Heartrate 135, dizzy & SOB when standing

   Imagine if every time you were standing longer than 10 minutes you felt your heart pounding at 135-145 beats per minute, got dizzy and become short of breath (SOB). This is how living with postural orthostatic tachycardia syndrome (POTS) is and I'm so frustrated with this. The meds haven't helped me and I'm fighting to get a new specialist to treat me because the cardiologist I've had since 2021 hasn't helped me and is just not working out. How can a doctor properly treat a patient whom he only sees through video appts? He can't and hasn't. 

   It's been over 6 months since Providence #Facey medical group has denied my referral request to Mayo clinic in AZ & given me 2 others instead that refused to treat me, UCLA & Stanford 😡, they just made an appt. for me with a neurologist THEY chose & upon calling, I was told that the doctor "sees" POTS patients but refers them out to a cardiologist 🙄 and my medical group doesn't have any cardiologists that treat POTS, which is why My cardiologist was from Cedars-Sinai 🤷‍♀️. That is why it took 2 years from my diagnosis in 2019 to get a doctor, because 3 cardiologists refused to treat me, saying they were not specialists. So my HMO wants to just waste more months or years going back & forth giving me referrals to Dr's who refuse to treat me instead of just approving the one place that has a complete dept. dedicated to treating POTS patients. 

   In the meantime I am getting No treatment or help with my symptoms other than what I do to just manage them. Basically,  I have to sit down to let my heartrate go down when I feel dizzy or short of breath, so everything I do, I'm knowing in my mind I have about 10-15 minutes to get it done before I start gasping for air & feeling dizzy. It's harder when I go out somewhere but thats why I use a walker with a seat, simply to have a chair handy when I need it. I don't go out much because it's just such a hassle and knowing what will happen makes me feel like I'm a burden in some ways, because I have to stop & wait several times when I'm out. My husband is great about it but I hate it & feel bad about it, so it's just emotionally frustrating to me because I'm not the same as I was before POTS. I went from a nurse who worked in the ER 2-4 nights a week walking all over the hospital's ER to now having to sit down after 10-15 mins of standing😔 it's maddening. I use to walk for exercise at night, speedwallking & I miss it, now if I walk on one day the next I'm in bed so exhausted its almost not worth doing too much. I did physical therapy & found that I will never get beyond the 15mins before needing to sit & rest. It's depressing & hard to not let it get me down, so it's not only a physical issue but a mental one too. 

   I am also fighting to keep my disability coming in, cause the social security dept. Doesn't understand POTS & so they denied my 1 yr renewal & I'm going to see the judge who initially ruled in my favor to keep it going. This is also a source of frustration to have a agency try to say I can work when I can't even stand for more than 15mins, how would I even pass a job physical for nurses if I felt I had the energy to work🙄🤷‍♀️ Being a nurse, I do know what a normal heartrate is & I definitely don't have one when standing, or even sitting if I'm doing something- like brushing my hair, folding laundry etc. There are some days I have to steady myself by holding a wall due to the dizziness & it comes on at anytime, not just at the 10-15min mark, that's the worst part. I will live with this the best I can cause it's obvious that My HMO could care less.