Should I take midodrine

POTS has been overwhelming for me. After 1 year of treatment, this hasn't improved at all. I can't stand for more than 2 minutes without feeling like im going to pass out. Should I take midodrine? My life is at a complete stop right now because of POTS and autonomic dysfunction. Does anyone have experiences with midodrine? I want my POTS to go away naturally and not have to rely on these medications for the rest of my life to help me stand. Im 21.

I have known a few people with POTS who felt that Flornief or midodrine helped them to some degree. The cardiologists, neurologists, and POTS specialists I've seen all have told me these drugs work about as well as a placebo - so they can work! Just not anywhere near universally. Might as well try if you have tried all the other things to no avail.

I know POTS is so frustrating and limiting!

Other options, in case you have not tried them:
- Recumbent restorative yoga
- Physical therapy specifically for POTS
- Consuming large amounts of salt (some need two teaspoons of salt per day, spread throughout the day)
- Compression garments for the legs
- Addressing mast cell activation syndrome, if applicable
- Limbic system retraining programs (Gupta, DNRS)
- Proper hydration (your weight divided by 2, in ounces, of water per day, and not more! too much hydration is bad for POTS)
- Addressing mold exposure

Bailey, did your pots not go away with treatment?

I too would like it to go away naturally but last month my symptoms worsened severely and I needed to go on meds for the time being.

Florinef has worked wonders for me (was recommended by neurologist/LLMD and cardiologist as well) for the last few weeks after my symptoms worsened. I take a half dose (.05mg) once a day and it helps you retain salt which increases blood volume and reduces symptoms. I don’t know how long I will be on it but it’s the difference between living a life and being in bed right now. I won’t take beta blockers at this time because my Bp is normally low. I never tried midodrine. Florinef Is a mineral steroid that increases aldosterone production (versus your regular steroids that are glucocorticoid) which has your kidneys retain sodium instead of excreting which keeps your blood volume up. There are side effects being a steroid (though the docs say the risks are lower for Florinef due to it being mineral coritcoid versus glucocorticoid… and especially at my dose).

I’d Definitely order compression socks, too. I started a few days ago (I got the ones that go up to the knee) with the 15-20mmhg pressure (which is the low end) and I notice my heart rate doesn’t go as high. I will prob go for higher compression levels in a week after trying these.

I believe I have MCAS so I’ve also been taking H1 (Zyrtec, Allegra, or Claritin are the 2nd gen H1’s and are preferable to the earlier H1’s like Benadryl) and H2 (Pepcid, Zantac) blockers twice a day. I’ve noticed a difference after a few weeks with the Florinef and anti histamines, now adding the compression socks.

In lieu of meds, you need to consume a significantly high salt diet, the proper amount of fluid to go with it (too much is bad, too little is bad), and compression socks, along with slow positional changes that are the standard protocol for most. Plus the stuff Saraeli mentioned (recumbent exercises, etc).

In addition to treating the infections, I also excercised regularly (2 or 3 x weekly) on the elliptical.