No video

Satish Raj - Understanding Autonomic Dysfunction and EDS

Satish Raj - Understanding Autonomic Dysfunction and EDS, from the 2018 EDS Global Learning Conference Baltimore. The slides are available in a PDF from bit.ly/2018ConB... (see also Peter C. Rowe - “Managing Life with Autonomic Symptoms” • Peter C. Rowe - Managi... ).

Пікірлер: 27

  • @andethidialbubabibub3261
    @andethidialbubabibub32613 жыл бұрын

    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..

  • @larrainehester5902

    @larrainehester5902

    3 жыл бұрын

    People do not understand until they walk through your shoes, I am praying for you 🙏🏻❤️ I don’t know exactly what you are going through but I am praying and I care

  • @keannasmigliani

    @keannasmigliani

    3 жыл бұрын

    I'm here. you aren't alone. I'm 22 and watching this because i am searching for a diagnosis. regardless - you aren't alone.

  • @leanneschnerch9143
    @leanneschnerch91435 жыл бұрын

    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.

  • @Rinikatt1003

    @Rinikatt1003

    4 жыл бұрын

    Agreed. Im having an awful POTS day so this was reassuring.

  • @tamiwilcox8105

    @tamiwilcox8105

    3 жыл бұрын

    It explains so much for me, Eds pots and MCAS have answered every problem I have had in life. Now I know why. Next is what to do to prevent any more of the Multiple hospital ER and drs visits.

  • @lilacscentedfushias1852

    @lilacscentedfushias1852

    2 жыл бұрын

    @@tamiwilcox8105 I find it amazing when I see random symptoms I have that are mentioned on good medical information. 🌸🌸🌸 Trying to explain it, EDS, POTS, MCAD etc is so hard though. Not easy getting gps to understand either & not be told it’s incredibly rare😤 nope, they’re rarely diagnosed because gps don’t have a clue or can’t be bothered. Every medical problem I have I’ve had to research it and diagnose it myself. I expect most of us were told everything was fibromyalgia 😤 🌸🌸🌸

  • @lilacscentedfushias1852
    @lilacscentedfushias18522 жыл бұрын

    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 🌸🌸🌸

  • @JohnBedson
    @JohnBedson3 жыл бұрын

    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.

  • @colin9732

    @colin9732

    Жыл бұрын

    😊

  • @colin9732

    @colin9732

    Жыл бұрын

    😊😊

  • @colin9732

    @colin9732

    Жыл бұрын

    😊😊😊 15:29

  • @colin9732

    @colin9732

    Жыл бұрын

    😊 16:51 16:51 16:58

  • @joed6749

    @joed6749

    Жыл бұрын

    Is this in the research somewhere? I'm new to POTS.

  • @ParaTara
    @ParaTara3 жыл бұрын

    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.

  • @lilacscentedfushias1852
    @lilacscentedfushias18522 жыл бұрын

    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

  • @alaskanmoss
    @alaskanmoss Жыл бұрын

    Thank you for sharing this. This presentation is excellent!

  • @NorseButterfly
    @NorseButterfly5 жыл бұрын

    Thank you for making this easier to understand.

  • @kimleon-guerrero9980
    @kimleon-guerrero99805 жыл бұрын

    Great explanation of Pots, thanks for the video.

  • @andethidialbubabibub3261
    @andethidialbubabibub32613 жыл бұрын

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

  • @jennamontgomery3195
    @jennamontgomery31955 жыл бұрын

    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
    @NJSMKMMS5 жыл бұрын

    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

  • @NJSMKMMS

    @NJSMKMMS

    5 жыл бұрын

    particularly around the Fossa Ovalis, he said when children are in utero the Fossa Ovalis is open but when they are born it must close over in order for the child to breath oxygen. When it fails to close over either partially or fully the baby goes blue through lack of oxygen. The Dr said this is

  • @NJSMKMMS

    @NJSMKMMS

    5 жыл бұрын

    what my sons heart reminded him of but he had no hole just extreme hypermobility. So I assume that if this is the case the heart isn't pumping as effectively as it might. My son being much younger than the average and male isn't the average POTS patient but having hypermobile blood vessels as a

  • @NJSMKMMS

    @NJSMKMMS

    5 жыл бұрын

    whole not just his heart I think must be something to do with my sons POTS. As he has grown older aspects of his POTS have improved, so I assume that as women get more hypermobile with age males muscle up and the heart and perhaps blood vessels develop better tone too.

  • @aremedyproject9569
    @aremedyproject95695 жыл бұрын

    Great vid thank you.