Balancing Midodrine

[roxie]

So, I've started Midodrine again and it's kindof a struggle for me.

Last time I was on it, it caused hbp and my dr took me off it.

I'm seeing a specialist now & he says I really need midodrine.

The struggles with bp are hard on me but I'm giving it a try. 

He's titrating me, I'm on just one pill in the AM. I am making sure that I sit up but my bp is slightly high, like 130/95.  I'm trying not to worry and giving it a fair shot. 

I do spend a lot of time laying down & resting, every time I move I get dizzy & nauseas even if my bp doesn't plummet.   I am wondering if with midodrine I HAVE to get up and move A LOt more to stop hbp. Like maybe just sitting up is almost as and as laying down, does that make sense?

What i'm  struggling with is how to do enough without overdoing it and crashing. I'm confused.

Those on midodrine, what did you change or do when you once you started it?

[Guest Alex]

Hi there,

i only took midodrine for about 3 weeks - side effects were bad enough for my dr to decide it's not the drug for me.

What i did differently while on midodrine - i tried to spend more time sitting and standing, I took naps sitting (not comfortable at all, but i was too exhausted to stay awake), and i never took it 4-5 hours before bed time.

I did have a couple of nasty spikes in bp and heart rate but it might have been the combo midodrine + florinef that have caused them.

I used to take it 3x a day - can't remember the exact amounts, but I might have taken 15 mg in the morning, then 10 mg at noon and 5 mg in the afternoon (again, I'm not 100% sure of that).

Definitely lying down is a no-no while on midodrine.

i hope this helps.

Good luck

Alex

[ramakentesh]

I cant really help because I didnt get any real benefit from midodrine in my case. Infact when i took it felt worse for a while and it ramped up the sympathetic drive beyond what was comfortable.

[Hope]

I have started, stopped, and restarted Midodrine. I was started on 2.5mg tabs 3 times a day. I never got up to that dose though. One in the morning was plenty for me. Then I fugured out over the course of a month I have low blood pressure times and some not so low pressure times. In addition to getting some higher blood pressure times like 145/95 where I didn't need it, I was getting chest tightness taking just one whole one everyday. My primary said to knock down the dose, so I now take 1/2 a pill most mornings and I experience no chest tightness. I don't take it if my blood pressure is high enough to be in the normal range, but those days I check my blood pressure often to make sure it's still staying up in a good range.

Also, anytime I am restarting or uping my dose on any of my meds, I get the dizzies. One more thing. When taking the midodrine I do need to get up and around (even if it's just a lap around the kitchen), or it does seem to get my blood pressure up kinda high. I don't know if any of that helps...

[mwise]

For me, Midodrine has been a God sent. The benefits out weight the side effects of itchy head, skin crawling, feeling cold and urinary frequency. I take 10mg 3-4xday whether I am lying or sitting down. Without it, i would not be able to stand or walk. My bp on it even standing after 3 minutes is only 80-90/50-60. I get about 4-41/2 hours on each dose. I can tell when it wears off because I get weak and need to sit down right away when i stand or I will be on the floor. I wish I could only take one dose, but unfortunately need 3-4 a day to keep going. When I am not on it, I hydrate like crazy with salt water, coffee, etc...to get my bp up. The hydration gets me short distances in the house, but once I get the Midodrine in me and it starts working by me feeling the side effects, I can walk, do things and work my full time job out of the house. Good luck and I hope it will help you.

[roxie]

Thank you, things are a little better today. It didn't hit with a bang like it has the past few days. I've been trying to walk around a little more, like every 30-60 mins and I'm exhausted BUT my bp is a little better, only upper 80s when it was at its peak in my system.

Also, I'm noticing this tight, pinching feeling in my arms & sometimes me legs like I was sitting on it or something?

[jenglynn]

I take Midodrine and have been for 7 months now. I take 15 mg 3x a day. The main side effects are the scalp itching, tingling, feeling freezing.... I guess I'm "lucky" because I have urinary problems and have urinary retention- so the Midodrine doesn't change that. I wish it would. Although I know that I've had urinary frequency before and that isn't any better. I thought the side effects would last forever because after 6 months they hadn't changed a bit. But I don't know if I'm just getting used to it or they are not as severe.

I wish I could say this a my "Miracle Drug and Cure"- it isn't. I took it with Florinef and I had to stop the Florinef because I'd get these headaches and head pressure that were not in any way tolerable. I really tried. I've tried other drugs as well like Mestonin but that turned me into Wicked Witch and just not for me. Midodrine is pretty much the difference from me having NO BP (okay, slight exaggeration) and being able to hold my head up. I'm lucky to have a 50/30 BP on Midodrine but without I have no idea what it is- I can't get a reading on it- I can't even sit upright for 30-60 seconds let alone be upright. So I don't even know if I could say that it "works" but it keeps me awake so I can talk to my family but hardly what I'd call a very good quality of life. So, I keep taking it. I always wonder though - when am I going see one of the class action lawsuit commercials for it?? "Have you or any of your family members taken Midodrine and now suffer the following side effects: yada yada yada.".

Jen