Dr. Alan Pocinki - Evaluation and Management of Autonomic Dysfunction in EDS

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Күн бұрын

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

Пікірлер: 14

@tiffanym.4036 2 жыл бұрын

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

@lesleeutter824 25 күн бұрын

"she could spend most of the day on the sofa and still be exhausted because your body is wasting energy regulating basic body processes" both explained my own experience to me, and made me feel really understood! But also... :/

@TA-fr2vw 5 жыл бұрын

thank you!!!!! the best presentation!

@eparke20 6 жыл бұрын

Sound quality isn't great, please add closed captions

@TheEhlersDanlosSociety 6 жыл бұрын

As mentioned, a transcript is in preparation. When ready it will be added to te description.

@eparke20 6 жыл бұрын

The Ehlers-Danlos Society great. CC can be added to the video so the hard of hearing can watch and keep up.

@brynevohr7393 6 жыл бұрын

Here is the link to the transcript: bit.ly/2BfpnWo

@overaroundunder Жыл бұрын

@@brynevohr7393 link broken unfortunately

@WildKatatHeart65 5 жыл бұрын

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.

@Dulcimerist 2 жыл бұрын

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 2 жыл бұрын

No. Drs don't seem to know what to do about autonomic dysfunction.

@Dulcimerist 2 жыл бұрын

@@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 2 жыл бұрын

Ahh.. tricky! I like it 👍

@Dulcimerist 2 жыл бұрын

@@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.