So this is the first time for me on this forum - DINET. I’ve heard of it in the past and I’ve looked at it before, but was never a member so I’m happy to be here.
I’m a 24 year old male and I’ve had a Diagnosis of POTS since 2012 when I was 14.
I also have many other co-morbidities going on like Hypermobile Ehlers Danlos Syndrome, Narcolepsy, Fibromyalgia, GERD, ADHD, Major Depression/Anxiety, and probable MCAS…
I’m currently on about 12 different medications and a men’s multivitamin on a daily basis - The medications help me function better than no meds and even though there’s side effects from some, the benefits usually always outweigh those side effects which is okay I guess.
I guess I’m here today to talk about where I stand with my life with POTS after being diagnosed for a full decade now. It’s been an absolute wild journey and to be honest, I’m sort of surprised that I’m alive and talking here today. I really struggle with mental health issue like depression and anxiety due to POTS and everything else, or maybe it’s just how I’m wired since I was born.
Regardless of where everything stems from for me, all I know is that I still struggle severely… I have a full time job as a certified pharmacy technician in a retail setting so I am on my feet all day long which really isn’t good for me probably. But I guess it’s also good that I am constantly insanely busy all day long because if I wasn’t, then my excessive daytime sleepiness/Narcolepsy - I would probably fall asleep at work.
My job requires extreme amounts of focus and attentiveness like many jobs, but it’s just very critical for me as working in healthcare is very vital since an error can cost someone their life potentially.
I apologize that I am all over the place as it’s my first time posting on the forums here, but at the moment I don’t currently have a “POTS Doctor” or cardiologist, etc… So do you guys think that should be a priority for me?
At the moment I get my POTS medications such as Florinef & Metoprolol from my primary care physician, but I had an appointment recently and he gave me the name of a local electrophysiologist to be referred to by him so that they can maybe better manage what’s going on.
Should I see them and get their opinion maybe?
I haven’t had a “POTS” like work up since mid-2020 when I did a Tilt Table Test(which I fainted during) and blood work for low iron levels and some other things from a physician out of Johns Hopkins Hospital in Baltimore(Im located in NJ so it was Telemedicine). My symptoms are managed much better than without the Florinef and Metoprolol, but I guess my PCP can’t prescribe these things for me forever, I’m not sure completely…
From my experience it is very hard to find an adult provider that is fully aware of POTS/Dysautonomia and it’s associated conditions and that has a good knowledge about it honestly. Once I turned 22 I was discharged from my pediatric providers and had to find adult providers, but I stopped doing the telemedicine appointments at Johns Hopkins because I didn’t really like the doctor too much. They are supposed to be very good though at this clinic there so maybe I should try a different doctor out of the same group?
If anyone knows of a good physician in New Jersey where I’m located or the surrounding States, please reach out to me if you can! I would greatly appreciate it as other than my PCP, a really good POTS doctor would help me with a “base” immensely.
Thank you for letting me share and reading!!
- Matt
