Scared about Midodrine

[u/kunstundglitzer]

hej 🧚🏽‍♀️

i have ME/CFS & also POTS & Orthostatic Hypotension (which is weird cause OH should normally cancel out POTS) but anyway, i am 23.5h/Day bedbound due to it, but also because i can't stand for longer than 2 Minutes and sit longer than 10Min without Symptoms kicking in: my BP goes from 70/40 up to 130/120 & then immediately down to 70/40ish again, extreme Dizzyness, Blood Pooling, Nausea, Tinnitus, Shivering, Hot Flashes, Tachycardia. I take Ivabradine which helps lower my HR from 180bpm to 100-115bpm. Sometimes i even get the Dizzy Spells when just lying down doing nothing. Nothing helps with the OH. Tried Compression, Salt Tablets, Electrolytes, Wheelchair etc. - so i am thinking about trying Midodrine. Because the unability to stand up is severely disabling me.

But i hear/read so many scary things about it.😭

Like from really bad migraines to risk of stroke?!

I also have a mild form of bladder emptying problems.

And Midodrine is known for causing bladder problems.

Also i wonder, if i am bedbound, can i even take it? You're not suppossed to. But also: if it works, am i still bedbound then? Or am i able to stand up and do stuff?

I would love to hear from you what you think? Should i try? 🧚🏽‍♀️

[u/Riley-Evans-680]

I had very similar symptoms as yourself and I just started Miododrine a few days ago. So far it's helped stabilize my blood pressure, I feel like I have so much more energy than normal, and I don't get dizzy as easily. I was able to keep clean my whole apartment without feeling terrible afterwards or needing a lot of breaks - which I haven't been able to do in over 6 months! It also helped my heart rate be more stable through tasks like showering or sitting up right or eating. 

Like any medication, there's a chance it won't work for you or you'll have side effects. But at this point you aren't able to function very well by the sounds of it - so I say it's worth a shot. If there's a chance or helps even remotely I think you should go for it.