Can you please enable captions for this video? Many of us have hearing loss or are deaf or hard of hearing. If you are not able to put accurate captions, the auto-generated ones from KZread are better than none so this video can reach the people who need it.

Wonderful doctor. My 32 yr old daughter has both Ehlers Danlos and Morgellons Syndrome. It is a death sentence due to severe pain, living in a bubble and continuous fog, not to mention zero cure or understanding of either of them from many in the medical community. These diseases need more research and help for sufferers.

Finally someone to aknowledge the worst of all things is that the more you stay awake you fall into a state that is impossible to fall asleep, rather than your body listening to your exhaustion and responding normally like in healthy people, its like the feedback system here is severed. This is the thing that gets you in a viscious cycle of changing drug after drug just to fall asleep. And of course that only worsens with time the problem that doesnt let you get the deep sleep. Not to mention the adverse reactions to most drugs and supplements this disease causes.

When you say finding a Dr to work with is "a problem for all of us" please know that what you're actually confirming is that it's a problem trying to find a Dr who is committed to healthcare, not the medical industry, and has the respect for patients to listen and believe that our experience is real, that we're smart enough to research on our own when Drs abandon us, and that we are the MOST reliable witnesses to our physical health, not the most unreliable witnesses. And that we are there seeking ATTENTION to our health, and DRUGS that we know are safe and effective FOR US. And we may very likely know this information better than you do. The medical industry has caused more bias-based harm than we'll likely ever know, because Drs are insulated and protected from being held accountable or liable for that harm. The ones harmed are aggressively silenced.

Have you ever considered a physical explanation for the overstimulated parasympathetic system? I get woken up every arousal with a racing heart and horrible sweats when I move my neck wrong or try to take a deep breath. It feels like my collar bone is pinching a nerve, and when I’m awake I unconsciously avoid moving in ways that provokes it.

Ha! Use your bed for sleep and not other activities. What if you live in bed?? And are sleeping throughout the day on and off?? They have not been able to treat my limb movements either. I need a new sleep doctor!!

No subtitles?? Are you kidding me??

Omg he just recommended GABAPENTIN , my sister was on it and it ruined her memory, I took it for 3 days not realizing that was the drug that messed her up, but thankfully I and had all sorts of side effects especially urinary incontinence so I stopped it right away. I do have to admit that she was on high doses due to trigimenial neuralgia .

Good info but I'm surprised he didn't mention narcolepsy as that is very common with EDS

I wish my doctor would acknowledge the obvious diagnosis of EDS in me or at least send me to a Dr that can diagnose . I have had physical therapist and other specialists tell my doctor that I am hyper-mobile. He just said he didn’t think I had it or at least not the vascular kind . But yet I have a paralyzed diaphragm and my blood pressure has been high . I’m extremely anemia and he hasn’t sent me to a hematologist, even though. I have had 2 iron transfusions in a year and half

Thank you for posting this lecture, I think the Dr must have been following my life! I have failed 3 different sleep clinics.

Thanks ✨️

I'm in the process of diagnosis and decided to look into this more and wow...this explains a lot

Thank you for this presentation- this is really helpful. I have been diagnosed after 20 years of symptoms - I always wondered why i “feel beaten and sore” on waking - that’s if I get to sleep.

I wish Dr Pocinki lived in Massachusetts. Have had treatment-resistant insomnia for 11 years, and was diagnosed a few months ago with EDS/POTS/MCAS, so now we at least know the cause of my sleep problems. But can't find anyone in this area who is well versed in EDS patients or treating the related insomnia/dysautonomia symptoms. I am so - tired - 😢

Karen I agree with everything you say, thank you for sharing, I hope others take your fantastic comments and use them to feel better, as 30 years of searching with regular doctors they don’t seem to help, I’m definitely going to try some of your protocols, I’ve just now found out about EHLERS-DANLOS SYNDROME and I know I’ve got it. The best thing I did for my health was stop eating dairy and gluten and it was also the hardest, to do.

Alan pocinki, life changing information. Diagnosed with hypermobility eds yesterday. If i find a doctor on board with this info and willing to treat it my life would improve beyond words. The emotions i feel from learning this & finally having an answer on why my body can not relax & sleep. You are awesome, thankyou. Ive never felt so understood.

Very informative. I wish my Drs would take the time to hear it.

I have EDS and Sleep Apnea. I snore at night when I’m sleeping, I will be having another sleep study and will be wearing a CPAP mask as I am sleeping.

I'm pretty sure he just described my life!!!