Satish Raj - Understanding Autonomic Dysfunction and EDS

[leanneschnerch]

To hear Drs talk about my disorder is reassuring. The explanation of symptoms and patient histories mirror my own experiences and makes me feel less alone.

[andethidialbubabibub]

Great presentation! Ty for the upload.
People can't believe how your life changes when you get sick with 20 and have unbelievable pain, not for a week, but yrs..

[JohnBedson]

I don't know why, but whenever doctors give talks on POTS they mention the increase in heart rate on standing, but overlook the fact that the heart rate in POTS patients is much more variable at ALL times, even when they are not standing, than control patients. It's so variable that it is often difficult to decide what their supine heart rate is before they stand. After they stand their heart rate is all over the place. Yes it is raised, but it is also flying up and down at a high velocity. Their blood pressure acts the same way. This can be seen in the chart at 8:52. I think these people must be getting adrenaline surges 24 hours of the day, but worse when they stand.

[lilacscentedfushias]

Even in my mid 40s I will still sit crossed legs, then bend double at my waist. It seems all along my body told me to do that, not stand uptight. Sometimes I’ll lean on my elbows like that or I’ll use my feet like a mini lectern for my chin. Thinking about it, I much preferred teaching children from the floor, in a big circle. Makes me think my body knew it didn’t like me sitting on a chair. Even now my legs get so painful if I’m sat on say a chair or bed with my legs hanging down. I tend to always sit with my legs up when I can, crossed, outstretched, raised on pillows…we all know how it goes 🌸🌸🌸

[ParaTara]

I was diagnosed with inappropriate sinus tachycardia after having testing done (not including a tilt table test) and nothing being found besides the episodes of sinus tach. I planned to have a tilt table test but I sustained a SCI before I could do that, and at that point I had bigger problems. I wouldn’t say I had a postural trigger, but definitely exercise intolerance. Strange how the episodes of the tachycardia actually decreased over time but I’m also on a beta blocker since my heart rate was usually around 100 without anything. I’m still not sure if I believe it was an accurate diagnosis but it was better than doctors telling me it was stress and nothing was wrong.

[NorseButterfly]

Thank you for making this easier to understand.

[alaskanmoss]

Thank you for sharing this. This presentation is excellent!

[kimleon-guerrero]

Great explanation of Pots, thanks for the video.

[lilacscentedfushias]

Wow! I didn’t know blackouts/syncope aren’t as common as I thought. After researching the topic from good sources, such as this video. Not ransom snake oil sellers trying to sell the next health kick ska expensive rubbish that doesn’t work. I blacked out twice in a week, on the Monday I fell downstairs, on a positive note, my shoulder and elbow hadn’t been right for months. Even the chiropractor couldn’t fix it, I somehow managed to fix it. The Friday I fell crossing a road with my children, thankfully a quiet road, particularly at 6.20am. I smashed one side of my face on the kerbstone. It left a large and in parts, deep graze, I broke my glasses, thankfully had my spares too. It swelled a lot and hurt my wrists very badly and dislocated a thumb. The a&e dr was shocked, amazed I’d not broken facial bones, thumbs, fingers or wrists.
They wouldn’t let me walk to x ray I had to be pushed because my numbers were so high. That dr finally triggered getting tested for it, neurology to rule out seizures etc. tilt table test…then covid hit! I’m still waiting to see a dr, I keep trying to get someone to answer a phone or ring me back after me leaving messages.
Oh, about 5 or 6 years ago I asked my gp if it was pots, he said no 😤 I really do like him, if not I’d have reported him for missing it and not doing proper gp surgery tests/checks. He checked my oxygen levels, pulse & bp. Once…we know that isn’t helpful. Years ago I had a 24 hour bp monitor, they then add up all the numbers, the highs and lows mostly, with some ok ones. Then, decide it to give an average. Completely pointless! It’s not rocket science to understand that wouldn’t work

[jennamontgomery]

Just wanted to point out that Yes it was an online survey so more access, but your are still asking for patients who had an MD diagnosis of POTS, so the concern you mentioned about access to healthcare still very much applies. If you have limited access to healthcare, you are less likely to have an MD diagnosis of POTS. So I do think your numbers on population effects are likely skewed by who took the survey.

[NJSMKMMS]

I have a son that was diagnosed with POTS as a 7 year old. He was later diagnosed with EDS but by far his POTS was most problematic. When he was taken to a Paediatric Cardiologist to be checked out for heart issues related to EDS the cardiologist pointed out how floppy his heart was as it pumped

[andethidialbubabibub]

The " wooo" at the mentioning of weed xD
At least science is on our side.. Cannabis saved my life