Medication Information

[suziebear]

I am very interested in hearing what medication may have helped you all with your POTS and / or symptoms and what medication definately did not?

I have tried Florinef and did not see any improvement. I think I have had a little help with Mestinon however.

My neurologist is talking about putting me into hospital this week for a few days to just try a heap of meds out in a safe and controlled enviroment where I don't have to worry about side effects and bad reactions.

I would really like to hear from as many people as possible as to what you take and the outcomes. I am trying to come up with a list of things I would like to try next.

Thanks so much.

Susan

[TXPOTS]

I'm not sure how long you were on Florinef, but it takes weeks to months for maximum effect.

What has helped me: Florinef, DDAVP

What has not: Midodrine, Clonidine, Cymbalta, L-arginine (nitric oxide precursor). I had bad reactions of Cymbalta and Midodrine, and Clonidine made me worse.

The biggest help: Exercise

[lieze]

Tiny doses of Xanax.

I have literally had days where I had symptoms like dizziness or feeling out of it, that knot in the stomach, an overall weak feeling -taken a portion of a Xanax and it takes all of that away and I can have a normal day.

Atenolol was great it felt better than the Xanax to me as far as helping me feel relaxed but normal but it dropped my bp too much.

I'm still looking for help myself-good luck.

[handmadebyemy]

compression stockings! waist high 30-40 mmHg

[Christy_D]

Fludrocortisone helps my sons dizziness. And Doxepin has taken away many symptoms completely. He is still nauseated daily though.

[Vlinder]

I use Ivabradine for my heartbeat. when I don't take it my heartbeat will go between 140-180, just when I do little movements.

Now it's lower, so I can do a little bit more.

When my heartbeat now goes arround 120-130 I have specialy heartsymptoms, feeling dizzy, feeling not well at all.

[Rachel]

Hi Susan,

How are you doing? Have you tried any new medications?

All of us respond differently to meds, so what works really well for one person may not work at all for someone else. It can take a lot of trial and error to find the best treatment for each individual.

For what it's worth, the things that help me the most are: Midodrine, Cerefolin, Melatonin, compression, coffee, gatorade, fluids, peppermint tea, adequate rest, and mild activity.

Things that definitely did not help me were: Epogen, Cymbalta, Ritalin, Beta Blockers, and Klonopin. But those meds have been very helpful for others here.

I hope you can find a good treatment plan for yourself. You might want to also check out the DINET page, What Helps, if you have not done so yet.

Rachel

[nmorgen]

Clonidine is the only thing I have been on since my diagnosis. It has calmed a lot of things down for me. It took my body 3 weeks to adjust to the medicine and not fall asleep constantly. Good luck.