"Neurocardiology: Dysautonomia, Orthostatic Intolerance, POTS & More" - James Glenn MD
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- เผยแพร่เมื่อ 1 ต.ค. 2018
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Dr. James Glenn, cardiologist at Medical University of South Carolina, discusses the disorders associated with both the organ systems involving neurology and cardiology-- sometimes referred to as "neurocardiology". These disorders are common in individuals with Ehlers-Danlos syndrome and other connective tissue disorders, which are co-morbid with Chiari malformation and syringomyelia.
These disorders associated with neurocardiology can include: dysautonomia, other autonomic dysfunction, orthostatic intolerance, postural orthostatic tachycardia syndrome (or, POTS) and more. Common symptoms include syncope (fainting) and other issues related to the "involuntary" part of the brain.
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I’m 16, I’ve been researching and studying about dysautonomia because I have it and when I become older I want to help kids like me who have it...thank you.
Hey samee! Same age same problems 😂
I've had this my entire life. To think of how many doctors I've seen, especially recently, blows my mind. I have been going to a cardiologist for 6 years. Perfect heart, you're an enigma. We don't know why it goes down in the 20's and 30's. Add my G.I. issues, perfect colon, one of the best they've ever seen. We don't know why you just sh*t out 80 pounds for no reason, so it's IBS. Bye. My cognitive situation, my dry skin (my entire body needs Head and Shoulders!, my sensitivity to heat. So tired after doing so little, every day is a MARATHON. Cognitive problems abound. One minute I'm a genius and the next a MORON. The other day, I'm looking right at my daughter and couldn't remember her name! I'm going to be 60, and it's ALL just getting worse and worse. Especially when I get sick with anything. The last recent one a few days ago put me in the hospital. They made no fuss about my heart going from the 40 bpm range bradycardia to 117 bpm tachycardia in a matter of a few seconds. Subsiding and repeating. Then it stopped. WTF was that? What was what? Didn't you see it? And I explained. Oh, well that records he says. I'll go check it out. Yeah, well if he did he never came back and nothing was said about it. It's as if it didn't happen. They didn't even want to hear Dysautonomia or Autonomic Nervous System disorders. I showed my cardiologist that my symptoms fit. He instantly snubbed me and exclaimed, "You don't have that!" Really, you're a neurologist and you have a crystal ball that tells you what people have and don't have instantly? I'm a FREAK and can't imagine living this horrible, inhumane non-quality of life for the remainder of my years. I've had the syncope and heart thing, sensitivity to heat/excessive sweating which has now morphed into barely any sweating and a body that is constantly shedding skin cells. It SNOWS every time I change my clothing. Some things have been happening sporadically as long as I can remember and were mostly manageable and not so life-ruining, so 5 going on 6 decades of this sh*t going undiagnosed. I wasn't diagnosed with syncope until I was in my 20's even though I had several episodes a year since I was a small child. I'm F*CKIN TIRED of all of it, especially the lack of empathy and caring in the medical field. Seems as I got worse, so didn't the medical system. It's mostly corporate/for-profit now. Anyone need a guinea pig????
I'm so sorry. That's a lot to carry around. I totally understand your frustration with doctors missing these problems.
Do you know what they call us zebras? Doctors have been taught that when they hear hoofbeats to think horses, not zebras. Well, that works until you meet one of us! A group of zebras are called a dazzle. So welcome to the dazzle.
I know that I can't fix your problems. In fact, I have these problems too. However, if you want tips, tricks, or if you just want a shoulder to lean on, please feel free to private message me.
All my best! Kara.
I feel your pain....almost the same story....with doctors.....back then they just didn't know shit from shit...I suffered for 17 yrs before I got a diagnosis of POTS...fast forward it's so damn bad, I can't work or drive...I don't even go shopping alone....meds don't work anymore....I'm pretty much fucked, screwed and tattooed....life sucks and ain't getting any better...I applied for SSD but I'm still waiting on that...I would love more anything to be better and be able to work again... sitting at home everyday is for the birds
There's a gene for the Nav1.5 sodium channel, SCN5A, that is linked to IBS and heart rhythm problems. There are probably other genes related to sodium channel function which might cause similar issues. Have you had any genetic testing? {there's also a drug that acts on the channel, flecainide}
Ever had elevated AST or any other liver enzyme elevated ?
could be missing an enzyme within your liver, that doesn't mean you have fatty liver or even enlarged liver to be happening
Or bechets something autoimmune thats effecting skin and mucus membranes (since the "idiopathic " IBS )
Or could've a virus you got years ago coming back at random
A lot has been learned since covid with lots of new diagnosis of POTS
I haven't been diagnosed yet, but my blood pressure is often really low like 60s/40s, constantly dizzy and I have tremors 24/7 and convulsions once or twice a month. Showers are difficult and make me so dizzy and short of breath. I also had an intense skin reaction when my symptoms started and get worse every year. What started on my Scalp is now spread to my ears, neck and face. The skin is a completely different texture in all those areas and is constantly flaking off.
I run tests on myself every day because I got sick of Dr's not helping me. I found on my own that lots of salt and keto friendly electrolytes help me. I've also found certain strains of cbd oil help me and take away the tremors within seconds. I make my own now and have been focusing on the specific cannabinoids in steins that work. It's easy to order electrolytes or cbd oil online and see if they help. My heart goes out to everyone. I don't have many people around me that support me, so I get how lonely it can feel. This thing has robbed me of a partner, children and a normal life. It makes me so sad all the time. My mom does support me, but she's old herself. She's everything to me. We should all remember we aren't alone.
By the way, GREAT presentation. None of them are boring when the subject is relevant to YOU. So BRAVO!!
So many people talk about POTS but never talk about IST.
I have IST and it’s so similar but people never think it’s ‘as bad’ as POTS even though it’s constant tachycardia and blood pressure problems.
I also have neurocardiogenic syncope
Thank you for giving validity to your patients and for advocating for them!
Friend of mine got mistreated with diazepam for 7 years, she got addicted with constant headache and she is now loosing her mobility and some of her physical senses
I hope they do find a cure or something that at least works, so my two daughters who are showing signs of it now won't have to go through what I went through my whole life....passing out everyday is no joy ride, not being able to keep a job is no joke either
Does one of the 13 types of Ehlers Danlos syndrome run in your family?
There are new POTS medications being researched, so there's hope. Pyridostigmine during the day and Guanfacine before bed work well for me. Other POTS patients respond well to Ivabradine, Clonidine, Atenolol, or Propranolol.
@@Dulcimerist probably not, I don't know if any other family member having the same symptoms as me and my two daughters and I've never heard of that term before but I'll definitely look in to it✌️ thank you 💕
@@mandie1109 The group of Ehlers Danlos syndromes (EDS) are hereditary collagen-based disorders, which often cause dysautonomia/POTS and other issues. Most doctors are confused by the different types, and often don't know how to identify or diagnose it. If you and your daughters have joints that are more flexible than most people and tend to be a bit more prone to sprains or subluxations, you could check out the diagnostic criteria for hypermobile type Ehlers Danlos syndrome, which is the most common type.
@@Dulcimerist oh I have heard of the flexibility part ... That Ehlers Danlos is a new term to me, never heard about it until you said something about it! Me and youngest daughter is hyper flexible 😁. I used to sprang my ankle alit as a child and she is currently going through that as well. Often walking around with her ankle wrapped up. I'll definitely check into it! Thanks again 🙏
@@mandie1109 It sounds like it would be worth having checked. Keep in mind that many doctors are confused by Ehlers Danlos syndrome, since there are 13 different types. The most common is hypermobile type Ehlers Danlos syndrome, which is what I have, and it can present differently in different patients. Search up the hypermobile EDS checklist and check out videos on here that go over the diagnostic criteria for hypermobile EDS, to see how you compare. Usually a geneticist is the doctor that would make the diagnosis and be able to rule out the rarer EDS types.
Sweating sucks esp at night when don't want to
But man does NOT sweating suck even more In 103 • summer
I'm not hot in fact I'm never hot I could sit in scalding water and ask for it to be even hotter
In 80 degrees im cold if gets below 73 I'm literally frozen
After 40 degrees my dystonia gets so bad I'm stiff like a plank even my jaw closed shut
When I had a nasty parasite (from touching a puppy at a kennel ) and kidney infection I had ZERO fever and I was dehydrated
I haven't had a fever for any temp raise since I've was pregnant 4 years ago
I can stand outside in the sun on a 103 and NEVER sweat OR get overheated ??
Wtf and my ancestry is all cold as hell places like Norway and Sweden
30 year old female with severe spinal cord injury
No brain involvement for me except from the injury to my neck and thoracic
I have dysautonomia from spine trauma and it still presents the same as a brain issue
Fainting ,pots ,mini seizures , BP going up or down at random , neurogenic bladder and stomach
All from injuries that could've been one hundred percent been avoided if I didn't have to wait two years for a surgery resulting in a vertebral collapse thanks a lot Medicaid
I have to pee through a CATHADER because Medicaid got so many cuts took me years of appeals to get the surgery
THANK YOU PAF.ORG and MJF moves foundation again for saving my life
All I wanted was to be able to hold my daughter again and you gave that to me
I'm bedridden with ME, EDS, Pots. No one here knows what any of this is or how to help me. How can I get help?
@Michele Krisko thank you!
For me personally, propranolol (The original beta blocker) has been nothing short of a miracle
Same! 😢
I have EDS with POTS and other issues as well. Pyridostigmine helped my POTS and digestive motility issues a lot, and I take either Guanfacine or Clonidine before bed to address my hyperadrenergic POTS and to also help me sleep better.
I want to know who the doctor is in the audience . He sounds like the guy I need to call and hire.
This is helpful, thank you.
Is it possible to have both types of POTS?
Carolyn Boughman yes
This is a great subject. It might not help me now but I want to get one answer...when back surgery is done, not only is the body overstimulated like an electric chair but also cauterizing is literally burning the body. Is the burns Institute involved with care? Certainly more answers were here long ago. I see the resolve results not as well as needed. As experience of this I still feel the equipment use damage that occurred about 4 days ago. This needs total prompt care.
35:00 Uh, oh. I got that test from Germany. I was positive for A1 and M4. But, if everybody is positive for that then that is a problem. It cost about $400 I believe.
Is this doctor still in practice
Who is the person talking at 46:40?
I was wondering the same thing. Who is that? He also mentioned estrogen/progesterone shifts and inflammatory response. Like clockwork my tremors/spacticity gets so much worse the week before my period or week of. Light sensitivity and involuntary moments with migraines and then convulsions...yet it's all in my head.
@@Sara-worldI have had numerous episodes of anaphylaxis on the first day of my period, and then migraines anytime before and during my period. POTS symptoms also worse at this same time. Have read research info that showed people who have asthma attacks that it is also mostly likely to happen the first day of their period in women. I know I have issues with too much histamine and MCAS and all of this IS related.
Connection not studied: childhood vaccines and effects like these. Would be amazing but won’t happen
Could it be small fiber neuropathy affecting the autonomic nerves in the legs especially the calves, that is not pushing the blood back up to the heart as efficiently as it should when moving from lying down to either sitting or standing, which the heart has to beat far more to to make up for inefficient autonomic nerves in the legs. Just a htought.
Vascular return /retrograde ....
What?
Dose this make you feel hot all the time ?
40:21 It's Cristiano Ronaldo when he was at Real Madrid.