Have Discovered Trend...Compare?

[abetterjulie]

I have been taking Midodrine three times a day (when I am awake enough hours) at 2.5mg. I don't really notice much of anything, other than a pissy attitude as it is nearing time to take it again. I think that is related to feeling tired suddenly, in addition to my pain being back. Anyhoo...I have been having difficulty at night with my BP bottoming out. I have noticed it because I am logging my BP with starting the new medication.

I am lying in bed, which I have done most of the day, and it starts creeping downward from sys 99 to sys 87-92 over the course of 3-4 hours. I get this tingly feeling in my fingers, I feel super tired but can't sleep because I feel like I am slightly suffocating (which is one of my low BP symptoms).

Does anyone else notice the trend of a lower sys BP regardless of position at night? Mine starts to get bad around 11pm. The other night I was up until 3am because every time I laid down, I felt awful. I was SO exhausted, but couldn't fall asleep while upright.

According to my documentation, I average 96/59 throughout the day, but only 89/57 at night. I am using a cool app on my android phone that does the math for me, and an Omron wrist cuff to get the readings themselves. All my readings are taken in the same sitting or reclining position. It won't even read my BP if I am standing as it is too low.

Thanks to all. I really appreciate having this group to exchange ideas and compare notes.

[akavella]

i have been having that same problem. i literally bottom out 71/43 (my old norm was 90/60). i start to feel bad around 6 or 7pm. position doesn't matter. i get extremely nauseated then i know im bottoming out. it is so strange that u say this because i have been telling my doctor and now i am on 10mg tid. i swear it causes rebound hypotension, at least with my body. and i dont notice an increase in bp whatsoever. it wont read either for me when i stand. wow i feel like we are the same person. and a lot of the times i get an error even sitting or lying from being too low. one night i layed in bed for 1 hour with my feet elevated and it finally read 70/41.

do you have any other symptoms...are you aware when your bp is low. sometimes i feel like i am floating its the weirdest thing, almost like an out of body experience except with nausea, feeling like crap and also feel sob and a panicky suffocation feeling as well.

[firewatcher]

Your HR and BP are supposed to drop at night. If it didn't, you'd have bigger problems (autonommic, cardiac and endocrine!) It is a natural, circadian thing and for most people it is healthy...yours just drops too low. If you don't have extreme fluid loss issues, you could keep a bottle of water by your bed and drink when you're feeling "low."

[targs66]

I have had similar problems, but I don't know to what extent they are attributable to the midodrine.

After I started taking midodrine, I started monitoring my BP when I was lying down b/c I thought maybe I'm getting the dreaded "supine hypertension" that it can cause. If I'm flat on my back it's about 85/54, HR around 62 (not that unusual for me) but it was very difficult to get a reading while lying on my right side -- and that's when my heart pounds the most and I feel the worst. Finally got a reading - of 71/42??? This has happened more than once in the past few weeks. I definitely have the exact same feeling as abetterjulie described - being utterly exhausted, but feeling wretched when I lie down, like I'm drowning. (The head of my bed is elevated and I have three pillows, but it doesn't seem to help.)

My very uninformed theory was this - the midodrine has been helpful to me if I am "active" (a short walk or easy housework). I thought maybe I am doing more than before I started the midodrine, even if not by much, but maybe I'm in such bad shape (deconditioned) that when I do these mild activities, my body is very tired and thus can't maintain a normal BP at night(?) I'm trying to take even a very short walk a few times a week to improve conditioning, and see what happens.

Just a thought - hope it's helpful.

[Sarah4444]

I have the same problem. I had read that histamine levels peak around 2-3 a.m., so in my case at least I think it has something to do with naturally lower bp at night combined with mast cell activation. I start to have some difficulty around 11 PM and used to wake up gasping for air around 3 AM, but have been doing much better since starting doxepin 20 mg before bed.

[mwise]

I had to keep trying different combination of things to find a balance for my low bp.

I find keeping water by the bed helps especially if you mix a teaspoon of salt in a pint of water. I wake about every few hours during the night and drink the water sometimes with the salt or without the salt . A bottle of Gatorade or power drink works great too. My bp at night has been up around 90s/70s.

I also take Midodrine 5mg 3xday (last dose at 5pm) along with Mestinon 60mg 3xday (last dose at 9pm). I would ask about uping the Midodrine as initially I was taking 2.5mg and noticed once on 5mg my bp went up another 10 points. You may want to ask to add Mestinon or Florinef which could help in addition to the Midodrine.

I do sleep upright and sometimes sleep with a pillow under my legs to elevate my feet/legs if I am feeling like my bp is really low. I also take B12 sublinqually in the evenings to help with energy.

Hope this helps:)

[abetterjulie]

Unfortunately, I am not supposed to do the salt and water anymore, as it was causing me to swell and wasn't helping with my numbers or symptoms. I am curious about the "rebound" theory. That seems to make sense. Do others get irritable as the Midodrine starts to wear off? I find that everything, even the sound of someone clicking the tv remote, makes me hateful.

I did notice while I was having my testing done that when I tilted my body while supine to one side or the other, my BP dropped even lower. I was actually surprised to see how low it stayed, even while in the supine position. I suppose that no vessel tone would be constant. I was feeling pretty good two weeks ago when I went to the gym every day. The last two weeks have been me in flare, though. I hope I eventually find a balance. I know there are some of us out there who are able to exercise and still function.