Diagnosed a while ago with POTS but my BP...
I was diagnosed with POTS about 8 months ago when at my PCPs, I was dizzy and my face went numb. 180/120. A quick dose of clonidine brought it down. She didn't put me on any high blood pressure medication, so as an RN, I bought a cuff and started taking it myself. It stayed under whaterever/100 so I just sat on it till I went thru a dizzy spelled again and it was through the roof.
I was put on losartan about 6 weeks ago once/day. Within 2 weeks I was on twice a day as it wasn't helping. AM and PM but in the middle of the day it would be really high again, so I was put on clonidine twice a day PRN. And that's where I am right now except it's still really high.
After sitting in my chair for hours yesterday basically doing nothing, it was 180/104 when I went to bed.
When I'm taking my evening dose I never know whether to take a PRN at the same time, but I figure it needs to come down fast and if I'm in bed it doesn't matter if my blood pressure a little bit crashes.
I'm really quite concerned but I seem to be the only one. "Take your blood pressure twice a day, write it down, and I'll see you in 6 weeks." and my PCP (who is an RNP, is actually quite well versed in Long Covid but probably frustrated as there's nothing she can do? So I do a lot of my own research.
I just saw a video on YouTube by Dr Mark Hyman about about inflammation and long covid. It's worth watching. If you do a search on his name you'll find that video. It's about an hour long but he mentions a few blood tests that can be done to check for things that aren't being checked for enough. Has to do with small blood clots and inflammation in the veins and arteries. I'm going to check with my PCP when I see her on Wednesday and see if I can get her to order these blood tests and see what's up. Don't we all get tired of everything coming back negative! I get to the doctor in my O2 and my blood pressure fine so I'm glad my blood pressure cuff keeps the reading in memory. I even bought a pulsox that comes with an app so it can be monitored on my phone.
It's also worth saying that I've been on overnight oxygen for a 3 years now and I just had to start using oxygen prn during the day. It's not unusual for my oxygen to be in the 80s. I feel like I'm the only one concerned and I feel like long covid is eventually going to kill me. They say POTS won't kill you but a stroke will. Or if the POTS you have is low blood pressure, if you faint and hit your head, that will kill you too.
I wish people were spending as much money on helping us as they spend "getting back to normal and opening everything back up" pretending covid no longer exists. (there's another new variant they're tracking.)
I had a really mild case in July of 2020. And I've been sick ever since. I feel like even my friends don't think it's possibly that big a deal. Tired of hearing about it. I feel like my fear of death is real and I'm the only one who's afraid.
I'm scared. Is anybody else? I feel like with covid there's three groups. Those who lived, those who died, and those who wish they died? (I am glad to be alive, I'm really afraid to die this way.) I probably should add my mother died of covid in February 2020 before they say it was even here. I know lots of people who say they were very sick in January and February 2020, like "the sickest they'd ever been in your life."
I hear people now who say "I've got the worst cold I've ever had." I ask if they've tested and they say they are negative. My PCP told me anybody who says "worst of anything," it's covid.
I'll add I've had it twice and I've never tested positive. I also have CRPS which is an autoimmune pain disorder and had a huge spread throughout my body as my cytokine level is already naturally elevated.
The only thing I keep telling myself is at least I'm 68 and I'm not 35, confined to bed, needing to be carried to the bathroom. I'm seeing people that were very very healthy now being very very sick on the long covid Facebook group.
I'm probably depressed as I probably always am but… Medicare won't pay for help in the home unless you need somebody to bathe you. Leave me some dignity huh?
And if you can leave the house and drive to the doctors, then you don't qualify for home assistance. I also go to physical therapy twice a week and very very fortunate to have good insurance. For me, sometimes I've been sleeping on the same sheets for 4 or 6 months. Usually a sink full of dishes and a huge pile of dirty clothes. Kitchen and bathroom floors that have not been washed in a couple years. Life is hard. I'm single, my closest family member 1000 miles away. Even they don't think anything could possibly be serious. They had covid and they are fine.
Thanks for listening. I'm feeling very frustrated and very scared right now. And very alone. Keep myself occupied as I actually still run a small graphic design business out of my house. I'm working on some KDP (Amazon) low content books to sell (coloring books, journals, kids maze books, etc.)
If you know computers and looking for something to keep you busy, check YouTube. There's lots of videos about KDP self-publishing. At least it keeps me busy.
My best, Betty