Jacquie802 Posted December 1, 2011 Report Share Posted December 1, 2011 Hi there,For the past week or so it seems as though my symptoms have "reared their ugly head." The mornings have always been bad for me, but this past week after I nap or wake up from sleeping overnight I can barely get out of bed. I feel like I am going to pass out, and this is before I even try to sit up. I've talked to my doctors about this, and they have told me that my bp would not be dropping while I'm laying down, however, I can't think of anything to explain this. I have tried to Florinef, salt loading, and presently the Midodrine (2.5mg 3-4 times per day)-the salt loading had no noticeable effects (however, I still try to eat salty foods), the Florinef gave me horrible migraines, and it seems as though the Midodrine is starting to do the same thing. I am at wits end, and unsure where to go from here . Also, once I do try to sit up my heart rate jumps, I start sweating, and the lightheadedness gets a lot worse. Just feeling depressed and helpless lately...Thank you in advance for reading and any advice.Jacquie Quote Link to comment Share on other sites More sharing options...
Jacquie802 Posted December 1, 2011 Author Report Share Posted December 1, 2011 **Also, I seem to have been headaches often, especially after waking up feeling cruddy... Quote Link to comment Share on other sites More sharing options...
julieph85 Posted December 1, 2011 Report Share Posted December 1, 2011 Jacquie, everyones blood pressure gets low at night when they are sleeping because of increased parasympathetic tone (unless you have PAF, which it would then be high) If you have dysautonomia it will sometimes go too low which is what happens to me. My neuro said he has several patients that actually faint while lying down because their blood pressure drops so low. Most of us on here feel terrible after waking up because of the low blood pressure, i'm surprised your doctor told you that because everything i have ever heard is that all blood pressure drops when sleeping but our goes abnormally low. Have you tried taking your blood pressure as soon as you wake up to see if it's low? Quote Link to comment Share on other sites More sharing options...
Jacquie802 Posted December 1, 2011 Author Report Share Posted December 1, 2011 Hi Julie,Thank you for the reply . Unfortunately, I cannot afford a bp cuff-my neuro wanted me to get a bp cuff that goes on your upper arm; they are soo expensive! Looks like I'll be making a neuro. appointment tomorrow . Quote Link to comment Share on other sites More sharing options...
Annaliese Posted December 1, 2011 Report Share Posted December 1, 2011 My bp goes really low at night such that my arms and legs freeze and get pins and needles. I also have episodes of tachy which i think is becuse of the low bp. Since getting ill my bp has always been the lowest whilst lying. I stopped taking beta blockers at night and these problems reduced. Quote Link to comment Share on other sites More sharing options...
julieph85 Posted December 1, 2011 Report Share Posted December 1, 2011 Annaliese- like we talked about before.... the exact same thing happens to me Quote Link to comment Share on other sites More sharing options...
icesktr189 Posted December 1, 2011 Report Share Posted December 1, 2011 Yes, believe it or not I have actually passed out laying down. I was preggo at the time, but my POTS was terrible. For me, my hr drops in the 20's to 30's when I sleep and I feel terrible when I wake up. Quote Link to comment Share on other sites More sharing options...
Jacquie802 Posted December 6, 2011 Author Report Share Posted December 6, 2011 Dani,Waking up is the worst for me lately. I actually feel like I'm going to faint when I wake up in the morning-this is before I even try to sit up . Is there anything you have found that helps?? Quote Link to comment Share on other sites More sharing options...
icesktr189 Posted December 6, 2011 Report Share Posted December 6, 2011 Midodrine, compression stalkings and TONS of water before I get up. Havey you tried SSRS? Also, I cant take midodrine if I have already got up. It has to be before I get out of bed or my bp will drop and then increase with midodrine and i will get a migraine from the fluctations. Quote Link to comment Share on other sites More sharing options...
Libby Posted December 6, 2011 Report Share Posted December 6, 2011 Jacquie, I know that some people raise the head of the their bed 6 or so inches or prop themselves up with pillows to keep their bp from dropping in the night. Doesn't sound very comfortable to me, but maybe it's worth a try? Quote Link to comment Share on other sites More sharing options...
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