rare for me now.I am improving and trying to stay as healthy as I can because I work full time and I have two kids, I will visit the NYU dysautonomia lab in May and I hope to update my diagnosis and see what is the status of my POTS. I think a low dose of florinef would do wonders!Thanks so much for replying, it means a lot to me.C Quote Link to comment Share on other sites More sharing options...
potsgirl Posted April 23, 2011 Report Share Posted April 23, 2011 Naomi,I can't take much salt at night because I have to drink so much water with it! How about you?Cheers,Jana Quote Link to comment Share on other sites More sharing options...
Yolaclover Posted April 23, 2011 Author Report Share Posted April 23, 2011 I drink water with it but not a ton Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted April 23, 2011 Report Share Posted April 23, 2011 Jana -- oh wait, we're supposed to drink lots of water if we take salt? Uh oh. lol. I just take the pill with maybe a quarter of a bottle at around 7pm. I figured the salt would help hold onto whatever fluid is in my system. Is what I'm doing dangerous at all? It's really HARD for me to drink at all. It's like trying to eat when you're really full... I literally have to force myself to drink. By nighttime I get thirsty -- probably 'cause my body is going um hello, I'm getting dehydrated here. It's just odd because most POTS people here talk about being very thirsty all the time. Quote Link to comment Share on other sites More sharing options...
Friedbrain Posted April 23, 2011 Report Share Posted April 23, 2011 I find my lowest numbers occur btwn 2-5am. I haven't been ambitious enough to take my bp in the middle of the night on a routine basis, but I did research that uncovered what I'd suspected-that bp does have a dip around that exact timeframe (which is usually when my nocturnal seizures and shaking spells were). I was working from an hypothesis that my seizures (and shaking spells) were maybe caused by my body going into some kind of shock-not getting enough blood initiates a big boost of adrenaline which overstimulates my poor unstable brain (estrogen>progesterone, see my other post about hormones) and blammo. Actually, and I can't find it right now, but I found a study that showed that bp dipped even lower at night and that supported my hypothesis that my bp may dip even *lower* at the end of my cycle, such that maybe my bp bottoms out during that time triggering the adrenaline that then overstimulates my vulnerable head. A chain of bad events.... Complicated, I know, but it's probably not something simple, or it would happen to a lot of people. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted April 24, 2011 Report Share Posted April 24, 2011 Butchers broom worked for me at one stage overnight without pushing me too high. Quote Link to comment Share on other sites More sharing options...
shoegal Posted May 10, 2011 Report Share Posted May 10, 2011 where do you get salt pills? the low BP is driving me batty Quote Link to comment Share on other sites More sharing options...
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