"Autonomic Dysfunction in Ehlers-Danlos and Related Syndromes" - Alan Pocinki, MD
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- Опубліковано 1 бер 2020
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The primary job of the autonomic nervous system (ANS) is to maintain balance in the body and to respond to biological stress. It governs a lot of our involuntary bodily functions, or bodily functions that we do not consciously change. For instance, the ANS controls your heart rate, digestion of food, and breathing. When this system gets out of whack, sometimes called "dysautonomia", it can cause some pretty irritating symptoms that can affect any number of organ systems-- often making it hard to pinpoint a diagnosis or cause.
Dr. Alan Pocinki describes dysautonomia symptoms common in patients with Ehlers-Danlos syndrome and similar conditions like Chiari malformation. While the biological mechanisms for these symptoms are still not well-understood, there are real options available for patients who would like to try and find relief. Dr. Pocinki describes these options and what to look out for in patients with these symptoms.
This presentation was given on January 4, 2020 at the Medical University of South Carolina in Charleston, SC. (2020)
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I can't imagine having a medical partner like this guy. What a gift he is to us all. I was dysautonomic for decades and full-blown POTS for a few before I healed myself well enough to sort of think straight and figure it out. My docs blithely agreed. I just saw an expert that agrees with my Hypermobile Ehlers Danlos assessment. It took me 40 years of highly symptomatic life to figure this out. People who bump into this guy are potentially saved decades of suffering. Give him a medal.
I feel like you peered in my life and described my normal. My docs didnt know what to do with me. I feel like I have permission to rest now rather than just push through.
🎉This is the BEST summary of DYSAUTONOMIA I have come across and I will use it to share with others including Parkinson’s support groups as 40% of people with Parkinsons also have dysautonomia.
I have hEDS and extreme DYSAUTONOMIA to the point of having to have a Foley catheter inserted every night. I have been on a gluten-free dairy, free egg, free diet since 1991. I walk 2 miles a day and do Pilates three times a week. I look absolutely fantastic …..So it has taken 45 Years to get my diagnosis!!
I can’t stress enough how important it is to keep moving. If you can’t stand up long enough to exercise get a recumbent bicycle or swim but keep moving and stop eating inflammatory foods like gluten and dairy that her body doesn’t need.
Ah ha! Stumbled across this talk as I was searching for some answers as to why my blood pressure, body temperature, heart rate fluctuate like crazy and I have completely un-refreshing sleep (cumulative 1hr interruptions over 8hrs sleep). I’m chronically exhausted all day, lousy joint pains, take a bit of exercise and floored for a week. All this for two and a bit years following my first Covid-19 infection.
I had to connect the dots on my own pathology with this, and asked for propranolol....which has alleviated every last symptom. It's been nothing short of a fix-all miracle
I was describing to doctors the core symptoms mentioned in this lecture nearly verbatim for years prior to having any clue about autonomic function. I was always dismissed as just having general anxiety/panic disorder. I was describing daily lightheadedness, extreme fatigue, muscle tension, digestive motility issues (chronic constipation), what felt like adrenaline surges that wouldn't subside for hours on end, shortness of breath that wouldn't be alleviated with attempted deep breathing techniques etc...
I always tried to explain to them that I have a pretty rational and calm mind, even despite these symptoms, and there didn't seem to be a psychological trigger or catalyst.
Seeing this lecture really solidified for me that you really are your own best advocate. I was 100% on the money with my own self-diagnosis and subsequent treatment. Thanks for uploading this ♥️
Did you have bad brain fog on top of your symptoms? And if so did that alleviate with the propanol? I've had the same problems all my life mainly the chronic constipation and brain fog. Im at a point now where I cannot work due to my fatigue and brain fog. Ive also noticed my extremities always being cold and my blood pressure will sometimes spike high. Im just wondering if i should ask my doctor for the propanolol
@@musket1122 I had almost daily brain fog, sometimes to the point of disassociation. When your body is constantly producing cortisol an adrenaline, it takes its toll.
Definitely ask your doctor. I'm still on 20 mg a day (10 mg every 12 hours). No side effects other than some strange dreams from time to time, and all of my previous symptoms have yet to flare up.
I'm obviously not a medical doctor, so I shouldn't be giving you advice, but from my own personal perspective/experience with it... and a few others that I know have taken it in the past or are on it now, Docs often try to stick you on a 60 to 80mg dose as a standard out of the gate. For myself and those that I know, that was way too much. 20 to 40 mg a day seems to be perfect, unless you're prescribed it for hypertension.
Keep me updated if you decide to try and get on it
@@tmorelli1982 Thank you for responding. I definetely feel like I fit the bill with this. Last thing, how was your sleep before and after taking this? I usually sleep through the night however I always wake up feeling unrefreshed. I was just wondering if it can improve that part for myself
@@tmorelli1982 Both doctors I talked to refused to prescribe me 10mg even after I pleaded with them. I'm unsure what to do next as I am so disappointed. I really feel like this could help me.
@@musket1122 take a look.at Dr schubiner tms
😑 well this explains everything that has been happening to me in the past decade. Funny not a single one of my medical providers ever mentioned this issue. They have however told me it must all be in my head.
This is, unfortunately, not uncommon. If you ever feel like you are being dismissed, it is absolutely your right to find a new provider! Learn more about patient rights on our website: bobbyjonescsf.org/patient-rights/
As they bill the piss out of everyones’ insurance companies. It’s a racket.
@@BobbyJonesCSF
What viable providers would that be? Kentucky doesn't have a geneticist taking new/adult patients. I forced an appointment in Tennessee, and was calmly told that, as I have no children, I wasn't a priority. 🙄 I waited 58 years for diagnosis, now cannot get the additional referrals. OI, pharmacogeneticist, Mast Cell? I read, learn... and dang well live with it. No help.
Thank you for what you do. It matters.
My neurologist can't figure out what's wrong with me. It was diagnosed as fibromyalgia first, then it turned to an ms diagnosis, then they said I don't have ms but there a lesion on my brain and ogiclonal (however you spell that lol) bands in my lumbar puncture. I hurt all over ever single day, I have chronic migraines, bottom center of my feet itches when I lie down, my digestive system doesn't work correctly, I have gastroparesis, sleep apnea, arthritis, GERD heart palpitations with pain that radiates across my chest but my heart is fine, I have severe knee pain with nothing showing up on xray, a tender knot on my neck that did an mri on and said there's nothing there, my weight goes up and down, I get dizzy sometimes if I try to get up to fast, they even tested for lyme disease and it come back borderline.....i just want to know what in the world is wrong with me.
@@amberpatterson9077
Look into the Ehlers-Danlos Society webinars here on YT. Pay attention to cervical vertebrae instability, dysautonomia/POTS, Mast Cell Activation, vagus nerve, and so on. Educate yourself... we all have to, in this mess.
I'm in the same fix. Hang in there, gal. Stubborn wins the race.
Thank you so much for posting this!
This is so informative! Thank you!
Thank you.
Sweet, agreed,thank you. Life will NOT be better.I have these +20_30 other things. I,m in u.s. it will Not get better they should shoot me.
Was LDN mentioned in the presentation? I don't know if I missed it.
So happy to see the research study I applied for put on this presentation. Such helpful information.
Thank you.
Low dose naltrexone
I know what it is. I was asking if it was mentioned in the presentation, as I wasn't able to watch it fully.
Great question = LDN?
Thank You 👏👏👏🌹
I love hearing these case studies! So interesting!
Do you have a list of doctors across the USA, because the doctor in the video is not accepting any new patients? @BobbyJonesCSF
Is there a way to download these slides? I’d love to have them and share them
Unfortunately, we don't have the slides saved. We apologize! Feel free to screengrab, though! We want this information shared, as well.
My son had hyper mobility since childhood and after a severe infection triggered chronic stiff muscles, chronic fatigue, developed kyphoscoliosis and he is showing symptoms of adrenal fatigue and EDS. So what is the right approach for the stiff muscles if it's holding loose joints? And what to do generally?
I have had the same stiffness with hypermobility.
Pilates is perfect. Generally, use those muscles to stretch gently without doing anything that feels as if it may stress joints.
Kentucky has no such help.
I'm pretty sure I watched my mother and sister both die from undiagnosed Ehlers-Danlos comorbidities and complications. Now I'm there, myself... and no medical help at all. Starting with PCPs. EDS? I forced the appointment, out of state. Confirmed, too.
Pursuit of happiness, my ... saddle. 🙄
I'm a sticklers syndrome type 2 I had a knee replacement and since my autoimmune system has gone nuts reynaud effects one ear will turn bright red I have anxiety high partial cleft palate my right hip collapsed at 23 avascular necrosis left hip at 27 my L3 L4 L5 are grade severe almost surgical. I've been diagnosed with ADD Borderline personality disorder bipolar type 1 PTSD glaucoma cataracts. I am lost on how to fix myself. I have 2 sons who also have this horrible disease! I'm only 41 but most days I feel 91. How do you get any quality of life? I'm really asking!! I also have diarrhea and or constipation consistently i thought it was from emergency open cholecystectomy
My ear turns bright red. Have you been checked for mast cell activation disorder .
Dr Shubiner tms
People like me read and watch Dan Neuffer. Full of recovery stories
Hmmm?
Thank you.
You're welcome!