Peter C. Rowe - Managing Life with Autonomic Symptoms
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- เผยแพร่เมื่อ 13 ต.ค. 2018
- Peter C. Rowe discusses “Managing Life with Autonomic Symptoms” at the 2018 EDS Global Learning Conference in Baltimore. The slides are available in a PDF from bit.ly/2018ConBaltimore (see also Satish Raj - “Understanding Autonomic Dysfunction and EDS” • Satish Raj - Understan... ).
Wowww. I always sat with my knees up as a kid and told my mom my legs hurt when they were down, and she said that was ridiculous. And I couldn’t stand up for music practice and get yelled at for sitting on the floor every couple of minutes. Now I realize my blood was just stuck in my legs!
I wish I could find a doctor that would just listen to me. You explained a lot.
Going through the same thing. Like is this taught in school? What makes the hear function? I'm going through the same thing with a very bad neck injury still no one listens
@@ambersmith8171 I only have to read comments like yours, migraines, neck problems and I feel sick. That awful, sickening tension and headache 🤢 I use a chiropractor, but here in the uk they’re actually doctors. Mine is also a mma fighter, most drs display certificates 🤣 he’s got his belts instead. He thinks it’s funny that I can take more brutal alignments than fighters he is in competition with and he is usually the dr on site too there.
Keep the faith, I am told it is worth it.
bring people with you who will advocate on your behalf
See a cardiologist and give them this link
That lecture just answered a lot of questions as to why I do things. Rocking when standing, hate queues with a passion , sitting with my legs curled up under my bottom , the list is so long it is incredible. Thank you .
I cross my foot when standing more than 1 min.
There’s a company called Pri mark here, they have a dedicated assistant for people with a disability or they have a double buggy/stroller. So, having pots people don’t have to ask if they can be served quickly. Maybe if someone is a bit shy, take a little card to explain why they need it. I’ve never heard them question anyone about it either. They were so kind to me a couple of years ago when I was in there, I felt dreadful, probably at 9 3/4 pain wise, it was winter so I had a warm coat on in a small shopping mall. 4 separate members of staff came to ask me if I was ok and did I need any help, a chair? Drink etc. so nice of them, the person who served me saw me go to join the main queue and called me over. I don’t think I was even thinking properly to think about going to that till. She was another kind member of staff in addition to the 4
14:30 Discussion of treatment options.
33:30 OI is not just deconditioning.
34:20 Addressing contributing conditions.
This was good! Could this also be why I love being in water?? Preferably diving in the ocean, but all kinds of water. The pressure from the surrounding helps the blood circulate!
Yes! The water pressure feels so good. It is like a massage. I live for the summer months when I can use my pool ( in which I keep the water as cold as possible).
First thing I was able to do regarding „sports“ with my me/cfs and orthostaticv ntolerance was swimming. Just getting out of the water is an issue still.
Very good talk talk on Pots. My husband watched it with me and was able to better understand what I’ve been dealing with. Thank you for sharing this vital information with all of us living with EDS and Pots. I always share these videos with my online support groups. 💞💫
This was so helpful! As someone who is living with orthostatic intolerance due to Lyme disease, it was very helpful to know that pain, allergic reactions and adrenal problems all worsen the condition also. I didn’t know that. It was lovely to hear that some of the choices I have made intuitively in day to day life are proven to make a difference, also. Thank you for this video!
17:45 "Avoid really warm environments." I'm watching this in bed at 1:53 a.m. with an ice pack on my chest.
The next morning, I took my dog to the vet, noticed bad pooling in my hands because of how bloody hot they keep the place - This is a vid I'm going to be rewatching and sharing a lot. Already sent it to at least 7 people, along with a link to comrad compression socks! Going to try them out - found via Izzy Kornblau's video, "Day in the Life With POTS."
I have a lot of dysautonomic symptoms (hEDS), but I do not feel faint usually, and my heart rate does not seem to go up too high from just standing up, but I have so many of these other symptoms you talk about. I've no idea how to deal with it, really. No matter how fit I have been in the past, I'd always get very high heart rate with cardio based exercise, and I do all these fidget/sitting/standing things mentioned as I get so exhausted if I'm stood still such as in a queue. I guess there's more than POTS but that has a lot of overlapping symptoms?!
Yes, POTS is just one type of orthostatic syndrome. Others are gradually being named. Sometimes people get a diagnosis of “chronic orthostatic intolerance due to autonomic dysfunction” if their symptoms don’t fit a named pattern. Dr Peter Novak in the US has been doing a lot of research in this area. Dr Rowe and his collaborators have been looking at cerebral hypoperfusion from a different but complementary angle.
You could try to see an autonomic specialist, although I’m afraid wait times tend to be long these days. Your primary care doctor / GP should be able to guide you in some basic interventions for orthostatic intolerance in the meantime.
Can anyone please tell me what search terms I should use to find a doctor who would understand this video and would subscribe to these methods? I want to get as close as possible to a doctor just like this doctor.
Wow!!!
I am blown away
Everyone talks about PoTS as predominantly dizzy spells, lightheaded, ... Which I do not get. Everything else - me on the nose.
I am so grateful for this video
Wonderful talk! Thank you so much for making a point of touching on so many of the topics that many others don’t recognize or don’t even consider could be having an effect.
This explains alot! I wish my doctor new this!
I get all of these symptoms
Im sharing this
@@oedipamaas2067 not self diagnosis. Just saying i have all the symptoms. Im looking for relief from symptoms issues. More than likely mine is from working in chemicals or autoimmune. Either doesn't matter, it is what it is and 👁 have to fight the symptoms regardless. Hyper mobility is a bitch when your joints dislocate and settle back in slow. Inflammation is horrible ect ect ect. Anyway,
🖕👁👁🖕
👅
I was born with this.doctors said it was a missing chemical from the body,I take one tablet every 24 hours if i take it a few hours out it does,not work properly.the tablets have been great.i haven't had a black out for many years.i find if I get really dizzy that salt helps me boost my blood pressure.i went to a specialist at the hospital when I was a child to treat this.i do take florineff.
I was just diagnosed with POTS and Sarcoidosis. But I've experienced POTS symptoms and presyncope since I was a child. It just got unbearable once the Sarcoidosis hit my lungs. This lecture is incredibly helpful. I have started wearing ice packs on my body while I do dishes during August. It's helping a lot. My abdominal area gets SO hot and I start dripping sweat from my scalp. Ugh.
I also have Sarcoidosis, MCAS, Orthostatic Intolerance. I wonder how Sarcoidosis is related to all of this. I see one other person also has Sarcoidosis.
Not sure if you will see this, but I also have pots and sarcoid! Xoxo, lori
What an amazing talk!
excellent presentation with many good recommendations. Thank you!
I was diagnosed with Parkinson’s 5 years ago after suffering from all of the symptoms mentioned here. Does this make sense? I do see a neurologist. I’m unable to stand at the counter to do anything. I feel extremely faint every time I stand. Should I ask for table test?.
Thank you for this video it was very helpful !!
Thank you
Dude! Great talk.
Could this be made worse with altitude changes also? My family and i went to the mountains and Everything seemed ok at first, but later on I thought that i was having a heart attack and couldn't seem to catch my breath. I have always had bad fatigue, abdominal pains, dizzy spells, problems with "zoning out", and inability to do any type of Cardio exercise. Trying to find a provider to get answers or simply a verification feels impossible.
Yes!!! I live in Colorado, it can take up to a year or more for your body to adjust.. especially people with autonomic problems...
I saw Hedi for a medical consult in 2015 in South Bend, Indiana. I have EDS. She was an excellent resource with invaluable information. I highly recommend her as an intelligent and highly professional physician. And I’m not typically a fan of doctors!
The problem is where can we get treatment??? Patients need help.
So many ah-ha moments for me during this talk! I just happen to be on one drug in cach category he mentions just via trying to address my symptoms over the years but no one has ever put this all together for me as being related primarily to one issue.
He just talked about me and my daughters.
Is it possible to have high blood pressure? My orthostatic intolerance presents with the opposite with high BP. Anyone knows? Thank you
Yes. Autonomic disorders can disturb the blood pressure and heart rate in various ways and combinations. (And some autonomic disorders do not affect blood pressure or heart rate at all.)
So blood pressure could be high, low, labile (fluctuating excessively), or normal.
If there is an autonomic cause, an autonomic specialist will be able to tease all this out with a detailed history, testing, and their experience.
19:42 " . . . and if you're urinating more, that lessens blood volume as well."
TOS and compression disorders causing severe autonomic dysfunction to worsen for me. Want surgery to stop plexus bundle nerves setting it off
Does anyone have the list of new drugs that help bring down heart rate. And that doesn't affect blood pressure. Also does anyone have the name of the drugs to bring up blood pressure. My cardiologist said there wasn't any.
Talking about the epudephine that why avoid if you go to the dentist you can request non epuinefril numb medication.
Wow I do literally all of the postural counter measures and now i know why lol
I wish I could wear compression leggings but because of Gastroparesis I can't take the compression on my abdomen.
Try thigh-high compression stockings! They cover the legs but not the abdomen! I love them.
What I would love to know is why no one ever seems to recommend IV fluids yet every man and his dog with POTS is on fluids.
NJSMKMMS"every man and his dog" ❤️ and cats. me and my two cats x
Because over the long run its just not do-able...veins blow out and other possible infections could happen..etc, etc, etc....it's fantastic for a one pop off but everyday it's just not a possibility....there is a vid on TH-cam where a doctor talked about it . .I can't remember who or what but it's there
I’m just
Its just not something one should get involved with if they can help it. Long term iv fluids should be reserved for a rare situation, last resort after all other options have failed, one can't get in hydration orally. There are a lot of dangers, some potentially life threatening that many don't know about. Many are on it now out of frustration, not having a knowledgeable autonomic specialist to consult so they have their regular physician order them. I think we're going to see a big incline in long term complications over the next decade, my personal opinion.
@@disneyknitter9189
What about gastric Bloating & wearing compression garments around the midsection? I have an SIJ belt which if I'm wearing it when eating after eating it's soo uncomfortable. & Non stretch jeans or pants? Omgoodness! My belly balloons! & Also hands & feet.
Thoughts anyone?
I agree. I have the same issues. I do have a stomach binder, it helps for certain things yet makes others worse. It’s a toss up, for me. 💙
@@lama6911 what is a stomach binder??
@@shannon0057 it’s a Velcro piece of fabric or fabric with netting, that wraps around you from right under rib cage to top of hips. Helps keep blood in mid section of body.
@@lama6911 thank you! I will look into it 💕.
I live in yoga pants.
When i threw meds away and went with natural food and clean water lots of walking for exercise i got better
Me too. We got to fight back these genetic diseases. None GMO ,organic ,no preservatives ,no package and can foods, yes to himalaya pink salt, lots of water no high fructose corn syrup or processed white sugar, no processed meat n the list goes on.
Wishing you well Mary ❤
What you explain is exactly how I feel but being a male for doctors is like depression but to tell the truth they do not listen no attetention at all is only women who suffer or males too?
Both sexes can be affected by dysautonomia. The proportions vary for individual syndromes.
Is any treatment coming soon for pots or dysautonomia
There's a wide array of medications available to treat POTS. Since each patient is different, it usually takes time and trying a few different ones before the best option is found for the unique individual patient. Some options include Pyridostigmine, Ivabradine, Guanfacine, Clonidine, Propranolol, or Atenolol. There are others as well. Definitely find a knowledgeable doctor who is willing to work with you in treating your medical issues.
Somebody tell Dr. Greger that 1/4 of people need to increase salt intake, not eliminate it. About 18:20. (He's a plant-based doctor who is adamant about elimitating salt from everyone's diets.)
Greger is espousing a diet based on belief not on fact. And he is a doctor by degree earned not profession practiced.
Mabe it's the process salt that is full of chemicals he is talking about. Very bad salt is in process package , can, and frozen foods that are killing millions. There are good salts.
Think alot to do with food
Fantastic talk. The only other talks on TH-cam that are as good as this are the other talks on the same subject by the same speaker. Everything else is a waste of your time.
Omg this is me but they just tell me it's anxiety. 2 years if this. No answers.
They told my 22 yr old that and the episodes were happening more frequent. I told him his symptoms weren’t anxiety. He listened and found a Dr that did tests and saw a rare birth defect. He had an extra nerve signaling the heart to go off irrationally and triggering erratic reactions causing him sweating heart pounding and he of course would get scared. Called me at 11:30 at night asking could he come over bc he didn’t want to b alone. Keep looking for a Dr. that will take action
They do just brushed mine off as fybromyalgia.its the subconscious mind related to hypomobile joints as j Eccles as found
THIAMINE, YOU'RE WELCOME
I live a life of hell? My daily bp is 165 plus and I get AD boosting???! But I can not say I got AD as im not a Doctor but its hell past 200 its like I'm O-D'ing in A&E they think Im having?? A strock ?? ..@ 4:44 of this vido..I have all?? that and some more headaches run around the eye and to top of jaw...after years of heart tablets. I asked to be put on Doxazosin as my gp's have not got a clue best they can do is BMI ...I worked out my Bowel is the AD!! Trigger thaking Doxazosin is playing with fire! At 1mg im ok! At 2 its ruff anxiety and some at 4 it slows my bpm to sub 50 all? Day is 60s as is must of the time.. AD to me is a tool that takes for parts that can not .. Ps In 09 I did something to my L5 s1 but saying to gp's about it is peeing up the wall...