Midodrine Has Stopped Working

[scarfgirl]

Around this time last year I was at my healthiest in a long time. I was able to exercise in a gym and I had dropped all my meds except for midodrine and a teeny tiny bit of florinef. Then I had the usual sob story-mild illness causing total relapse and all hopes dashed once more. Midodrine was my miracle drug that had helped me get strong again, but after this relapse I felt exactly the same as I did before I had started taking midodrine. My Dr. hypothesized that something else was behind my relapse and after months of poking and prodding it was decided i had a chronic sinus infection that was wreaking havoc with my system. I had surgery a few months ago but I'm still no better. I can breathe really well now, and the constant join pain is gone, but the tachycardia and fatigue have stubbornly persisted.

Midodrine and salt loading have always helped me through rough spots in the past but not this time. The only thing that helps at all is large doses of atenolol to slow my heart down. I'm now taking 4x the amount I used to take and I still feel I'm running a marathon everytime I stand up. I can't do ANYTHING anymore. In the past, even when I felt bad or relapse for no reason, there was always something to try. But neither me nor my doctors can think of a way to go from here, and that scares me to no end.

I really don't know if this post is an attempt to ask for advice, or just my need to vent frustration, or admit how ******* terrified I am right now.

[Ernie]

Hi,

One way to check of the Midrodrine has stopped working is to stop taking it completely and see if your symptoms aggravate.

Maybe you could retry some of the meds that you tried before and see if they now work. Since your body has changed you might react differently.

[valliali]

So sorry to hear you are feeling badly. For awhile, my beta blockers worked like magic on me. I felt like my usual self, went backpacking in Yosemite, and did so many things that this disorder made me feel like I would never do again. I am so grateful I milked every second of feeling well on beta blockers, because just a few months later, they stopped working too. I am now completely frustrated because I had so much hope that I'd found an answer. I completely understand how devastating it can be. Hopefully you are just having a momentary down period, but will find much relief soon.

[corina]

kexia,

i would try ernie's suggestion as this is how it works for me. once i try a med and it doesn't work i can give it another try after some time and it works well. i do not now why, i've topped trying to understand this disease, just try to solve the problems!

also, when i started bb's on a very low dose it worked wonders for about 10 days. then i came back to where i was. i upped my bb's (supervised by my cardio of course) until 300mg and every time i thought/hoped that the effect would last , but it just didn't. it seems that my body is adjusting to what gets in and want to live its own life

i hope some of the suggestions will work for you and that you can get back to a better quality of life!

take care,

corina

[scarfgirl]

You know, I didn't even realize I had made that post until I was checking out the forums today. Guess I was a bit dopey that day.

Yeah, Ernie you're absolutely right. I realize that's my next step, but I've been putting it off since it was a pharmacy screw up with my midodrine that started this year-long relapse. I'm on prednisone, but once I'm done with it I'll go off the midodrine and see what happens.

Thanks for all the BB warnings guys. Do any of you have more positive experiences with calcium channel blockers?

[daisy]

Hello - I do have experience with a calcium channel blocker - cartia. In Feb. I was taken off the Toprol, and flecanide (an anti-arrythmic I was on to treat afib and atrial tach) because I was building up a toxicity to the flec and the toprol didn't seem to be helping my POTS symptoms as much. I had been on the Toprol for about four years and we believe my body had built up a tolerance to it and it started REALLY lowering my bp despite the fact that I was on florinef as well. Anyway, we went through a period of re-testing to see where I stood. Everything was pretty much the same - still had definitive POTS and other atrial arrythmias. Because I wasn't responding to the Toprol as well and it was dropping my bp too low, my Dr. decided to try a calcium-channel blocker. For me, it has worked about as well as the Toprol without as drastic of a drop in pressure. I still have breakthroughs of POTS episodes but I had those on the Toprol too. It does a pretty job of controlling the tachy overall - still get flare ups but l also have other arrythmias to deal with that make treatment a bit more complicated. The biggest plus for me is it that it doesn't cause as many physical side effects. It eased some of my brain fogginess and I am not nearly as fatigued as I was. I used to feel like I was constantly walking through quicksand but I am more alert now. I also had horrible stomach problems which cleared up completely after going off of those meds. I don't know which one was causing the most problem, the Toprol, the flec or the combo of the two but I don't miss them at all. For now, my Dr. and I have decided to leave well enough alone and re-evaluate every so often.

Bottom line is, my symptoms are controlled about the same with less side effects. Just my experience......good luck.

[yogini]

Hi,

Sorry you're not doing so well. Is the atenolol lowering your BP a lot or just your heart rate? I totally understand the Catch 22 with BBs. I've taken atenolol in low doses for 4 years. I know it lowers my BP and makes me more tired, but I've had a hard time functioning without it. Maybe the DINET main page would have info to help you - more meds you haven't tried or a POTS specialist in your area that has some other ideas. Feel better soon!

By the way, you might want to post about the prednisone - it may also be making you feel worse.

[ajw4790]

Hope things get better soon! Sorry I don't have experience with calcium channel blockers. It can be so frustrating to go from having good days to back where you started from (or even more symptomatic).

Did the drs. put you on the higher dose of Atenolol? I was wondering if being on this high of a dose couldn't be raising your HR due to decreased BP? Also, maybe another beta blocker would work better? Not sure...

Best of luck!