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.

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.

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 KZfaq are better than none so this video can reach the people who need it.

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 - 😢

I'm so glad this showed up today. My blood pressure has a mind of it's own. I was in ER once and they couldn't figure out why my BP was so high. Now I get it. I don't sleep either, although exhausted. I've been dealing with it for decades. I get maybe 4 hours or no sleep at all without meds.

Very informative. I wish my Drs would take the time to hear it. Yes my living situation and mattress are big contributors to my sleep deprivation, pain, and disautonomia problems. What's the plan, where are the folks who give money to disabled people in the US to find more accommodating environments, buy healthy mattresses and pay for all the health aids to compensate for medical neglect and abandonment. Who's funding bite guards that cost $800-1000 WITH INSURANCE?Just wondering because I keep trying. This is killing people, and that IS harm, just in case the medical industry isn't aware.

Dr ... Is a general internist of private practice in Rockwell Maryland, he has been interested in the joint hyper mobile syndromes and related autonomic sleep disorders since 1990s and speakers regularly on these subjects in local and national meetings, including the eds society and....sorry idk good luck! If i was on my pc it would be much easier

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!!

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

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

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

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.

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.

Captions alright next we have a guest speaker from he came all the way from Rockwell Maryland he was nice enough to agree to let me intrude on his time off...

Thanks ✨️

A great talk, thank you, I learnt a lot.

I wish I had a single doctor in my 8 years being housebound and mostly bedbound who had even a tenth of the knowledge, concern and insight Dr. Picinki does. In face I was diagnosed with EDS at 32 which is quite severe and effecting every organ system profoundly. I had to wait 4 years to see the only genetics doctor who takes Medicaid in Colorado and he removed my EDS diagnosis calling it Hypermobility Spectrum Disorder saying organ system involvement has no significance in EDS and dysautanomia and gastroparesis don't have any significance significance in EDS. The fact I have no aortic involvement (such as in vascular type) or any prolapse (which has yet to be determined if my being incontinent in adult diapers 24/7 at the age of 45 with no vaginal deliveries and 2 premature babies many years ago is any indication of uterine prolapse or bladder prolapse, and I'm still trying to get into a gynecologist). So I couldn't have EDS because I haven't had witnessed dislocations. But he didn't do a physical examination or any blood testing. I stayed fully clothed and sitting down. Because I'm using a wheelie wouldn't let me perform the Beighton Scale tests and wrote zeros all over my report and N/A's. My validation was ripped right out from under me. He was my last resort. I am at a total loss. It's hard enough to be believed even with my EDS diagnosis and now he sent a terrible report totally discrediting everything I have worked with countless specialists on to my primary care provider. I am so devastated and hurt and let down and furious and if anything has disrupted my sleep more and thrown my stress level way higher than before (and it was already terrible due to Addison's Disease (adrenal insufficiency that causes severe adrenaline spikes and bottomed out cortisol). I was a mess before and now I feel like I've got nowhere to turn. I thought with all I have going on (if anyone has watched his lecture on "Beyond Autonomic Dysfunction in EDS" literally everything he discussed that makes up EDS Hypermobility type, I have been dealing with countless doctors about and have quite a thorough history of which thus specialist had records of). I feel like I am losing my mind. I can't take all this back and forth and dismissive distrust and passing the buck giving and taking away diagnoses and not testing for things for whatever stupid excuse they decide to blow up my.....yeah...at that moment. I nearly died from gastroparesis because the doctor laughed in my face when I asked if she could test me for it. It took me two years to get the courage up to ask another doctor and it was significant enough I ended up in ICU with heartland kidney failure from malnutrition. Any comments, a single idea would be greatly appreciated. Sleep is a MAJOR factor in all of this and the thing that started my trip down doctor lane. I have had 7 sleep studies and 3 MSLT's and have been loosely diagnosed with narcolepsy and a giant.plethira of a bunch of other sleep disorders. At least those have stuck. But that's only the tip of the iceberg. Fortunately I am on most of the meds he mentioned are helpful. Sadly they aren't helping a ton. I am willing to fly anywhere in the US to see the right doctor for EDS and my mother is willing to pay out of pocket. She is far from rich and is supporting me as disability has denied me after 4 years. I have to start over but with what? Now I don't even have the EDS diagnosis and the geneticist blew me off and my records from him look like I'm barely hypermobile. I am a 9 on the Beighton Scale and I'm 48 years old.

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 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

nice video informative,good effort,

They have me on a heart rate monitor for a month to check out other health things I’m having. Maybe if I have issues it will show up. I had a sleep doc tell me in my 20s I did not get REM sleep. Other sleep studies have not showed that. I have never understood why. I have cpap and still wake up exhausted. But wow! The super extreme dreams / nightmares etc. I remember telling the sleep lab, I didn’t sleep either, and they told me I was asleep. I move in sleep scream etc. do they ever suggest getting another sleep study after a certain amount of years? I’m aware sometimes when my dog gets out of bed and goes potty outside. First time someone has explained the hyper active thing!!!

I take Lexapro in the morning and it helps me a lot with my presyncope during the day but I am having lighter sleep and remembering every dream so I’ll be talking to my doctor about that

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

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.

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 .

I have ptsd and EDS I use Xanax I don’t have tolerance. I hate clonizapan. It is totally groggy. I can take the Xanax when none of the other mind body tools to relieve anxiety help. I do have chronic pain I cannot take any NSAIDs very allergic. I cannot take any SSRI’s I had reaction that is that intolerance syndrome - I do take tramadol but it is not enough for the pain but I don’t want to be any more sedated. So I keep with the tramadol. I have MS enlarged adrenals scoliosis APS. I use voltarain gel sometimes and I have a muscle relaxer baclofen - no help. I sometimes stay awake for seven days. Terrible. I have hydroxyzine for my hives. Benadryl makes me unable to sleep for days. I take small dose only 10 mg of amatryptiline off label to help sleep. No easy answer for me.

Down here

No subtitles?? Are you kidding me??

Very interesting!

A great speaker 🦓

HISTAMINE KEEPS U AWAKE?? WHY DONT I KNOW THIS! Wow amazing info. Ty !

I have vascular ehler danlos. I have hypoventilation with retained co2. My pulmonary sleep Dr. sees this as normal. I wake up gasping with bad morning headaches and overactive sympathetic nervous system symptoms. I asked for a bipap but no ones listening. What is your recommendation for next steps I can take.

hello i need help with diagnosis. what type of doctors should i be in touch with? I am located in RI and have medicaid.

How do you quantitatively measure Sympathetic/Parasympathetic activity?

What are autonomic nervous system resources? How do people heal it?

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.

I have it my rheumatologist agrees. Even at my age my score is as high as it gets. I hit all the marks. I am waiting until they have the hyper mobile gene identified. They are almost there. I have lots of medical issues. Which is the root problem? Maybe the EDS. what kind of doctor can manage this condition that I have - EDS.??? Need some advice. Thank you.

What about ketamine for chronic pain?

I don’t sleep well anywhere except in a hospital chair. Long story.

Chuck Schumer is moonlighting as a doctor now?

What do you think about CBD a a SLEEP AIDE?