For Those On Midodrine -- Input, Please!!!

[Hoosierfan]

I'm in the process of slowly tapering off of Florinef since Sept. (b/c it gives me bad 24 /7 headaches) and we've been pretty successful except that for the last 5 months, my bp tanks about 10 pts and I start to have daily near syncope episodes for the week prior to my period (for which my docs have no answers as to why!). I gave it the "college try" by trying to get through these weeks and get my adrenals to adjust, but this week I threw in the towel....7 days of near syncope I could not take (plus the rest of the day I just feel like crap).

So doc prescribed 2.5 mg Midodrine 3 x daily which we are going to use just during my "witching week" or when I am symptomatic while going off the Florinef (i.e. as needed).

The last 2 days I tried it at 7 am, noon and 4, and my question is this .... is it supposed to work right away once you've taken it (meaning within 1/2 hour or so)? My 7 am dose doesn't seem to do too much...after I'm up and around for 15 minutes or so my bp gets down in the the 80s / low 50s and I feel lightheaded....push through it (or climb back into bed). Then around 11 or so my bp comes up enough and seems stable enough to at least get me vertical (but still slightly dizzy). The afternoon is a bit better...can manage an hour or so of light housework, errands, etc before I need a nap, cook a light dinner and take care of the kids.

What do you guys think? Should the 7 am dose be helping me, and (since it is not), maybe is it too low? Or does Midodrine not work that quickly? I was really hoping this med would work since I can use it on an "as needed"... those that have systemic effects (i.e. Florinef) usually carry a lot of side effects for me and I've gotten none of the Mido side effects so far!

[Wendy C.]

I remember when I first began Midodrine, a 1.25mg dose, it did work within 30 minutes the first 2 days and I was so excited about it. Then, I went for a couple of days where it didn't seem to work at all, then it went back to working again and stabilized after about a week. So, you may just want to give it a few more days. I take 2-3 doses of it now. It does help a lot, like making it easier to stand up longer while drying my hair, etc or doing kitchen stuff, but I wouldn't say it makes me feel back to 'normal.'. Good luck!

[Hoosierfan]

Thanks, Wendy. Yeah, it seemed to work great yesterday, then today not so much. Good to know that can be a pattern.

[rubytuesday]

I take Midodrine 10 mg (when I get up at 6 or 7 in the morning, around noon or 1 and the third dose around 5 or 6 in the evening. I looked it up--says takes about an hour and can last 2-3 more hours to raise standing BP. I notice it makes my scalp a little tingly. When they tried Mestinon with me, (I was also taking the Midodrine at the time), my cardiac specialist in dysautonomia told me if I would be doing something that might trigger a faint (i.e. going to church, or if I started to feel the sensation of syncope) to pop a Mestinon--that the Mestinon would begin working within 15 minutes. I couldn't tolerate the Mestinon and I usually didn't have 15 min. to spare once symptoms of faint would begin.

[Libby]

Midodrine. It's the only thing that has ever stopped my vision from going black when I stand up.

I take a 5mg dose when I wake up, around 6:30. It's pretty immediate; within 10-20 minutes, I can feel it kick in. I used to get the tingling scalp as a signal, but that seems to have worn off (I wish it hadn't! I liked it ). I usually just take the one dose, because I don't love the pressure that builds up in my head if I pop another. But I'll take one if my vision starts to tunnel too badly in the afternoon. That takes effect almost immediately as well.

I'd suspect that you're on too low of a dose, if you're not feeling the effects of it after your 7am pill. I was on 2.5, 5 and 7.5mg at different points, and it was really easy for me to tell where my dosage should be. Kind of like Goldilocks . 2.5 I felt okay, 5 I felt relatively good, 7.5 I felt like someone was squeezing my head the entire day. You might want to talk to your doc about trying something higher.

[Hoosierfan]

Thanks for the suggestions, guys. Unfortunately I got some not so fun side effects from the small dose -- lots of insomnia the past 3 nights and nausea each morning (boo). Today I've just taken one morning dose and I'll see if one dose instead of three over the day helps with those two side effects -- I seem to really only need it in the a.m. and during my "witching week." Still would like an answer to why my bp tanks that week, but so far the research is slow.

Maybe when next month comes along I'll suggest to my doc that we try 5 mg in the a.m., and just taking once a day so as to avoid the side effects.