I FINALLY understand SO MUCH MORE about my life, fears, humiliations, and loses! And how my multiple surgeries, dislocations, subluxations, pains, sprains, scars, hospital stays for mysterious reasons, and veins breaking a million times when IV or blood work was necessary, splattering blood all over... AWFUL POTs since I am 8 (when I began to be very aware something was the matter) being able to swim in VERY cold water for long time but not being able to drink hot liquids or tolerate a hot day without passing out, not being able to sweat, etc etc etc, are connected! Most definitely not by collagen, but the lack of it. My lack of collagen is the glue that glues all my symptoms together!
Also, any thoughts about what could link POTS, post-viral sindromes such as ME/CFS (and apparently now long covid, which seems to me a form of ME/CFS), hypermobility (eg. Ehler Danlos) and small fiber neuropathy? These four conditions are very frequently comorbidities and I am wondering what is the link? Many thanks
I wish I as him. Right now with my severe pain and weird gut problems I know cane on post face down fall as I am still traumatised by the fall and I get horrible pain but little movement I can’t eat but I have to
@@TheEhlersDanlosSociety I can't get the link to work for Dr. Henderson's slides. Assistance? A new link? Thanks! Update: found PDF of slides on your website by Googling...but link update still good.
@@TheEhlersDanlosSociety thank you! For this information and slides I have cfs/ fibromyalgia /cptsd this is very helpful. I've had many of these symptoms since childhood. Very much appreciated
Anyone: How do I find a doctor specifically for cranial instability with Dysautonomia and related disorders? If you’re knowledgeable, what terms would you suggest I use to search in my area for a doctor?
You're looking for a neurologist with a focus on your primary diagnosis, PTSD,EDS,etc... I would Google these terms then get a referral from your regular doc. Hope that's helpful.
Dr. Ross Hauser has fixed more upper cervical instability than probably any doctor in the world. He has many very helpful youtube videos related to both upper cervical instability and Ehlers Danlos.
#1 wouldn’t group HIV into Autoimmune disease. #2 EDS and Mito I would group into hereditary or genetic disease. #3 I would characterize Lyme, TB and Botulism into infectious diseases
Does anyone else with dysautonomia not feel the temperature or touch of their hand or hands on their body or face? Also, does anyone else with dysautonomia have lack of sensation in their head AND/OR lack the power to or doesn’t yawn when tired? Lastly, does anyone with dysautonomia find it difficult to keep to a schedule and details?
Does anyone else with dysautonomia feel that their head is detached from their body? Does anyone else with dysautonomia deal with histamine sensitivity?
I was not properly diagnosed until I was 60 after pushing thru pneumothorax’s, placenta abruptia, polyneuropathy , insane headaches caused by brain sag at 10cm… burning pain in spine, trigeminal neuralgia… gastro issues beyond severe… The worst part, the gaslighting by doctors because of their own ignorance… My half sister died from Chiari at 43… My mother had scoliosis and many of the symptoms I had… As Yankees we touched out far too much.. She died when a lead tore her artery … My daughter too has this.. Bottom line, had I known I would Never had had a child knowing what I could pass on to her… European studies were far ahead of anything I found in New England… An awful, terrible, way to become totally disabled..
he is with the metropolitan neurosurgery group in Maryland. He does not take insurance😢looong wait list. I'm on it 3 months now without an apt set up yet. He only sees 2 hypermobility patients a week. I know this is it! I have been saying it's my neck/skull for 20 yrs. I just got tired of lay down mri and CT scans and Drs saying everything was fine so I gave up ..until things got much worse. of course this gave researchers time to actually figure it out lol
![🔴 ฟุตบอลแชมป์กีฬา 7HD แชมเปียน คัพ 2024 [รอบรองชนะเลิศ]](http://i.ytimg.com/vi/zPm8ClLVhoE/mqdefault.jpg)
After watching this presentation I feel I know more than doctors in my country.
I FINALLY understand SO MUCH MORE about my life, fears, humiliations, and loses! And how my multiple surgeries, dislocations, subluxations, pains, sprains, scars, hospital stays for mysterious reasons, and veins breaking a million times when IV or blood work was necessary, splattering blood all over... AWFUL POTs since I am 8 (when I began to be very aware something was the matter) being able to swim in VERY cold water for long time but not being able to drink hot liquids or tolerate a hot day without passing out, not being able to sweat, etc etc etc, are connected! Most definitely not by collagen, but the lack of it. My lack of collagen is the glue that glues all my symptoms together!
What an intelligent and educated dr I wish all drs were like him. And I wish this dr was my dr in need a good dr badly. Thank u for sharing God bless
What an incredibly talented Dr. I got so much out of this presentation, Fabulous thank you.
What a fantastic webinar. Such an articulate and bright presenter. Just loved it and really needed these clarifications. Exceptional! Thank you.
This was explained so well
Makes so much sense now. Thank you!
Its great someone knows the relationship, but fixing this is the challenge.
Also, any thoughts about what could link POTS, post-viral sindromes such as ME/CFS (and apparently now long covid, which seems to me a form of ME/CFS), hypermobility (eg. Ehler Danlos) and small fiber neuropathy? These four conditions are very frequently comorbidities and I am wondering what is the link? Many thanks
There’s a book called “what really causes pots” check it out, its part of the puzzle I believe.
CFS is from polio vaccine. Look up Judy Markowitz (sp?) She discovered it.
@@darlenemestas8347 yes I know the story. Unfortunately there is no evidence for that though
@@fedfin3869 you must not have seen the video I saw then. Buut thats fine.
@@darlenemestas8347 I never had the polio vaccine, but still have CFS.
Any chance of getting a copy of the slides from this?? :-D
Yes. bit.ly/37zvtAk
I wish I as him. Right now with my severe pain and weird gut problems I know cane on post face down fall as I am still traumatised by the fall and I get horrible pain but little movement
I can’t eat but I have to
@@TheEhlersDanlosSociety I can't get the link to work for Dr. Henderson's slides. Assistance? A new link? Thanks! Update: found PDF of slides on your website by Googling...but link update still good.
@@TheEhlersDanlosSociety thank you! For this information and slides I have cfs/ fibromyalgia /cptsd this is very helpful. I've had many of these symptoms since childhood.
Very much appreciated
@@janetatum8966just take screen caps of the slides. You can pause the video and take them.
Fantastic lecture
My wife has HDS and most of these symptoms plus Dyspraxia. I notice he mentions bumping into doors. Surely this must be related?
Anyone: How do I find a doctor specifically for cranial instability with Dysautonomia and related disorders? If you’re knowledgeable, what terms would you suggest I use to search in my area for a doctor?
You're looking for a neurologist with a focus on your primary diagnosis, PTSD,EDS,etc... I would Google these terms then get a referral from your regular doc. Hope that's helpful.
@@Jeff1972-n5x thank you for taking a moment of your time to help-I hope you have a triumphant day 🍀
Dr.ross Hauser in ft. Myers fl. That's where I go
@@michellemustari498 has he helped?
Dr. Ross Hauser has fixed more upper cervical instability than probably any doctor in the world. He has many very helpful youtube videos related to both upper cervical instability and Ehlers Danlos.
#1 wouldn’t group HIV into Autoimmune disease. #2 EDS and Mito I would group into hereditary or genetic disease. #3 I would characterize Lyme, TB and Botulism into infectious diseases
Does anyone else with dysautonomia not feel the temperature or touch of their hand or hands on their body or face? Also, does anyone else with dysautonomia have lack of sensation in their head AND/OR lack the power to or doesn’t yawn when tired? Lastly, does anyone with dysautonomia find it difficult to keep to a schedule and details?
They say my neck is shaped wrong! I’m having always trouble with temperature pain dizzy, faint feeling rapid heart!i think they said a the wrong way
Is this guys name Dr. Ross Hauser?
Great talk!
EDS DX in 2014 after several operations my bodie can not maintain a normal blood pressure low real low after surgery
Does anyone else with dysautonomia feel that their head is detached from their body? Does anyone else with dysautonomia deal with histamine sensitivity?
I was not properly diagnosed until I was 60 after pushing thru pneumothorax’s, placenta abruptia, polyneuropathy , insane headaches caused by brain sag at 10cm… burning pain in spine, trigeminal neuralgia… gastro issues beyond severe… The worst part, the gaslighting by doctors because of their own ignorance… My half sister died from Chiari at 43… My mother had scoliosis and many of the symptoms I had… As Yankees we touched out far too much.. She died when a lead tore her artery … My daughter too has this.. Bottom line, had I known I would Never had had a child knowing what I could pass on to her… European studies were far ahead of anything I found in New England… An awful, terrible, way to become totally disabled..
Bonjour, avez-vous une traduction de cette conférence en français, s'il vous plaît ?
I think there is a function to do auto translate and sometimes you can even choose the language setting on videos too.
Where is this doctor
he is with the metropolitan neurosurgery group in Maryland. He does not take insurance😢looong wait list. I'm on it 3 months now without an apt set up yet. He only sees 2 hypermobility patients a week. I know this is it! I have been saying it's my neck/skull for 20 yrs. I just got tired of lay down mri and CT scans and Drs saying everything was fine so I gave up ..until things got much worse. of course this gave researchers time to actually figure it out lol
What doctors do you even see if you have this?
(Functional) neurologist for one.
So what to do about it
👑🙏
Does childhood trauma cause dysautonomia?
I wonder about that, too.
I went down crazy town crazy crap
WHAT ABOUT BRAIN LEAKING
He sounds like he has Covid.