From the 2017 EDS Global Learning Conference, Dr. Alan Pocinki’s “Evaluation and Management of Autonomic Dysfunction in EDS”. His slides are available from www.ehlers-danlos.com/2017-ed.... A transcript is available bit.ly/2BfpnWo
I would love closed captions on videos like this where the audio is unclear. I have auditory processing disorder and it Took me twice as long to watch from rewinding so much. But great info I love Dr Pocinki
Thank you. I have had fairly severe autonomic dysfunction for over 20 years. Just recently (2 weeks ago) started midodrine and was so hopeful it would give me some semblance of normal. It didn't. The side effects are too bothersome. I even broke the tablets into fourths and still having side effects. Chills and the worst: leg and foot pain. I hope one of those other treatments might work and that my dr is willing to try them on me.
Sorry it didn't work for you. Midodrine stimulates the alpha-1 adrenergic receptors, which are often already overstimulated and overly sensitive in POTS and dysautonomia patients. It sent me to the ER. Hoping you find something that works for you. I ended up on Pyridostigmine to treat both my dysautonomia/POTS and digestive motility issues, and I take either Clonidine or Guanfacine before bed to further help treat my dysautonomia. Have they tried you on IV saline infusions?
@@artistknownaslisa2850 Yeah, that's frustrating. I ended up having to do my own research to find the medications I wanted to try, and was able to find other uses for those medications that I had also been diagnosed with. For example, Clonidine and Guanfacine can also be prescribed as migraine preventatives, or to treat insomnia, ADHD, or anxiety. Since I had been diagnosed with those, I was able to get my dysautonomia treated in a roundabout sort of way by giving my doctors other reasons to prescribe the dysautonomia medications.
@@artistknownaslisa2850 Yep! Sometimes that's what we have to do in order to get the treatment we need. Even if the medication doesn't help the dysautonomia, it could help treat those other health issues. Clonidine/Guanfacine did end up dramatically reducing my migraines and eliminated my insomnia and anxiety, as well as treating my dysautonomia/POTS. It seems like the more health issues and symptoms of mine that a medication can be keyed to, the more likely that medication will be helpful. Using this strategy has also steered me away from the adverse drug reactions I used to get 20-30 years ago when doctors would randomly throw all kinds of drugs at me without much thought or strategy behind them.
