bombsh3ll Posted April 24, 2019 Report Share Posted April 24, 2019 I don't know which country this is in yet, but it was on the news this morning that a woman who has been in a coma since 1991 has just regained consciousness. Assuming she has no motor/intellectual disability, it should soon be evident whether being immobile on your back for 27 years causes POTS. I will be following her story. I wonder if Dr Levine will too. B xxx Quote Link to comment Share on other sites More sharing options...
Alex D. Posted April 24, 2019 Report Share Posted April 24, 2019 One person does not make or break a case. Quote Link to comment Share on other sites More sharing options...
Guest KiminOrlando Posted April 24, 2019 Report Share Posted April 24, 2019 Very interesting. NASA does a lot of work on this subject too. They refer to POTS as Astronaut's Disease. Quote Link to comment Share on other sites More sharing options...
p8d Posted April 24, 2019 Report Share Posted April 24, 2019 I saw this and thought they said the person had been having PT but that’s only for muscles. I would think that the person would have dys, definitely. Quote Link to comment Share on other sites More sharing options...
Pistol Posted April 24, 2019 Report Share Posted April 24, 2019 @bombsh3ll - this was in the UAE - United Arab Emirates. And I assume that she will have major dysautonomic issues once being able to be upright again, yet I hope this will be temporary. Quote Link to comment Share on other sites More sharing options...
JimL Posted April 25, 2019 Report Share Posted April 25, 2019 11 hours ago, bombsh3ll said: I don't know which country this is in yet, but it was on the news this morning that a woman who has been in a coma since 1991 has just regained consciousness. Assuming she has no motor/intellectual disability, it should soon be evident whether being immobile on your back for 27 years causes POTS. I will be following her story. I wonder if Dr Levine will too. B xxx Which Dr Levine? Quote Link to comment Share on other sites More sharing options...
bombsh3ll Posted April 25, 2019 Author Report Share Posted April 25, 2019 10 hours ago, JimL said: Which Dr Levine? Dr Benjamin Levine who coined the "grinch syndrome" theory. The thing with astronauts is they do have a POTS like presentation when they first return from space, but they spontaneously recover, they are not stuck with it like people who get it on earth and were not gravitationally deconditioned, at least not to begin with. If someone can recover orthostatically after 27 years of bedrest, this would imply deconditioning is not a cause of permanent orthostatic disability. B xxx Quote Link to comment Share on other sites More sharing options...
JimL Posted April 25, 2019 Report Share Posted April 25, 2019 3 minutes ago, bombsh3ll said: Dr Benjamin Levine who coined the "grinch syndrome" theory. The thing with astronauts is they do have a POTS like presentation when they first return from space, but they spontaneously recover, they are not stuck with it like people who get it on earth and were not gravitationally deconditioned, at least not to begin with. If someone can recover orthostatically after 27 years of bedrest, this would imply deconditioning is not a cause of permanent orthostatic disability. B xxx There are over a dozen causes for POTS, deconditioning is just one and low hanging fruit at that. I have an appointment next month with Todd Levine, who is a neurologist that specializes in POTS, that's why asked. Quote Link to comment Share on other sites More sharing options...
bombsh3ll Posted April 25, 2019 Author Report Share Posted April 25, 2019 15 minutes ago, JimL said: Todd Levine, who is a neurologist that specializes in POTS I didn't know there was another Dr Levine interested in POTS! I would really like to hear how you get on with him and what he has to offer. Sorry I am laughing at the image of low hanging fruit - it is the only kind I'd be able to pick, or even the rotten ones that had already fallen. I would love one day to be able to get to the good stuff at the top of the tree again 😊 B xxx Quote Link to comment Share on other sites More sharing options...
firewatcher Posted April 25, 2019 Report Share Posted April 25, 2019 I hesitate a bit before wading into this, but here goes. I have seen and been treated by Dr. Benjamin Levine as well as completing his exercise protocol. As far as doctors go, he has been one of the most compassionate and supportive doctors that I have ever seen. He expressed his regrets over his "Grinch Syndrome" comments and was incredibly kind and informative when I saw him. He understands how hard his exercise protocol is and is VERY encouraging about using it as a coping mechanism for POTS. I am one of his successes. I am not cured, but I am more functional and fit than many of my "normal" friends. It is HARD to do and hard to maintain, but I will continue to try. I hope this coma patient recovers and makes up for lost time. Honestly, I hope we ALL do. Quote Link to comment Share on other sites More sharing options...
Pistol Posted April 25, 2019 Report Share Posted April 25, 2019 9 hours ago, bombsh3ll said: The thing with astronauts is they do have a POTS like presentation when they first return from space, but they spontaneously recover, they are not stuck with it like people who get it on earth and were not gravitationally deconditioned, at least not to begin with. As far as I know that is because they have been in a zero-gravity environment for an extended period of time - when they acclimate to the earth's gravity they return to normal. Their problem is the OUTSIDE gravitational force - in dysautonomia the problem is within the body not being able to resist the gravity on earth ( blood pooling ). Normally our bodies can compensate for this ( we have adjusted o the continuous change in gravity when standing up ) but in dysautonomia this compensatory mechanism no longer works. That is the difference between astronauts and even long-term bedridden people: once they return to compensating to the upright position their bodies adjust. In true dysautonomics there will be an abnormal reaction to the upright posture WITHOUT being supine for too long or WITHOUT being in a zero-gravity environment. However - for a dysautonomic being immobile for too long will TRIGGER the abnormal response. Quote Link to comment Share on other sites More sharing options...
Guest KiminOrlando Posted April 25, 2019 Report Share Posted April 25, 2019 Yes. NASA is paying people to be bedridden so they can study this. The Russians also had a big problem with this when they had extended space travel. I'm not sure I remember correctly, but I thought the cosmonaut died after returning to earth. It wasn't just a simple readjustment to gravity. Quote Link to comment Share on other sites More sharing options...
bombsh3ll Posted April 26, 2019 Author Report Share Posted April 26, 2019 9 hours ago, KiminOrlando said: Yes. NASA is paying people to be bedridden so they can study this. The Russians also had a big problem with this when they had extended space travel. I'm not sure I remember correctly, but I thought the cosmonaut died after returning to earth. It wasn't just a simple readjustment to gravity. I always said no amount of money would persuade me to go into space, but now I think I might be better suited to life on a space station where there everyone floats around with no gravity. I wouldn't be able to come back though, and the amount a POTS person pees might be an issue in a spacesuit B xxx Quote Link to comment Share on other sites More sharing options...
yogini Posted April 26, 2019 Report Share Posted April 26, 2019 On 4/24/2019 at 10:44 AM, bombsh3ll said: I don't know which country this is in yet, but it was on the news this morning that a woman who has been in a coma since 1991 has just regained consciousness. Assuming she has no motor/intellectual disability, it should soon be evident whether being immobile on your back for 27 years causes POTS. I will be following her story. I wonder if Dr Levine will too. B xxx I don't think there is a 100% link between being bedridden and orthostatic intolerance. And I also think that those who get temporary orthostatic intolerance after being bedridden are in a different category than most of us here. Quote Link to comment Share on other sites More sharing options...
bombsh3ll Posted April 27, 2019 Author Report Share Posted April 27, 2019 On 4/26/2019 at 3:30 PM, yogini said: I also think that those who get temporary orthostatic intolerance after being bedridden are in a different category than most of us here. That's what I think too - it goes away pretty quickly for a healthy person after bedrest, whereas it persists in us when for the most part we were fit and active at onset. B xxx Quote Link to comment Share on other sites More sharing options...
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