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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
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Hey all, someone just reminded me of this post.
Its Dec 2024. I'm still on losartan twice a day. I had a dr, not my pcp tell me "if you didn't take your blood pressure, you woukdnt need to be concerned."
NO. YOU woukdnt have fo be concerned. You have no skin in this game. Just one more death. Not my fault. I have more pts to shame? "Stop taking your BP and you will be fine."
So I stopped leaving the house, and stopped walking, gave up and with no movement my SOB "went away."
Bigger issue is (who knows why right?) I fell off my stool in wheels in the kitchen as I couldn't stand up and cook etc. I hurt my hip but I have had 4 back surgeries from an on the job in nursing when I was 23. That's how I got CRPS postop when I was 24.
Its now December, I'm still in horrible hip pain and I can't tell you how many ortho guys etc wouldn't order an MRI of my hip. I'm really really good at pushing to get good care until I get blown off by another dr and I give up for a while.
My RNP who I call my PCP, shes my "dr" and did so many failed referrals. A hip dr just plain refused the referral. He saw my horrible back xrays, decided it wasn't my hio and wouldn't even see me.
Turns out I had a gluteal tear and I tore my hip labrum in two places! I said it was my hip people! I've gotten two "diagnostic" hip injections "to make sure my pain is coming from the traumatic labrum tear.
Its been so long, arthritis formed, and really at 69, they just do a hip replacement. I've been on my own for months trying to find a hip dr who understands CRPS and what needs to be done in surgery to help prevent a spread. Its hard to fjnd people who have even heard of crps. And again, no skin in the game. If I have a full body spread, I end up jn a nursing home at 70. I woyldnt bs seeing hip surgeon anymore so what does he care.
Anyway, 5 days ago I got an appt at Mayo in Jacksonville in Feb. Its 600 miles a way so hiw to get there but if I drive, ill get there. No direct flights and the flights all have 5 hour layovers. I have to go there for my 30 minute appt but ok. By Feb it will be almost a year since I fell. He rught now is scheduling surgery 3 to 5 months out. By February, it could be late summer next year before surgery.
Thus has been hard to live thru and is really a complication of long covid since I need stools or desk chairs all over the house. I'm still on oxygen (and CPAP now) at night but I've stopped checking my 02 and BP. If I don't kniw they are bad then I dknt have to be concerned. Its gibberish but my hip is so painful for 10 months, it take up all the oxygen in my body so to speak. I need a knee replacement on that same leg but I'm walking so stiff legged on crutches, it doesn't hurt so yeah. Silver lining. At least there is movement and I ha e an appt with a great Mayo dr who will hopefully nit tell me I have to have my hip replaced outpt? Ive spoken to them at Brooks rehab and with my medicare/medigap is can be there for a couple of weeks. Ill be 70.5 and all alone 600 miles from home with a hip replacement. Surely he won't send me to a hotel the night of surgery all alone right? Will he not do ut if I don't have family/friend there? Am I too much of a risk? Nah, Mayo does the hard stuff right?
Believe it or not, the 2 women at the desk at PT (twice a week for over 2 years so they know me) said they wanted to drive me to my appt! Seriously???? "Well drop yoh at Mayo and go to the beach! We can stay a couple of days and get put of the snow in Feb! We are all in!" There ARE some amaxing people in my life too. I'm not a horrible person that drs hate. Peolle that aren't drs actually like me. I'm in therapy with a psychologist who specializes in chronic illnesses and pain. She works as my team with my RNP/PCP. I've never had a team before. Its always been me on my own trying to run the show. I'm veey grateful.
So let me just add for absurd humor that I'm in Asheville. We are well known now because of Hurricane Helene. I am not homeless like many thousands now still living in tents in their once front yard! I have electricity again and got running water a few weeks ago. All this insanity, and on crutches, getting containers of water from a friends neighbors pool to be able to flush. Its been almost laughable at this point right?
I also had to have a trigger finger operated on which is fun when yoy walk on your hands and a hurricane hits a few weeks later.
So, will a Mayo Dr be afraid to help me at thus point because I dont care really if I die during surgery. Its easier than suicide and my life insurance won't be void so my sisters can each 600-800 miles away can do something with my body. Better not say that to the dr. They don't like suicidal people. I'm not in danger its just all that's left. I'm done if Mayo wont help me. Life feels very complete and ill be 70 in 6 weeks which is being hard to imagine and facing my natural mortality. How can I be suicidal-ish and scared of dying?
Its a matter of control. Good news is I've lost 35 in the middle of this mess and hope get into normal range by surgery course they say normal BMI for 5'3" goes all the way down to 104! seriously? Id be admitted for an eating disorder if I went down to almost 100! BMI weights are craziness.
Ok. This was long again and I was writing to tell the good news of no more SOB and I was posting about feeling like I don't have long covid anymore. For kicks I did my pulseox the other morning after being on oxygen all night and it was 89! Are you kidding me? The dr was right. If I don't look, I don't kniw so I don't have to care.
I have really good insurance tho who can't refuse me MRIs, surgery etc. No prequalification, no refusals. Drs love my insurance. They can do what they want to do without insurance hassles.
Has anyine been to Brooks?I hope on really good experiences. If thd Mayo surgeon refuses to ket me go to rehab, like the local dr I've seen, then surgery is off. I just cant put myself in that kind of situation. I have no husband or kids and my sisters are also 70 or late 60s with their own stuff. As a lifetime disabled person who is a senior, all my friends are too. I'm alone period.
Except for can you believe my PT office admin assistants want to drive me to mayo. I said 600 miles before but its really a 6.5 hour drive so like 300 miles?
And I gotta tell you, in Asheville and so many outlying towns and north and east TN, things are like we survived a nuclear attack. Still. 2+ months later. But kids from my church died, the whole family actually. People I know lost everything. Could be way way worse for me personally. We hsve to just stay grateful dont we? I vould easily be houseless now too. Life is bizarre isn't it?
Mayo, can you help me please?
@bebold, wow that is quite the post. I found myself almost breathless as I read all the details. Did you find it helpful to see what you had written a year ago?
In your post, I read many things that are moving in the right direction. Your long Covid symptoms have diminished or even disappeared. The shortness of breath has improved, And you have an appointment at Mayo Clinic. Fantastic.
It's so nice to hear about the kindness of acquaintances stepping up to drive you to Jacksonville for your appointment. It sounds like you have looked into Brooks Rehabilitation Hospital for your recovery post surgery, but you're concerned about the bridge time between day/night of surgery and being admitted to Brooks. Please make sure your Mayo care team knows about your situation and concerns so that proper arrangements can be made.
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3 ReactionsHi..I have been a Mayo patient at Rochester, but they are now refusing appointments in their internal medicine department. After Dr Van left Mayo, I can not get an appointment. They have refused me twice now within this last year. Do you have any suggestions for me? I have long Covid and very elevated hypertension and was told in March I also have orthostatic hypotension , so my blood pressure is high then it drops which causes me to faint. I have a concussionn , TBI, broken nose from the fall in March and the fall in June caused a injury to my right leg and knee. Blood pressure in the 200's , bottom number in the 100's. I really don't want to have a stroke and I already have a brain aneurysm. Any feedback would be appreciated. Thank you.
I'm kind of zonked for today but I ended up with POTS with long covid. Many do. For me it was a very high blood pressure for others it's very low and fainting. Maybe a combo?
Do some research.if you have not had POTS suggested. Sound familiar.
I read online it can be impossible to get an appt at Mayo sometimes so only 2 months is a miracle for me. Day at time right?
Maybe a volunteer here can have a thought that might help? Did he just leave and you can find out where he went? Did he start his own office? See if you can find him perhaps? He may not be at Mayo anymore but he's still the same good doctor.
Are they just not accepting new pts? But you aren't new. Did they just dump all his people when he left. Mayo seems they should be more moral than that? Best of luck. Read about POTS.