Midodrine Update

[mkoven]

So I took my first dose of midodrine about an hour and a half ago. I felt some weird scalp tingling at first, a weird rush, a chill type wave intermittently and a little racey. A little hard to focus. Some head pounding.

But my bp so far is around 110/75, pulse 70 something. i didn't like the initial surge, but I feel much less faint/short of breath/chest tight than I have in days. I even feel like I could go to the store now, and not want to come crashing down. And this is with a teensy dose of 2.5 mgs.

thanks to everyone for your input. I don't know if this is my answer, but it's seems somewhat helpful, despite a little weirdness. I have my doc's blessing to try this on an as-needed basis. I hope I won't need it too much, but here's to some improvement.

[MightyMouse]

That scalp tingling stuck with me for all the years I took midodrine.

Nina

[Steve]

Is Midodrine prescribed to those who have POTS without orthostatic hypotension? My blood pressure only drops immediately upon standing, and rarely below 100 from what I can tell. Within a minute my systolic pressure is usually normal, and my diastolic pressure actually climbs from 75 to 90-100 over time. I'm afraid that Midodrine would cause me to have hypertension.

[flop]

Midodrine is helpful if you have a persistently low blood pressure whilst upright. It works by constricting blood vessels which reduces blood pooling, increases vascular resistance and thus raises the blood pressure. It is not a magic pill for all POTS patients but if you had low blood pressure all the time it would be a medication to discuss with your doctor.

Flop

[mkoven]

It's too early for me to tell, so please, other folks, chime in. It actually seemed like my bp was surprisingly stable on that dose. I was worried, because my bp was swinging from 80/40- 140/90 without midodrine, that the midodrine would swing it too high. But in part, maybe????, because my high swings are my body's desperate attempt to correct the low bp, if my bp never went too low, it didn't need to swing up. I didn't get over 120/70, and mostly hovered around 110/70, hr 70.

After the dose wore off, I did swing low--81/40, sitting, which I didn't like.

Again-- just my first attempt, but will report on future attempts. It would be nice to have this in my arsenal, if I can get used to the creepy surge feeling.

[MightyMouse]

Michele,

I, too, had huge blood pressure swings low first then high. The midodrine, combined with florinef at .1 mg, was incredibly helpful for me. And, I always knew when it was kicking in b/c I got the scalp tingling/goosebumps first then all over goosebumps. After that, i would feel pretty human for at least an hour even with the persistent tingles.

Nina

[mkoven]

Hi Nina,

Do you mind if I ask what brought you to discontinue the midodrine/florinef combo?

Michele

[Lenna]

mkoven, What dose are you taking?

My son, who has POTS, started on Midodrine two and a half weeks ago. He had goose bumps and scalp chills for a few days. Then they went away and I don't think it bothers him much anymore. He started on 5 mg. 3x/day for a week, then we upped it to 10 mg. 3x/day. He's also on .1 mg Florinef 1x/day. Initially he had a really noticeable surge of energy that lasted for a few days. Then he started feeling poorly again but when we increased the Midodrine dosage to 10 mg., he had another huge surge of energy. He may have overdone his activities at that point, because a couple of days later he CRASHED. It took 5 days, but he's starting to feel a little better again.

By the way, my son's bp is stable - not much difference between supine and standing. His heartrate races when he stands. The doctor said he's not too concerned about his bp going too high with the midodrine because my son is 15 years old, and that's not so much of an issue with kids. We were just warned not to give him a dose less than 4 hours before bedtime.

Hope that helps. Let's stay in touch about the Midodrine because I'd love to know how other people are doing with it.

Lenna

[mkoven]

I'm starting with 2.5 mgs. I'm very sensitive to meds, so I always start with very tiny doses. I'm older than your son--almost 41, so I don't need to get high bp. I also have ehlers-danlos, a collagen defect that causes tissue fragility. I've been told that I want to avoid actual high blood pressure, as that's bad for my blood vessels too. I don't have actual aneurysms, but several infundibula in my brain---slight dilations of vessels--so easy does it, I guess.

[MightyMouse]

I went off florinef in order to get some testing done. When we went to restart it after the testing, it shot my baseline bp way too high.

Because of the high bp we also decided to discontinue to the midodrine too in lieu of an SSRI. I had been on anywhere from 2.5 to 12.5 mg of midordrine every 4 hours while awake. The low dose SSRI which seemed to do what florinef used to do for me and I didn't really need the midodrine at that point. However, now a good 7 or 8 years later, I may need midodrine again b/c I've been having some low bp days. We'll see... BTW, I had also been on cozaar to stabilize my bp for about 2 years, but have ceased taking it. We retried a few weeks ago, but it made my baseline so low that I was nonfunctional.

Nina

[mkoven]

Thanks, Nina!

It's amazing what a tightrope/delicate balance all this is-- and that something that worked at one time becomes problematic later.

So far I've developed allergies (hives) or twitches on the various ssris and snris I've tried.

Beta-blockers are out because of history of allergies and anaphylaxis.

I've heard florinef can still be bad for bones (though less than prednisone), so I'd prefer to hold off. I suppose it's a possibility. I already have some bone issues.

I hope the midodrine works for me without too many issues. I hope I can get back to my baseline soon, where stockings, salt, and fluids are enough. Not there yet though.

[mkoven]

So I wondered how midodrine would affect my ability to exercise and my post-exercise symptoms.

Until my recent flare, I'd been able to walk for around 30 minutes at a time, with breaks to squirm joints around. It had taken a while to get to that point, but I was pleased that I'd worked up to that.

However, since my recent flare, I've barely been able to handle the five minute walk from my office to the main department office, without feeling awful.

So after this afternoon's dose, after confirming that vitals were reasonable, I went on a 20 minute walk in the snow-- so actually a little more strenuous than usual, as you have to step through snow drifts.

I felt pretty much okay during-- tiny headache twinges. I measured my vitals when I got in: BP139/107, hr 102, right after stopping. I waited fifteen minutes and remeasured: 118/76, 78. I felt a little bit woozy, but NOTHING like without midodrine. Will check again periodically, this may not be the final word-- but if this lets me be more active, great!

It feels so strange to be taking something to raise bp and constrict vessels, when most of the health talk out there is about the reverse. And as a 40+, non-athletic, non-slender person, it's a little hard to believe that may be what I need these days. Just want to make sure I really do tolerate and need the treatment, it really helps, and doesn't make anything else worse-- and that this really is the most conservative, reasonable treatment at the moment.

[mkoven]

Still pleased to report that midodrine 2.5 is helping pull me out of my afternoon bp slumps and swings. Afternoons are bad, and I was taking a nosedive. And then my bp is all over the map-- high and low. I took midodrine, and it seems to eliminate the highs and lows, and just keeps me even, so far. Which also helps my stress-level, because I really can't handle the stress of feeling I'm on the verge of going down, and the adrenaline surges as I recover. If I go through that cycle too many times, it seems like it aggravates everything.

I wish I didn't need it at all and don't know why I'm having more problems now. But in the interim, yay to something that helps.

[lalalisa]

Hello,

I'm glad to hear that you are having good results from Midodrine. That's wonderful!

I'm also on it and could barely leave the house without it. After being on it for 5 years now i'm used to the chills/tingles and I even appreciate the fact that I know it's "kicking in" when I feel goosebumps. Although I do get goosebumps on my face and that feels really weird!

Thanks for letting us know how you're doing.

Lisa

[Donna F]

Nina,

Saw where u was able to get off the florinef, and take a ssri, was wondering which one would help b press , I attempted lowering my florinef slowly a while back to come off it, and well i ended up after getting it stopped, 2 days later in the er, with bp of 30, so i am desperate if theres any way to help raise bp, besides steroid, i hate it. I also take midodrine, but to be honest havent noticed it helpin at all!! Any advice would be appreciated, if i cant exercise it is a nightmare taking the florinef, which changed my appearance, to where some people dont recognize me at all!! Know it dont add weight to all but of course it did me, and i would give anything to find a diff med, so if anyone else knows as well by all means, but i would discuss with one of my drs, lol, as they all have diff opinions!!

Thanks

Donna F