THANK YOU so much for this video. It taught me more in 3 minutes than I’ve learned through tons of articles, videos, and even speaking with doctors at the hospital. I’m finally starting to understand now, the mechanisms of it all. I’ve struggled with pre-syncope episodes for a little over a year now - my PCP/neurologist thinks I might be experiencing seizures, or narcolepsy. I have a sleep study coming up after Thanksgiving. I wish y’all were in Virginia. I’ve been too sick to travel, or else I’d be down there in a flash. Do y’all have associates in Virginia? Like Northern VA/DC/Maryland area? I appreciate you 🙏
I have severe episodes of light-headedness and brain fog on standing, but my heart rate and blood pressure are mostly unchanged. Sometimes I get tachycardia but not always. I'm diagnosed with pots and MCAS. What type is this?
I have a question no one has ever answered me: if you were diagnosed with dysautonomia with pots but your blood pressure is fine, heart sometimes is fine other goes up to 160, blood sugar is fine and you get an attack were you feel like passing out, trembling, dizzy, etc. And you get this at least 2 times a day at the same hours. What is it?
First of all you definitely need to define your terminology much more specifically. In other words, what does "fine" even mean to anyone?? Well nothing really. And same with something else you said that I cannot even see right now. In fact I can barely see anything right now. How fun is that one. Having some intermittent blurry POTSY type visual disturbance right now and hard to even look stuff up now let alone type in this big box that keeps hopping around. But you have got to come up with some much more clear data, do some more research, notate what your data comes out to when you perform your NASA lean test, read/watch David Goldstein's 26 part series on dysautonomia which i still haven't even finished and I've had syncopal episodes beginning in middle school so around 60+ years ago so a LOT. Also try watching Videos put out by Lucinda Bateman @ Bateman-Horne center. They focus on MECFS/LONG COVID but being dysautonomias are always part and parcel with them, that's a heck.of a lot if what they talk about. But good at least you included your heart rate at least and thst's pretty high btw. Just make sure you know more than your doctors because as a general rule unless you travel halfway around the country for somebody super special you're really not gonna find much information out there. Also check out Lauren stiles on Dysautonomia International and you could find a specialist on that website and a group as well. Maybe POTS Patients Pretending They're Doctors is Still Around. But actually they will pretty much just kick you right off of that one if you don't know enough so.make sure you feel.pretty proficient before you try that one Sounds like this is all new and overwhelming to you? You're welcome to friend me on FB since I like having friends with similar problems. I'm the one who was raised by Monkeys.
I'd say it sounds like POTS without any OI nor air hunger but with other concomitant symptoms that has never progressed to any true syncope so basically lucky but unlucky??
You would like need an Apple watch of some type to even know when your BP is dropping since obviously if you're feeling pre-syncopal like that it Simply has to be. It is widely divergent however just how much differently different people feel with their different bps. Mine must just really plummet to nothing when I pass out because once when already hospitalized they were abkut ready to code me when I was actually sitting up and felt fine and they called in a team.of blp nurses with their sphygmos and they were all reading palp for my diastolic but then they finally heard something but only called it a 65 over 26.
Note if it's during or right after a meal, if you eat a meal at the same time and it happens. There's a thing called postprandial hypotension, maybe look into that.
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THANK YOU so much for this video. It taught me more in 3 minutes than I’ve learned through tons of articles, videos, and even speaking with doctors at the hospital. I’m finally starting to understand now, the mechanisms of it all. I’ve struggled with pre-syncope episodes for a little over a year now - my PCP/neurologist thinks I might be experiencing seizures, or narcolepsy. I have a sleep study coming up after Thanksgiving.
I wish y’all were in Virginia. I’ve been too sick to travel, or else I’d be down there in a flash. Do y’all have associates in Virginia? Like Northern VA/DC/Maryland area? I appreciate you 🙏
Are you able to recommend a functional neurologist in the Poughkeepsie NY area? I don’t drive & you are too far from me
Do you have a video on Ménière’s disease?
I have severe episodes of light-headedness and brain fog on standing, but my heart rate and blood pressure are mostly unchanged. Sometimes I get tachycardia but not always. I'm diagnosed with pots and MCAS. What type is this?
I have a question no one has ever answered me: if you were diagnosed with dysautonomia with pots but your blood pressure is fine, heart sometimes is fine other goes up to 160, blood sugar is fine and you get an attack were you feel like passing out, trembling, dizzy, etc. And you get this at least 2 times a day at the same hours. What is it?
First of all you definitely need to define your terminology much more specifically. In other words, what does "fine" even mean to anyone??
Well nothing really.
And same with something else you said that I cannot even see right now. In fact I can barely see anything right now. How fun is that one. Having some intermittent blurry POTSY type visual disturbance right now and hard to even look stuff up now let alone type in this big box that keeps hopping around. But you have got to come up with some much more clear data, do some more research, notate what your data comes out to when you perform your NASA lean test, read/watch David Goldstein's 26 part series on dysautonomia which i still haven't even finished and I've had syncopal episodes beginning in middle school so around 60+ years ago so a LOT.
Also try watching Videos put out by Lucinda Bateman @ Bateman-Horne center. They focus on MECFS/LONG COVID but being dysautonomias are always part and parcel with them, that's a heck.of a lot if what they talk about. But good at least you included your heart rate at least and thst's pretty high btw. Just make sure you know more than your doctors because as a general rule unless you travel halfway around the country for somebody super special you're really not gonna find much information out there. Also check out Lauren stiles on Dysautonomia International and you could find a specialist on that website and a group as well. Maybe POTS Patients Pretending They're Doctors is Still Around. But actually they will pretty much just kick you right off of that one if you don't know enough so.make sure you feel.pretty proficient before you try that one
Sounds like this is all new and overwhelming to you? You're welcome to friend me on FB since I like having friends with similar problems. I'm the one who was raised by Monkeys.
I'd say it sounds like POTS without any OI nor air hunger but with other concomitant symptoms that has never progressed to any true syncope so basically lucky but unlucky??
You would like need an Apple watch of some type to even know when your BP is dropping since obviously if you're feeling pre-syncopal like that it
Simply has to be. It is widely divergent however just how much differently different people feel with their different bps. Mine must just really plummet to nothing when I pass out because once when already hospitalized they were abkut ready to code me when I was actually sitting up and felt fine and they called in a team.of blp nurses with their sphygmos and they were all reading palp for my diastolic but then they finally heard something but only called it a 65 over 26.
Note if it's during or right after a meal, if you eat a meal at the same time and it happens. There's a thing called postprandial hypotension, maybe look into that.