Any Meds Ideas For Eds/pots?

[Sarah4444]

Hi there - I'm new here and I have been literally flat on my back with POTS for a couple of weeks. I live in Northern Ontario, Canada, so although I am fortunate that my medical visits will be paid for, it will take a little while to find out who to see and to make the arrangements. My doctor and I suspect that I may have Ehlers-Danlos Syndrome as well. He is a great doctor and good listener but has only seen one other patient with POTS; he is trying to get me stabilized enough to travel, but it seems to be a matter of guessing what to do. I have had POTS all my life and only recently found a vocabulary for what was going on. It has been aggravated by many things over time, including most recently (2004) pregnancy. I have joint pain all the time, and in Feb started Cymbalta, which was great for pain and awful for POTS. I stopped Cymbalta and have just started taking Florinef and now can lie down without feeling like I'm going to pass out. I guess the next step is to be able to sit and stand again - I have two little kids and am finding this really hard. My doctor wants to switch me from Florinef to Celexa, but when I took Celexa once in the past I wasn't happy with the side effects and it seemed to reduce my dopamine and NE levels over time (just my guess).

When I am feeling better and can get some blood to my brain again I will read the posts more carefully, but in the meantime are there any EDS/POTS people out there who might be able to give me some ideas about which meds might work better than others? I am just too exhausted for much experimenting and too many wild goose chases right now. Thanks in advance!

[Chaos]

Hi and Welcome to the Forum. Glad you found us, although sorry you've had the need to find us.

I have recently been diagnosed with EDS-HM (hypermobility type). I found Midodrine to be helpful for my symptoms. I've recently had Florinef added to my meds and I'm not sure if it's benefits outweigh the side effects I seem to be having with it. Wellbutrin is the only anti-depressant I've been able to tolerate and helps me a lot with energy levels....even when I'm not feeling in the least bit depressed. I started low dose Inderol (propanalol) for symptoms I had long before I was diagnosed with PoTS etc.

Of course the problem with dysautonomia is that everyone seems to react differently to meds so what works for me may very well not work for you. Since many of us don't tolerate meds very well to begin with, it certainly is a drag to have to keep experimenting with lots of different stuff- expecially when you're already not feeling well.

Hope you can get some relief soon. It's really hard with small kids to be laid up for ANYTHING! Good luck!