Peter C. Rowe - Managing Life with Autonomic Symptoms

[concertmasterntl]

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!

[wytchdr]

I wish I could find a doctor that would just listen to me. You explained a lot.

[julieporter]

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 .

[hannaa]

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!

[kimleon-guerrero]

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. 💞💫

[lilacscentedfushias]

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

[AnneloesF]

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!

[gamewrit]

14:30 Discussion of treatment options.
33:30 OI is not just deconditioning.
34:20 Addressing contributing conditions.

[littleentn]

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?!

[shannon]

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

[jennamontgomery]

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.

[squidiva]

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.

[janeb]

I collapsed last week for the third time in recent years. Was with a vet who monitored me at the time. She told me i went as white as sheet and had a very weak pulse. I was hot, sweaty nauseous, my hands had prickly feeling and i had an optical kaleidoscope in a crescent shape in the right side of my vision. I normally have hypertension that can be labile. This talk explained so much. Thank you.

[dustyfeller]

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.

[gamewrit]

17:45 "Avoid really warm environments." I'm watching this in bed at 1:53 a.m. with an ice pack on my chest.

[ryanrhodes]

This explains alot! I wish my doctor new this!
I get all of these symptoms
Im sharing this

[bridget]

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!

[lynnann]

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?.

[breevick]

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.

[patriciamcdonnell]

excellent presentation with many good recommendations. Thank you!