“Sleep Disorders in Ehlers-Danlos and Related Syndromes: A Panoply of Paradoxes” - Alan Pocinki, MD

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Dr. Alan Pocinki discusses how poor sleep and sleep disorders can have a negative effect on patients who struggle with chronic illness.
Poor sleep can fuel the cycle of chronic pain, leading to even more disordered sleep and worse pain or symptoms. Watch to learn more about how this can occur, specifically, in patients with Ehlers-Danlos syndrome (EDS), Chiari malformation, syringomyelia and other chronic illnesses.
This lecture was given at the February 2019 Chapter meeting in Charleston, South Carolina. (2019)
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[@simonram8505]

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.

[@Truerealism747]

I can take most minerals now though it was bad I found introduce over months very slowly

[@terisasam5604]

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.

[@karencarney7595]

I have hEDS and classical, dysautonomia, pots and mast cell . Single 34 year old mom of a six year old. I understand where ur coming from w ur concern for ur daughter. What helped me tremendously, esp being broke, is getting your essential 90 vitamins and TRACE minerals. Exercise w the proper trainer/PT (which I can't afford so plates is just as good) working a good body mind connection. Here's the eds supplements you need: *whole food multi *b viatmin complex w inositol (stabilizes wacky hormones) works amazzzing *coQ10 *Pycnogenol (French Martitime Pink Bark) helps tremendously w the connective tissues *MsM crystals (TRACE minerals for joints ans connective tissue health) *silica (TRACE minerals for connective tissues) *L Carnitine (muscle recovery and an amnio acid we lack for producing connective tissue, muscle and cartilage) *Lysine, Glycine (3000mg) and Proline. Amino acids that make our messed up bodies create actual collagen *fish oils (the omega are a must) *Magnesium glycinate lysinate (chelated) 250mg. We are notoriously known for low Magnesium, chelated means its the most easily absorbed and all those fancy words after the word Magnesium is just the type that works best for further absorbed. *Biotin for our brittle hair *vita D 1500mg, get natural sun too use sof our skin is fragile enough:) *L theanine another amino acid that helps w mood but for us keeps us stable, as we have low amounts in total, of all the amino acids listed above *probiotics ofcohrse, on an empty stomach,first thing in the morning and last but not least, retinol, the highest purity you can tolerate PM only, makes your skin sensitive to the sun if applied AM. Vitamin C serum & peptides by The Ordinary (cheap very festive brand, stimulates collagen from the outside, collagen itself is too big of a molecule to enter thru the skin to do anything, peptides stimulate the process, combined w the exact protocol used for most hypermobile cases, you will see a difference in skin laxity.) Rosemary oil on scalp snd a few drops in your shampoo will stimulate hair growth w no side effects. Lots of fresh air, lots of water sns stay away from too much dairy, preservatives and packaged food get your veggies in on every literal meal, as they are alkaline and pack a punch of chlorophyll and trace minerals pulled from the earth, these TRACE minerals help u absorb other nutrients we need so badly. Cognitive behavioral therapy and acupuncture. Medication, good sleep. Seems Iike a lot but it turned my life 180.

[@gailrocafort9112]

@@karencarney7595 I believe you are correct to treat your symptoms as naturally as possible, I’ve been suffering with chronic pain for 30 years, doctor after doctor, and the only thing that helps is taking the right supplements and actually quitting gluten has helped me the most.

[@karencarney7595]

@@gailrocafort9112 eds patient's have a ton of food sensitivities as you know, but I'm glad you know your limits. It's hard to resist binge eating sometimes though 😕

[@Truerealism747]

@@gailrocafort9112 what were best supplements I take Dr ts among others

[@Truerealism747]

Tryed ldn?

[@thismessismine]

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

[@brittanynicolemeyer8843]

I was just going to post the same thing! Thank you for saying this

[@SimiSilver]

He says slides are available. I wonder where or how

[@boops1192]

It’s criminal how bad “closed crap 💩 tions “ are! I understand when you’re dealing with live video, but when it’s recorded AND it’s coming from medical professionals who treat a disease known to sometimes cause hearing loss, there’s no excuse.

[@aspenenglish4976]

Awe. I’m so sorry. I thought my daughter was unique in her hearing loss.

[@bluebird9825]

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. To any drs believe this, & use this information to save lives. I cant imagine anything that would change my life more drastically. Itd be a dream to be treated by you doctor. Your willingness to learn, & trust the feedback of the 2-legged kind is life saving.

[@eileenrhodes3575]

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

[@glamcat7948]

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 - 😢

[@sweetnessofbeing]

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

[@boops1192]

Yes 👍🏼 He didn’t name it, but I think those of us who have it definitely caught how the cycle attributes to more episodes.

[@asmodahlia]

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

[@gailrocafort9112]

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.

[@simonram8505]

Can you tell more about your diet, did it help with autonomic dysfunction and sleep, do you eat meat?

[@toranmarcum819]

Looks like Karens comment is removed, its to bad I would like to have read it

[@saltycrone]

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.

[@lkk2lkk229]

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.

[@glamcat7948]

"Beaten and sore" is such an accurate description :(

[@jackiesicilian5720]

Does your body feel numb, stiff and lungs feel heavy, like squashed by weight all night?

[@Truerealism747]

@@jackiesicilian5720 I've had that but now it's more in shoulders armpits and heal pain when get up to very hard

[@Narrabungi]

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

[@BobbyJonesCSF]

Glad to hear it!

[@shannongreenwell1278]

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.

[@gloriakummer5357]

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!!

[@aspenenglish4976]

Do your arms and legs move about ?

[@farasatalidogar8271]

nice video informative,good effort,

[@andreahanna7562]

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.

[@boops1192]

It’s all physical. Hyper mobility allows for exaggerated movement of cervical spine. This can further irritate the vagus nerve alerting the parasympathetic nerve system as a whole. This is dysautonomia.

[@Truerealism747]

I had it stabbing cracking in collerbone bfor two years terrible it moved in shoulders armpits now terrible thing

[@sovereignsoulutions6612]

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

[@nicolelauderdale3919]

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

[@sarahb.6475]

Very interesting!

[@BobbyJonesCSF]

Glad you think so!

[@gailrocafort9112]

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 .

[@boops1192]

Propanalol has similar side effects. I literally sat in my car for 2 hours because I couldn’t figure out how to drive to my best friend’s house. She lived at the end of my street.

[@Truerealism747]

@@boops1192 what was best medication you have tryed going in ldn this week

[@gwynnorris2496]

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

[@gloriakummer5357]

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!!!

[@symbolistartist]

No subtitles?? Are you kidding me??

[@carlyellison8498]

Read lips?

[@andethidialbubabibub3261]

A great speaker 🦓

[@SimiSilver]

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

[@SimiSilver]

Also ADD is an autonomic problem!? I love this doc!!! Why is Intuniv given to my stepson for anxiety? He has autism too

[@jul1ann3mari3]

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.

[@Dulcimerist]

Careful with those serotonin boosting medications like Tramadol and Amitriptyline. Mixing them can cause serotonin syndrome. Adding an SSRI to either of those could also cause that reaction. Muscle relaxers like Baclofen are also risky for EDS patients, as the decreased muscle tone can increase the risk of dislocations, subluxations, falls, and injuries. Have they tried you on low dose nightly Clonidine to treat your anxiety and reduce some of the pain? It's also commonly given to treat EDS dysautonomia and POTS. Hoping you can feel better soon!

[@claire5399]

Have you had a pharmogenetic test done to see if you have a abnormalities processing medication. I do. It’s so hard since almost nothing listed works for me and can be toxic

[@LangKatharine]

@@Dulcimerist Have you seen the series "How to Change Your Mind", by Michael Pollan? He brings to light how therapeutic use of psilicybin (legal in some states, like OR) has had profound effects on PTSD.

[@tequilasunrise950]

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.

[@BobbyJonesCSF]

Hi! Vascular EDS can be very tricky! Our friends over at The EDS Society may have more information about steps to take. Depending on where you live, there are plenty of EDS-savvy physicians who will be able to give you a good opinion! Visit www.ehlers-danlos.com and connect there.

[@andethidialbubabibub3261]

🦓

[@sovereignsoulutions6612]

How did you find that out?

[@tequilasunrise950]

@@sovereignsoulutions6612 vascular specialist

[@sixmercer2504]

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.

[@lienphan1620]

Also if you’re in Colorado there is a practice, unsure about Medicaid, but Centeno Schulz I believe in Broomfield. You are able to get proper imaging to get CCI etc diagnosis with an upright MRI. They can refer you to one of the neurosurgeons mentioned above. They’ve all worked together on research. Brain and Spine advocates may or may not be helpful that you can send all your current imaging to. I want to stress that there are certain angles that can be measured on a supine cervical mri without contrast that can still diagnose instability or compression, it just requires the right radiologist or neurosurgeon to take the measurements. Anyway, please message me and I’ll help you. I don’t check KZbin often though, I just come here for presentations like this 🙃

[@Truerealism747]

Have you tryed ldn

[@humanity1st.]

Oh dear, you broke my heart, I read all your sufferings. I am not better than you. I have to ask you was that damn Dr. in Denver?

[@LavVenizalda]

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

[@glockstarz]

I got the most help with orthopedics and rehabilitation doctors, the issue is that with eds it sometimes takes years for a diagnoses (for me it was 9 years)

[@Dulcimerist]

For a diagnosis, a geneticist or rheumatologist tends to work best. However, I've run into a few rheumatologists who either had outdated and erroneous knowledge about EDS, or who were completely clueless about EDS. Any doctor can screen you for hypermobile type Ehlers Danlos syndrome, the most common type, by running you through the diagnostic criteria here: www.ehlers-danlos.com/heds-diagnostic-checklist/

[@annahayden]

I went to a rheumatologist to get my hEDS diagnosis. You can look for a rheumatologist that specializes in EDS in your area through the Ehlers-Danlos Syndrome website if it is necessary. Asking for a referral to a specific rheumatologist sometimes works better with your PCP, but if you go this route, I would check through Medicaid’s website to make sure they are covered under your insurance first. I know this is 4 months later so you likely won’t need this information anymore, but just in case :)

[@StarSnow1101]

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

[@Dulcimerist]

Clonidine or Guanfacine are often given to treat sleep issues associated with EDS. Those two also work to treat EDS dysautonomia. Other EDS dysautonomia medications include beta blockers, Ivabradine, or Mestinon. Mestinon can also treat gastroparesis and digestive dysmotility issues that are associated with EDS.

[@simonram8505]

@@Dulcimerist But these are meds for blood pressure. How do they make sleep deeper and restorative?

[@Dulcimerist]

@@simonram8505 Guanfacine and Clonidine signal the body to not release so much norepinephrine into circulation, which calms the sympathetic nervous system and "fight or flight" response. This makes them popular for prescribing off-label for sleep and anxiety issues - especially in pediatric patients, since these two have fewer side effects or risks of addiction and dependence than typical sleep and anxiety medications. Both of these medications are also FDA approved as non-stimulant ADHD medications, so they are quite versatile.

[@simonram8505]

@@Dulcimerist Thank You very much for the info! Can I take Guanfacine while on beta blocker (I take Bisoprolol) or I have to stop it first?

[@Dulcimerist]

@@simonram8505 Talk with your doctor, but generally it isn't good to combine the two, since they'd amplify each other's effects and lower heart rate and blood pressure too much. My beta blocker was replaced with Clonidine, and I'm glad to not have to deal with beta blocker side effects (depression, hair loss, nightmares, poor sleep) anymore. Beta blockers keep norepinephrine off of only the beta adrenergic receptors by binding to them, while Clonidine and Guanfacine prevent the surge of norepinephrine from being dumped into circulation in the first place.

[@1980keb]

How do you quantitatively measure Sympathetic/Parasympathetic activity?

[@deannaf546]

24hr urine test maybe?

[@Ryan-fn3vr]

Not sure how they measure it medically, however the app Welltory gives values for sympathetic and parasympathetic systems based on hrv

[@jul1ann3mari3]

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.

[@jul1ann3mari3]

I have ms I have enlarged adrenal that an endocrinologist follows I have uveitis (eye) I have APS (common with lupus but I do not have lupus, it is a “sticky blood” issue clots are the worry) I have panic attacks I have prescription for. I have some nights I can sleep But sometimes I may not sleep for 3 days. More than once I have gone 5 days no sleep. I had a sleep study and everything said no apnea four years ago.

[@jul1ann3mari3]

I have lymphedema too / But I am a small person. It is about pooling stagnant lymph fluid and Skin issues and painful skin. I have much swelling and have body wide inflammation chronic. I have to take diuretics for erratic blood pressure And the uveitis. I don’t touch salt. I have a lot of issues and I spend a lot of time with deep breathing exercises especially since the pandemic. This is a big deal. You should inhale with your belly rising like a baby and try to fill all the spaces and exhale completely out of the spaces. This will give you strong diaphragm muscles which is good if you have a respiratory infection.

[@jul1ann3mari3]

Benadryl does not work for me at all. - keeps me more awake. I am able to use hydroxyzine.

[@SimiSilver]

What about ketamine for chronic pain?

[@aspenenglish4976]

I wouldn’t risk it if you’re diagnosed with EDS. Everyone is different but we had a crazy, bad experience with it. It was a bit scary and not much scares me anymore.

[@kevinbissinger]

Chuck Schumer is moonlighting as a doctor now?

[@KMx108]

😆 he just needs the glasses. Great talk. I really needed this info. My sleep study was deemed normal with and average of one arousal every 3 minutes...and I thought I slept pretty well that night.

[@aspenenglish4976]

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

[@kengray1291]

What do you think about CBD a a SLEEP AIDE?

[@KMx108]

Works well for me but not all CBDs are the same.

[@saltycrone]

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.