RE: 420 SBI giveaway Round 2
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Old military habits, never got over waking up at five in the morning! Too bad you're not feeling any better. POTS is a tough thing to properly treat!
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Indeed. Told the doc beta new beta blocker is not working . I am still in syncope/near syncope just sitting upright for a few minutes. Multiple episodes of this documented at doctor's offices recently and literally no one cares. My brain isn't getting enough oxygen and is causing me to pass out- not to mention it triggers PEM/PESE for days or weeks after an event.
There are other meds I have begged to try (not controlled substances). No go. I need to wait 2+ years to get into the POTS clinic. Not an exaggeration
Where do you live? I might have some recommendations depending on where you are.
I'm in Maryland with John's Hopkins basically in my back yard. I still cannot find someone willing to treat me.They have a POTS center with a 2-3 year waiting list. They are the only real specialists in the state I've found who treat adults with POTS ( and related illnesses) and understand PEM /PESE and how that effects the illness.
Cardiology in general is a no go for POTS. if they even accept POTS patients we are often dismissed and essentially "eye rolled". It's a nightmare of me just being passed off to specialists who refuse to treat. I am literally too sick to continue to seek treatment. Zero accommodations for me at any doctor office-most don't know what POTS is or they think it's psychological (like all illnesses that mainly effect women)This has been my life and the life of people like me for decades.
John Hopkin's has one of the best POTS clinics in the country, unless you can afford to travel to the Mayo Clinic which may have some great options too. I was thinking Cleveland Clinic too, but I'll have to email my friend there and see what she might recommend. She is a headache neurology specialist.
They do but it will be years until I can be seen :(
I have the financial means to travel but travel involves hours of upright time and I can't do that . I would travel if I knew I'd actually get treatment, but so far it's just been specialist ping pong. Vascular specialists want me to see neurology/rheumatology. Neuro wants me to see cardio. Cardio gives zero fucks about POTS at least the ones I have found. and it goes on and on. It's a nightmare.
There is a clinic opening in New York early next year. If I can get in, I will likely go there. Still not sure how I can get there without passing out but that's a problem for another day.
Yes please ask your friend, I also have two types of migraine, so that's not a bad suggestion.
That's why I like the Mayo, you essentially go in and you are inpatient and they address all of your issues while you are there from all specialties. None of the ping pong between specialists. But that would entail travelling to either Minnesota or Scottsdale. And first they have to accept you as a patient, but with your diagnosis that wouldn't be an issue.
There is a new hospital like that in Utah as well. IMO all patients with energy limiting issues and those with orthostatic intolerance should be given this option instead of ping pong.
Every doctor visit costs me 2+ weeks of my life because of the disabling PEM (mine is so severe I can lose my ability to talk and eat at times). Doctors do not understand this nor do they care. It's also hella expensive this specialist ping ping, especially since I get no care for my efforts.
Speaking of which you may know know what that is. There is an excellent short videos series on youtube aimed at educating health care providers about PEM search "Batman Horne PEM" and you'll find it if you are interested. :)
You area kind soul. Just thought I'd mention that.
I'll check that out for sure! Specialist ping pong gets very expensive! Which hospital in Utah does that same type of care?
Metrodora. clinic. https://www.metrodora.co/ They cover so many over looked and co-morbid conditions. If they were closer I'd have already gone there.
I'll check them out. I no longer practice medicine thanks to the COVID vaccine but have a lot of friends around the country who can help people out. I'm hoping I can find something for you. The problem with Cleveland is it would be outpatient and require scans which means more copays... She is is a really kind person but it means staying in Cleveland for a while which in my opinion sucks....
"it means staying in Cleveland for a while which in my opinion sucks"
I literally lol'd at this
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I don't know you used to practice medicine (and am very sorry illness has taken that away from you). Makes sense though you seem to follow what I say much better than most people :) Thanks for you input and trying to help.
I am very glad to hear you are feeling better but am sorry for all of your struggles. ❤️🦄
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He was kind of a big dill.
Credit: reddit
@thebighigg, I sent you an $LOLZ on behalf of cryptounicorn420
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It's life, no guarantees! You use ecency don't you? I'm trying to figure out how to use those ecency boost points? Can you boost your own post ?
You can. They have about a 50% chance of being boosted though. I have a ton of points on my alt account . I can send you some. I find it's more useful to use the points to "promote" (especially giveaway posts) posts rather than "boost", but you can do both, just boost doesn't always go through.
I just tried to boost one of your posts with my alt but someone beat me to it. I'll send you some points after lunch and you can play around. I was gifted a ton of points recently and will gladly pay it forward and give you some.
Pro tip: If you are using points to boost use the minimum amount allowed (150 points I think). This increases your chance of getting the boost approved. Ecency refunds points if they decide not to boost your posts so you don't lose anything.