Thanks for validating my experience with beta blockers. When I first tried them and talked about my asthma getting worse and them making my inhaler useless I was once again gaslit and told that' wasn't really happening. I looked it up and yeah it's a well known issue with BB in some patients. In fact the particular BB I was on has been known to cause breathing issues and new onset of asthma. But I am just a hysterical woman, what the hell do I know? Also BB dd not help my otrtho tachycardia.
So BB that inhibit my ability to breathe are perfectly fine. but mestinon? nah. That's just for" real illnesses". I have also been offered SNRIs more than once which are contradicted for folks with high HR and BP. (and POTS in general). AlsoI am not depressed.
I recently had a doctor try to rx me an SNRI after he dodged the question about what type of medication it is. I asked him if it was an ant depressant and he said "it is approved for fibromyagia only".It was an SNRI that was approved for fibro. When I looked up the medication and then messaged him about the known issues with these meds and my conditions he said I was being "too sensitive".
Failure to treat is not because they are afraid of causing harm. They just don't care at best. They do not believe in our illnesses.
Side note: POTS patients do not only have symptoms when upright. At my worst I am tachycardic lying down as well . I seem to have found the right combo of supplements to bring my resting hr to the 70's -80's currently(when laying down). I also want to note that tachycardia in general is not the only symptom of POTS. We have all the fun symptoms of dysautonomia too all the time it's just worse when upright.
My average hr after a quick less than 10 minute shower is 180-200+ bpm
For me upright means sitting up or standing up. Even on days where my energy is better I am forced to be bedbound because of the orthostatic issues.
Orthostatic issues can trigger PEM and it's an endless cycle.
My cyanosis is active within seconds of my feet touching the ground.
A care facility is not an option for many reasons. Care facilities do not know how to treat POTS/ME patients for starters. Also I can't even get insurance to pay for a visiting nurse, no way in hell they'd go for long term care and I have excellent insurance(if you can call any insurance excellent).
There are no in patient hospitals that specialize in ME patients. Metrodora is the closet thing but they are too far for me to travel to.
Johns Hopkins is in my backyard and I can't get care because the doctors do not exist. I recently was able to ask Dr. Peter Rowe who is an ME and POTS specialist and researcher but only works with children/adolescents if there are any options for patients like me. He said there were no options.
I am still on the waitlist for the waitlist at the POTS center. 2027 at best is when I would be able to be seen.
In the meantime I am rotting away in my bed in unimaginable pain and no one cares. Oh yeah and I am getting more and more episodes of gastroparesis. No one gives a shit about that either.
RE: Returning soon, donations also will continue shortly