Dr. Alan Pocinki presents “Psychiatric Misdiagnoses in EDS: When is Anxiety not Anxiety?”
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- Опубліковано 7 чер 2024
- His patients have voted him one of the “Top Primary Care Doctors in Washington” in a leading consumer magazine, and his peers have similarly voted him one of Washingtonian magazine’s “Top Doctors. Learn more at: www.chronicpainpartners.com/we...
Thank you so much for this presentation. I was diagnosed with anxiety, adhd, and later bipolar due to “hypo mania”. I now have my proper diagnosis of hEDS. I sincerely wish more psychiatrists were informed about Ehlers Danlos.
I have hypermobile type Ehlers Danlos syndrome with POTS and a previous anxiety diagnosis. I reacted poorly to beta blockers, but alpha-2 agonists like the Clonidine (or Guanfacine) mentioned in this video were the miracle medication for me. Clonidine and Guanfacine are non-stimulant ADHD medications which are generally taken before bed and can also treat insomnia. They signal the body not to dump so much norepinephrine and adrenaline into circulation, which in turn calms the "fight or flight" panic and anxiety response.
Same here kinda =|
Doc who gaslit about EDS briefly tried clonidine for my anxious lil daughter when she was in early days of school but we stopped fairly quickly cause of dry mouth and eyes .. any tips or is that just a sign it's not for her ?
@@etherspin Dry mouth is a common side effect. My daughter was switched from Clonidine to its sister drug, Guanfacine, and did much better. Guanfacine has fewer side effects, and does pretty much the same thing as Clonidine. I responded better to Clonidine. People aren't identical to one another - each one of us is a unique individual who might respond differently to something than another person. Perhaps your daughter is a Guanfacine person.
Did this help pain symptoms
Thank you all, I appreciate your time and work ❤️
I was in psychotherapy for years, but with medications and psychotherapy and learning every trick in the book to healthy thinking and I still couldn't stop the "panic attacks" and the "bipolar" I felt more like I was losing control than ever before. Then I lost my insurance. No more meds, and things started improving. I focused all my energy in getting insurance as I'd just learned of EDS and had an appointment with a specialist. I got it back, saw the specialist, am confirmed with HSD and waiting on some tests to know if it is or isn't EDS. When I stopped thinking about my symptoms as psychiatric and started looking for dysautonomic factors suddenly I was able to see patterns I struggled in finding before when attempting to address these issues. When seeing things clinically I was able to start addressing things from a health perspective, and so many symptoms cleared up. I've still got many, but I'm only a few months into getting my treatment set up and the tests needed done.
well-put.
God works in mysterious ways🙌God bless us all🙏⚛️💝
Could you possibly offer any more specifics. I'm currently in this very situation and it's awful
@Jynxedlove I wish I could download everything you know about this disease. I was just diagnosed after 10 years of misdiagnosed diseases. I've had several bone marrow biopsies and aspirations, 2 rounds of chemo, several other painful tests and surgeries, etc. Now I have yet another disease to learn everything I can about and frankly I'm too sick and in too much pain to do it again.
@@Rls_0523 where is your pain
I was only diagnosed with EDS after my anti-anxiety meds werent working. My psychiatrist suggested that the anxiety may not be anxiety, but instead, have a physical cause. He gave some great advice, which is to see a doctor you've never seen before to get a "new set of eyes" on the problem. That new doctor diagnosed me with EDS, and put me on beta blockers. Havent needed a xanax since.
Jen, what type of doc did you see that finally diagnosed you correctly and saw that you needed the beta blockers?
it was a cardiologist; which was happenstance. You can get beta blockers from any general practicitoner. that said people with EDS should see a cardiologist and get echocardiograms because of possible valve laxity
Wow I've been struggling with anxiety forever and SSRI's stopped helping - last year got diagnosed with joint hypermobility syndrome (I know there is a lot of cross over with a type of EDS) and just started beta blockers after convincing a doctor after reading recent studies. Hope it helps me too :) p.s I also have POTS
@@superwelshgandalf hope you are feeling well! it can take time to find the right combo of meds that work for you)
I have hypermobile type Ehlers Danlos syndrome with POTS and a previous anxiety diagnosis. I reacted poorly to beta blockers, but alpha-2 agonists like the Clonidine (or Guanfacine) mentioned in this video were the miracle medication for me. Clonidine and Guanfacine are non-stimulant ADHD medications which are generally taken before bed and can also treat insomnia. They signal the body not to dump so much norepinephrine and adrenaline into circulation, which in turn calms the "fight or flight" panic and anxiety response.
I have EDS and so much of what was discussed here pertains to me personally. I feel like I got answers (and now if I could only get my doctors to listen to this)!! Thank you!
So what are your answers from this talk? Rest, take pain meds, extra salt? You think that will cure you? And why get your doctor to listen to simplistic advice like that? I'm sorry but I don't see this talk as scientific. IMHO it's just anecdotal. I'll wager that nothing in this talk will help anyone.
@@JohnBedson Do you or a relative suffer from EDS?
@@simonram8505 Yes.
Yeah! This is one of the best EDS presentations out there, since it explains why EDS patients are often misdiagnosed with psychiatric disorders and the actual causes of those issues. It's also empowering for EDS patients, since it validates their medical condition and vindicates that their issues aren't "all in their head". The Clonidine mentioned in this video changed my life, as it addressed my EDS-related POTS, insomnia, anxiety-like symptoms, migraines, restless leg syndrome, and reduced some of my pain.
It mattered alot
Thank you so much for this. Everything said here describes me perfectly. I had always been treated like my "anxiety" was completely irrelevant to my EDS.
How many of your patients come to you taking adderall and clonazepam and Wellbutrin and Zoloft? Literally exactly my 22 year treatment regimen and when I make it to physical therapy for my EDS they asked what my goal was. I told them I wanted to work on sitting up. They thought I was joking. I wasn’t. This is exciting info to say the least.
Ouch! Those medications can make EDS dysautonomia worse. Two of those are on my adverse reaction list in my medical records. Hoping you're doing much better now!
They do not work for me either just finding out the degree of tentacles here. Have so many different sides if this
For example, Chlordane, a Pesticide termiticide manf by Genovique Specialties/Kodack is well documented to cause Mast Cell Activation, it was commonly used to treat under homes. Mold and Trichothecene have also been implicated.
I love all the videos with this doctor! He explains everything so well and clearly!
Oh my this fits me to a T . I'm 41 I just found out I have eds . It came about 1 yr go when I dislocated both ankles in less than a month of each other just walking . My physical therapist noticed it because she has eds. I'm in SC and I need a specialist that knows about eds. I have been diagnosed with all of the misdiagnosed that you mention down to PTSD the starring seizures and even the salt . I've had 26 surgeries since I was 15 . Was even on life support last year for a hospital causing fluid in both lungs trying to fix my hernia. Which is large . I' have to have Botox in bladder . I need help . My family has turned against me because of my ups and downs. I keep trying to tell them I'm in pain I'm tired and I'm not crazy . I've been in full disability for 11 yrs but my husband has made me work saying I'm not disabled. . I'm tired . I just got married for the first time last year now my husband wants nothing to do with me. I can't make no one understand how I feel . I was diagnosed through greenwood genetics
Ime 42 trying get diagnosed I have hypomobilty Asperger's to I believe pain 25 years very hard going to try ldn hope you are coping ok
Dr. Robert G. Schwartz in Greenville, SC diagnosed my joint hypermobility (hypermobile EDS).
Great speech! this is so well explained!
Thank you for your excellent presentation, Dr.Pocinki! You gave me many insights!
Thank you for this. Not so much for myself but to help others understand what I know to be true in my 8 year old daughter.
Thank You for this!!
This is so helpful!! I'm super interested in this topic. It explains so much about what my mom and I have been experiencing. Thank you for spreading the word. Now to find a doctor who's willing to help 😬😬😬😂
After watching a few of Dr. Pocinki’s videos, I’ve realized I wasn’t just burned out by working too much, I’m also dealing with dysautonomia. He mentioned in another video that spikes in adrenaline set off migraine in younger women. That plus these vagal gut attacks (chills, cramps, diarrhea) all describe me pretty well. I’m also understanding now why electrolyte drinks like LiquidIV help me so much.
Very glad to have found this information, thank you!!! Now to my question: are there versions of this in other languages? Otherwise I don’t know how to get my doctor to understand this concept and help me accordingly…
Thank you for posting this! This makes a lot of sense. While I was a somewhat anxious child (undiagnosed autism and some dysfunctional home life), often I would not feel well and would have physical symptoms seemingly unconnected to being upset over a transition or trying something new. I had a lot of stomach issues, feeling dizzy or otherwise sick, and would get headaches and vision changes. Adrenaline dumps were a regular occurrence for me. Now, after years of being told I was just anxious, I was just depressed, I was this or that thing and of trying anxiety and depression medication and therapy with very little improvement, I'm finally diagnosed autistic and I'm working towards figuring out whether my lifelong symptoms are hEDS and POTs. Because I can count on one hand the number of times I had panic attacks that were actually about something that I knew of. All the rest of these anxiety/panic attacks mirror POTs symptoms or other dysautonomia type symptoms. And yes, I'm hypermobile and was told I was clumsy and was constantly injuring myself doing nothing. I still do now in my 30's. It all makes sense now!
I live in Albuquerque, New Mexico and would dearly like to find an appropriate doctor for this here.
Absolutely great info you could have been talking about me 😮thank you
Thank you so much my daughter has been diagnosed with sleep apnea.
Linda Jones I have sleep apnea and adhd-c...treated for both, still have both.
Have they offered her the sleep apnea surgery where they remove tonsils, adenoids, uvula, and extra skin at the back of the throat? It worked wonders at treating my sleep apnea, and I don't have to use a C-PAP. It's been almost 25 years since I had the surgery, and I'm thankful to have done that. An extra benefit is that I no longer get sinus or ear infections since getting the surgery.
One of our “superheroes”💝
Has any of you follow any diet? For example cutting out, dairy, sugars, gluten and eggs. Does that help you with sleep and dysautonomia?
t y so much !!
Alaska - do you have a reference for doctors in Anchorage
Intro ends & presentation starts at 7:07
Fluffster Normalpaws I have to wonder- do you have a polydactyl cat and one “normal paw” cat? There’s a story behind this name.
I live in NW Florida. Is there a list of doctors to find care in my area?
Dr. Atwal in Jacksonville or Shands
Can anyone tell me.. Can medication that effect norepinephrine make these symptoms much worse? Because that's one of the things I've noticed for me.
How do i contact you Directly? For advice on who to contact where i am
Thank you Dr Alan!!!!!!!
This information is extremely disturbing because it applies to me in virtually every way, yet I have only chanced upon it, with no medical professional having given me a nudge in this direction. What do I do?
Cannabis (indica) is a safe and very good way to get a great, deep, healing sleep.
If there is a CBD oil made from indica I would settle for that. There isn't a source where I live to understand it has to be indica.
@@stacydhein6873 why indica? What does that mean?
How do i get a diagnosis for the correct EDS diagnosis quickly in Ontario for court? How do i get people to take me seriously?
Idk how it works there but you need a geneticist
Give it to The Lord God an watch Him Step in ,Keep the Faith an don't give up on Him He is Our Healer,with Drs being His Tools .❤️✝️
I'm going for chronic pneumonia @ more of a 'Walk-in'/ Hosp-spon- sored Clinic.
I'll ask for another* EKG & that STAT Sleep Lab Clinic Referral, as well.
Good luck!
@@viviannaginwilson2186 oh yeah sure, God is not active.
If He were, don't you think the first thing he would do would be to protect little children from being abducted, raped, tortured, and murdered?
@@viviannaginwilson2186 also, if he healed no one would be ill! Silly
Does this apply to EDS classic?
It would apply to all types of EDS.
I don't know if I have EDS.. But I'm fairly certain I've got an autonomic disorder. Are they always with eds? Or can you have it without eds?? Does anyone know??
there's lots of types of dysautonomia and lots of causes for them, eds is just one possible cause. a lot of people get them as a post-viral thing, and sometimes there's no clear cause. try getting a referral to a cardiologist and/or a neurologist.
Does he have any affiliation with the international EDS society?
I have severe EDS and my question is, are we more prone to mental disorders than other people?
Ibn Falastin Because people don't see the illness, for example, they see our anxiety, and we have anxiety because of our health, but they think our axiety is a mental condition causing all the symptoms.
It's very emotional and hard to take when you have too the fight or flight system going all the time in overtime.
Most of the time it's taxing mentally. Most of the time the mental state is a misdiagnosis.
there isnt much evidence of it, but with the ANS/dysautonomia, it appears to be anxiety. also, chronic pain and fatigue can induce depression.
@@Jkstolz ok
Thank you for your story ,we are many times misdiagnosed an misunderstood ,an without God's hand to finally bring the truth into our life, freedom from our fears, where we can come forth in Healing with Victory Glory to God His Diagnosis is we are healed an I ask Him to Heal each person on here with their diagnosis to be ever so made Whole in Jesus Name ever so made Whole,Heavenly Father bring every Dr.to be open to going beyond just diagnoseing mental. We've been Through enough ,Thank You Jesus,♥️
Any chronic illness - especially EDS which causes, pain, fatigue, and other issues - can make a person more prone to depression and anxiety.
There have been reports that autistic spectrum disorders and eating disorders appear more often in EDS patients than the general population.
Way too much adrenaline!!
Anyone had luck in here with ldn
My friend have this disorder. Propanolol I.e beta blocker would work? Or it is just a hoax?
it works. it blocks the body's response to the adrenal "fight flight" response. One dose works 3-5 hours for most people.
Propranolol or Atenolol can help some people - they keep norepinephrine and adrenaline from hitting the beta adrenergic receptors (those are the receptors the speed up the heart, cause us to sweat, and some other "fight or flight" responses).
Clonidine or Guanfacine are another option that can help people. These signal the body not to dump all that norepinephrine and adrenaline into circulation in the first place, addressing the "fight or flight" response more at its source.
Dehydration totally relatable to a standard American diet the source of 90% of acute and chronic inflammation. The dehydration of the intervertebral discs on human spinal column initiates unnecessary compressive forces on the spinal cord, the cord is what let's the body know, autonomic system. The fascia, the connective tissue of the body lines, membranes, vessels, neuorceptive tissue, musculoskeletal tissue, organs and all. This fascia , its main component is to connect, sustain, flex, and revert, an incredible primary attribute demonstrative of hydration.
#drinkyournutrition, #chewyournutrition
My pains wise if u dint have 3ltr water day dies it help your pain think we need the salt to take water in the spine to don't we
Forgive me for saying this, but in my opinion none of what Dr Pocinki says makes any sense. He's theorising about "energy" or "gas" created during sleep without explaining what this "gas" is or what scientific evidence he has to support what he is saying. Where are the studies to confirm his claims? He quotes none. All he's got is anecdotal evidence that some of his patients recover, which in medicine is worthless.
Sleep restores energy. How hard is that to understand?
@@tjahern727 But what do you mean "energy"? Energy in the body is ATP. Are you saying that sleep increases ATP? What is your evidence for that idea? We burn approximately 50 calories an hour during sleep. So we actually use up energy during sleep. Your statement that "sleep restores energy" is about as unscientific as saying that coffee gives us energy. What is this mysterious "energy" that Dr Pocinki is claiming is increased by sleep? Sleep appears to reorder memories, but that's not increasing energy. In my opinion, unscientific and questionable claims by this speaker do nothing to advance the cause of science. Why did the EDH people give him a "lifetime achievement award"? How did Pocinki further the cause of science? POTS patients know that they awake unrefreshed and with no more energy than when the when to sleep. In my opinion this talk is bunk.
@@JohnBedson When I can't sleep an in bad pain. I speak a Scripture The Word of God says He gives Sweet Sleep to His Beloved.it works.Praise God ,Sometimes we forget the Promises of God ,♥️
3.5 years post, severe to very severe complex/"c-PTSD" & this guy makes 100%, TL Sense, to me! Now, with TRAUMA level of 25% range. It effects All 12 Systems of the Human Body!
Including my 'flat-lined' Circadian Rhythm, more heart issues, neck (vessel blockage?) pain; 'referred' to Ears, now, sore, blocked & 'Full'.
And a quit 'adhd,' in over-drive/full-blown *"ADhD,"* for Far too long! ... POTS, the whole 9 yards.
The "energy" or "gas" is simply putting things into metaphors for laypeople to understand. You're taking this presentation way too literally and missing the entire point.