Midodrine Not Working?

[Dizzy Dame]

Hi guys,

I moved apartments nearly a month ago and since then my health's taken a turn for the worse. I've had to take an IC for my class this summer, and I've been unable to leave the house on my own for weeks because of near-syncope every time I'm in the heat (even just walking the 20 yards from the door of my building to my car is impossible). I've been in the wheelchair every time I leave the house (which isn't often).

I'm on Midodrine, and for months seemed to be improving on it, but now it doesn't seem to make a difference. I wrote Dr. Biaggioni at Vandy about it, and he asked me to do two orthostatic series, one when I'm medicated, and one when I'm not.

I just finished the "medicated" series, and the results were very suprising:

Supine: 112/71, 79 bpm

Sitting: 117/76, 81 bpm

Standing:

1 min: 121/79 113bpm -- slightly nauseous

3 min: 120/76 123 bpm -- began to feel dizzy, nauseous

5 min: 104/70 129 bpm -- very dizzy, grey vision, very nauseous, chest pain, felt about to faint.

These stats are only slightly better than my non-medicated stats...in fact, they're pretty close to identical.

Is there any way I've developed a tolerance to my midodrine? Or is my worsening health cancelling the affects? I'm very concerned because for so long, Midodrine seemed to be helping.

Ascaredanddizzydame

[Jacquie802]

Hi,

Maybe try upping your dose to 10mg 3 times a day?? Obviously you would want to check with your doctor. I notice that when I am outside or in a really warm/hot room the Midodrine does nothing. I asked my EP/Cardio about it and he said he wasn't surprised, due to the warm/hot weather.

I even put a post the other day about the Midodrine, because on it the other day the highest my bp went was 104/65, so who knows. Somedays I can feel the chills (side effects), etc. setting in when I take the Midodrine and other times I don't feel anything, feel crappy and my bp is low the whole day....

Jacquie

[MightyMouse]

you body may fluctuate day by day on how much it can manage bp and hr on it's own. 5mg is a very low dose. Also, 3x a day isn't usually the way it's given--it's supposed to work best at every 4 hours of waking time, with the last dose at least 4 hours before bed to avoid hypertension while lying down. Talk to your doctor as they may help you figure out how and when to adjust your dosing.

nina

[DSM3KIDZ]

I haven't tried that medication yet but was really disappointed when I saw your post. I hope you start doing better soon and sorry to hear your having a hard time

Hang in there

Dayna

[Guest dionna]

my doc kept on upping my dose. i was taking 8 of them a day, 3 morning, 3 afternoon, and 2 at night. i hated the side effects though and it really didn't help any no way.

dionna

oh and each pill was the 5mg so a total of 40mg a day!

[ariella]

I was on midodrine for several months when I felt that the effect wore off. I switched to mestinon, because of muscle issues (it's didn't react well for me together with midodrine). That worked well for a time and stopped working as well. Today I started midodrine again, after a break of about 10 months. I took a small dose to start, I remember having severe chest pain the fiirst time I tried it.

[goldicedance]

Sorry you are feeling bad. I agree with the others that your midodrine dose may be too low. Clinical trials showed than 10 mg every 4 hours when upright worked the best. My doctor even said that you can up it to 12.5 mg in the morning (assuming that is your bad time). He also suggested giving myself a "midodrine" holiday--that is, on those days when I knew I would be home doing nothing, to stop midodrine for a day to see what happens. Have you tried mestinon? Mestinon (except for the GI symptoms) works the best for me. On those days when my system is really challenged, I also take midodrine.

[Dizzy Dame]

Thanks guys for the advice. I really hope that increasing the dose will help me through this slump...however I'm pretty depressed that the current dose isn't doing it for me anymore because that either means 1) that I'm getting worse or 2) that I'm developing a tolerance-- in which case I'll develop a tolerance to the increased dose eventually as well.

It's been about a year now since I got sick, and anneversaries are always tough. All of my doctors were confident that I'd "get over" my POTS within a year... but I'm only slightly better than when I got sick, and all of my improvement is due to meds and gatorade. I haven't make any improvement on my own. Ugh. Okay, enough whining.

I'll keep people posted on how the new dose goes, and if we add any meds to the mix. I'm hoping to try Mestinon since it's been a miracle drug for some.

Hugs,

Lauren

[Sunfish]

hiya lauren -

others have already said most of what i would have mentioned but just wanted to add a "hang in there". and perhaps remind you a bit of all the successes you HAVE had in the past year, based on what you've told us in other posts. but i am definitely NOT dismissing that the past month or so has been super rough.

regarding the midodrine, it was initially a miracle drug for me, then became still something that helped me but with the help of other meds as well. i have at times taken up to 45mg/day. i realize that my health progression over the years is nothing anyone wants to emulate, but realize too that if a med "stops" working it doesn't have to mean things are getting worse. it could just be that things are changing. i know it's frustrating but many have to tweak meds over the years. or it could just be that you're having a rough spot that will resolve on its own in a few days, weeks, month, etc.

hang in there...i know that can be easier said than done,

melissa

[mom2amonkey]

I am sorry you are not feeling well.

My seven year old son takes 7.5 mg of midodrine every four hours. The midodrine seems to work well for him for a couple months and then he is back to laying on the couch. We tried Mestinon with an even worse change in symptoms.

I hope your Dr is able to find the right combination of meds for you.

Elizabeth

[Babettegall]

Hugs Lauren,

So sorry to hear about the meds failing to improve your symptoms. I've just started taking Toprol, so I can't offer any advice on the midodrine and system tolerances.

I hope that you get the dosage corrected and are on your way to feeling a bit better real soon. Could the stress of the move be having some sort of additional trigger on your system as to why you aren't responding as you have previously on the meds? Just trying to see if that might have played a role......

Wish I could offer you more dear, hang in there!

[Dizzy Dame]

Thanks Babs, Mom2monkey and Melissa,

Melissa, you're right about how I was improving. I need to keep in mind that this is just a slump, that I'll probably start feeling better again, and that there were times this year when I felt almost close to normal. I should be concentrating on those good times instead of wallowing in how bad I feel now.

Babs, I think you might be right about the move. I also skipped a few days of my birth control last week, and that always throws my body into a tailspin. Moves are difficult even on healthy people, I can't pretend like it wasn't hard on me too.

I've started a higher dose of Midodrine today 7.5mg. I'll continue to take the 5mg three times a day, and take the extra 2.5 if I'm going to be active. I just took the first elevated dose about an hour ago and I feel better than I have in a few weeks. Hopefully, if I don't constantly take this elevated dose, I won't develop a tolerance to it (if that's really what's going on).

Thanks so much all of you for the support and well-wishes

-Lauren

[jesse1919]

Hi all,

I have had to increase my Midodrine progressively over the the past 2 years. I don't think my POTS is getting worse but it seems that I'm consistently getting more resistant to the medication. I started at 2.5 mg for the first week and titrated up to (I think) 10 mg/ day at one month. This is pretty normal to have to titrate a medication, any medication, for the first month as your body adjusts. I've taken several other meds so I expected this. But the problem with Midodrine is that it never reached steady state. I've had to constantly increase it roughly 2.5 mg/day every 3-4 months. Now I'm at 25 mg/day and it just isn't doing very much for me. I don't have any bothersome side effects at least. I'm going to increase to 30 mg/ day and that will probably help for a while but I doubt it will last. And then the problem will be I've gotten to this magic 'recommended' 30 mg/day and my GP (who knows little about POTS) might be reluctant to up it any more even if my liver labs are normal. I know I shouldn't get ahead of myself and start worrying because that will just make me more symptomatic... Anyway just thought I'd share.

Jesse

[goldicedance]

Hi, Jesse...I am not sure I understand your Midodrine dosing. The "typical" dosing for POTS is 10 mg every 4 hours when you are upright. Also, my doc even told me to up the morning dose to 12.5 mg.

Are you going to a POTS-literate doctor?

Good luck,

Lois

[flop]

I think that Jesse may be referring to his total daily dosage. I assume / hope that you're not taking it all at once?

Flop

[Marco Rosas]

My situation might be worse. I take 10 mg of midodrine 3 times a day. I haven't been able to work in 3 months .  My BP has been as low as 60/42 standing.  Consistently in the 70 to 90 range. Fludrocortisone worked a little better, but my BP was still low. I can barely get around. I need someone with me at all times. I am thinking this might be a permanent thing.  My doctors are trying everything they can, I would like to think. They are saying it's probably a combo of my diabetes 2 and peripheral neuropathy that's doing this to me. My nerves are pretty much shot. This hypotension I have seems pretty severe. Hard to live like this

Edited July 29, 2017 by Marco Rosas
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