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Why Is My Blood Pressure So Low When I First Get Out Of Bed?


rubytuesday
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This morning I found myself staggering from bedroom to living room to turn light on, then on to kitchen to turn light and coffee on when things start to go dark--the near syncope (close call this morn) BP 68/38. I had to call my DM to come stay with me one Sat. as when I got up with headache (later turned to migraine), BP was 75/44 and DH was on trip. I hadn't been up long at all and was prepping a dish for Christmas when I turn to throw something away--staggered and passed out. I printed off my BP graph to take to my cardiology follow-up and noticed that the times it seems to be lowest in the day (unless for some reason I have an episode) is first thing when I get up. I have had a few times in my sleep where the bed including my pillow is just saturated from an episode of profuse sweat (not typlical for me). Now I am wondering if my BP went too low in my sleep when that happens.

Anybody else like this? (my endocrine system is fine).

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My BP is always at its lowest in the morning. My numbers sound much like yours. I can't remember if you're on any BP meds, but I just make sure I drink a lot of Gatorade and have my meds before I get up- or like you I'd be falling to the floor. I can't tell you how many syncope episodes I've had getting out of bed first thing in the morning before I started that regimen. It still happens, but much less often- probably decreased by 50% or more at least.

If I were to just get out of bed immediately I would be unconscious on the floor every time. I am so ready or a cure for this! I hope you start feeling better. I know how awful it is to live like that. Glad you are getting some follow up!! Be very careful in the mornings so you don't hurt yourself!

Jen

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Hi Ruby, my BP is very low like that when I first wake up and I often wake up drenched in sweat as well. You described the difficulty of my mornings of stumbling around perfectly too... I think it's somewhat 'normal' for BP to be lower when we sleep, but I would guess that ours is lower to the point of causing our symptoms. I'd like to get some additional testing done to help me figure out these symptoms a bit better. I'd be very interested in hearing what you find out--good luck following up with your cardiologist!

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I saw my cardiologist in follow-up today (last saw him early Dec). He had intern with him. I gave him my graph of the BP's/near syncope and syncopal events and updated him about the IV Ig, the vocal cord dysfunction (also seen in EDS--and showed shiney/cold hands/fingers and told them feet were like that too and that otolaryngologist who'd scoped me put me on Rx used for Sjorgrens and scleroderma) and updated that I'd seen hemeoncologist for the Delta Granule Storage Pool Def. and that that phys. mentioned it is also seen in EDS ('both rare'). I'd told him that I'd been reading Prof. Rodney Grahame's literature after hemeoncologist mentioned this and found that his research supported that. My cardiologist said--'yes--I've been looking into EDS' (YEA). Anyway, I told him that it seems to me that my BP is running lowest in the morning. I told him I'm doing recumbent bike and Rx nutritional sustanance but worry if I burn too many calories, I don't want more wt. loss so I keep it to 20-25 min (before POTS I rode regular bike 10 miles/day--about 50 min).

He asks me about the cardiac specialist and I reminded him about how it took them about 1 month to call me back with instructions to stop the med that was causing such terrible abdominal cramps and vomiting. I reminded him of his goal to get me hypertensive then treat the hypertension. I told him that the specialist's PA said they would let the Mestinon get out of my system then start me on something else (over 2 mos. ago and no call back). He told me he was looking at a list of meds I could use with the Midodrine. He said he has never used any of these, but he knows they do use them at UTMC (where my specialist is). He asked if it was okay for him to look into those (also asked for hematologist/immunologist's names). I gave him their cards (to copy) that I carry with me. I'd told him that hemeoncologist told me I must wear medic bracelet and showed him I was (and that must have platelets before even having tooth extraction as I felt he should know in the event I had to undergo any cardiac procedure). I go back in a month but anticipate a call from his nurse once he studies/gathers the info he needs.

I just feel so blessed (how many doctors would learn/study us). The resident asked me how I kept track of all that (I forgot to show him the Care Medical bracelet--how it inserts into computer port and has all the relevant info and contact info on it) but I smiled and said 'you learn to try to keep these things made known when you're a zebra'. My cardiologist smiled and said or a 'fascinoma'. (I'd not heard that one).

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In just about everyone*, bp dips at night when you sleep. Mine also dips well into the 70s/30s territory at night. I know I'm very difficult to wake, and from my hospital charts + bp monitoring, I've assumed it was due to low bp/lack of perfusion to my brain.

I also can fully sympathise with having a rough time when waking up and for a little while after. Getting up in the middle of the night is hit or miss. I also sometimes will wake up and pass out immediately when I try to sit up. As a result, I put my helmet on before I go to bed (if I'm not already wearing it because I'm dizzy or exhausted) and don't usually take it off until a little while after I shower. According to my doctors, my brain shrunk from my hardcore anorexic days, so there's more fluid space than there should be, and I'm at a much higher risk of concussions/dain bramage from head impacts. I've already had enough dain bramage and can't afford more. Uncomfortable at times, but so far it has been effective -- no concussions.

*The only exception I'm aware of are severely anorexic patients. I'd assume their bp and hr are just barely adequate for life, thus the body doesn't even try to go lower.

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