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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BEBOLD, God Bless You. I believe you. There are so many things that happen after Covid. I pray you can find the right doctor and get on the right medication to help you. It's scary for your BP to be like that and have POTS as well. I'm so sorry you are going through this. I think on down the road they will discover a lot of things from Covid that they are not aware of now. I told one doctor that my bloodwork went crazy after Covid, they didn't believe me, BUT IT DID!! It wiped out my B12 & lowered my D3 significantly, elevated my glucose, cortisol & plasma were way off as well. I waited a month and had bloodwork done again and all was normal with the glucose, cortisol & plasma. Praying much for you. Don't give up. We are in the complicated class of patients aren't we?
My advice is to ask to be referred to a cardiologist. They have a lot more tricks up their sleeve and have treated hypertension for a living. Once they establish a medication regime for you, maintenance can be done by pcp. There is such a bewildering variety of bp meds – I am sure your cocktail is somewhere out there too. Speaking from the experience of relatives. Just out of curiosity – you mentioned you had a very mild case of covid – but you are on oxygen? Did they scan your lungs when you were sick? It's worth knowing if there is any damage there as pulmonary rehab can do wonders for overall health too!
I can't imagine being alone and suffering long covid. I have strong family support and some days are unbearable. So sorry, BeBold. I have observed through these comments that if you had a preexisting problem, this wicked virus searches it out and attacks. We are not alone.
Hello Betty I had covid twice now,both cases were pretty severe I did get threw both cases I thought with no lasting effects, I also had 2 vaccinations after 1st bout with covid ,my second bout with covid was August 2022 so 7 months after second bout with covid I developed these awful symptoms ,started with abdominal pain gas bloating blurred vision nervousness blood pressure problems constipation different color stool ,fatigue chest discomfort the list goes on and on ,I had pre existing problems I had stents so that is heart disease, I'm diabetic so I'm now pretty devastated by these long covid symptoms I feal for you, I also feal like I'm dying I've lost 22 lbs recently I can't taste my food I'm sick to my stomach 24/7 I red a article in the Thailand medical news about the diabetic drug metformin and how it helps your gi symptoms, so I changed back to metformin to see if this would help,and to my surprise it did it has relieved some of the pain in my gi system, my blood pressure was going up and down it seemed to get worse when my stomach gas was at its worst, I started taking my old drug metoprolol it is a beta blocker it has helped bring my heart back to normal and calm my nerves. This is hell ,I tried doing things today I was actually up all day by 5 pm I was totally exhausted and my stomach pain was starting to increase so I drank 48 ounces of water and went to sleep, water helps my pain you have to drink alot of it everyday
I want to say you need to get to a cardiologist now ,I know what that high blood pressure feels like,scientist are saying covid is a disease living in pockets of are gut,it is destroying are organs ,go to Google pull up long covid with gi symptoms it is frightening what scientists are saying, another website is thailand medical news good articles about long covid with gi symptoms we can't get truthful news in this country anymore.
So that's interesting. Suddenly last year, my B12 was high. I don't take a b12 supplement. I didn't even know till I saw it on the portal. Seemingly for no reason. I had her check it again and will see what it says wednesday.
See, unless we talk to each other, we have no idea what can be connected. Thanks. be
Too tired and late to respond but have lots to say. I'll say more in the next few days. I did see a cardiologist like 2 years ago and he told me I had POTS "probably" and he could "medicate me but it won't help and will make me feel lousy, did I want him to put me on pills anyway?"
I've seen every specialist. One says I'm fat. Pulmonologist said my 02 was 90 and I had a partially collapsed lung but "she is obese so that could be the cause of her shortness of breath."
Not to feed into their fat shaming, but the truth is, yeah, I'm not a size 8, I'm 68 and don't want to be a size 8, but i'm "only" a 16/18. Meds I'm on make it impossible to lose weight. So tired of being fat shamed. And just shamed period. We didn't do this to ourselves…makes me mad. My PCP is not like that. I find men are more likely to fat shame a woman than a female dr. None of them said it in person. Not one mentioned my weight. It was only to the insurance company that they said it – and charged insurance for 15 minutes of "nutritional counseling." My pulmonologist??
I didn't have any lung involvement when I had it. After month 2, I started with SOB and low 02s. Many times 85-89. My pulse would also go thru the roof with any activity. Still, if i walk to the kitchen, it will go up to 130. More later. be
I'm a retired RN and when you tell me that your providers aren't that concerned with your elevated BP readings and your low O2 readings I feel so angry! These issues are important and, you're right, they could be fatal. Can you find other providers who would be more on top of these things? I'm really hoping that you can find some that CARE!
Hi, I'm a retired RN too. lol That's why I do know it's dangerous – esp the low 02. I'm like "hey folks, I'm destroying organs here."
I even went to the ER once when I had it the first time, They said as long as it didn't go below 90, I was fine.
I was on the monitor in the ER. They were horrible to me. They didn't even have me on 02. When the monitor would beep because I was below 90, they just came in and turn off the alarm.
yeah, right. I stopped asking for help at some point. My biggest issue, well, another huge one is I have CRPS and the amount of pain, the spread of the pain disorder, has taken me out of life. I'm now on crutches. My right knee had always been ok but with pain, i saw the ortho guy two weeks ago and he said I was 60% bone on bone. I didn't even consider this could be from covid! I have a replacement in my left knee but that was expected as I had knee surgery when I was 15. The right knee was fine and suddenly I have no cartilage. That's on top of the CRPS spreading from the hips down. One thing Pulmonary has said about my low oxygen, is it "could be" that the CRPS spread to my ribcage. Now, it's a throwaway diagnosis. They also said I was just fat until because I suddenly had a kidney stone for the first time in my life, and the kidney xray included part of my lung that showed partial atelectasis, did they decide maybe I was SOB and not just fat! Pulmonary didn't even do a lung xray, CT scan etc. I had had the a year before I saw them.
I do trust my PCP. She is actually a nurse practitioner in school to get her doctorate. She's I'd say in her 50s and actually was a nurse in Iraq and seriously injured by an IED. She knows pain and she knows what sick means. She treats me with respect but yeah, this BP stuff, I don't feel like she is taking it seriously enough. It's the MD in her office who saw me on an emergency basis when I was dizzy that put me on the meds.
I see my PCP/RNP Wednesday. It will be the first time I've seen her since being on meds and she can take a look at my log. Because of fibro, I can't use an upper arm BP cuff so I use the wrist one. When my BP is ok, they believe it, when it's high – they say they can't be trusted. I brought mine and they both read nearly the same.
It's just weird when people say the machine isn't right when our VS are off. if they are fine, the machine is fine. So weird but I have run into this constantly post covid. my 02 can't be 85, must be my device. And if I'm at the doctors and talking, it will always be 98. So I don't get believed. I bought a pulsox that connects to an app to I can keep them in memory. For a long time, I took a picture of the pulseox with my phone so i could SHOW.
Really really sad and I am very grateful to BE a nurse right now. I see people who can't advocate for themselves. I'm having all this trouble and I have no fear of medical staff of course. I think people are just over it. For everyone. And where I live, the local hospital privatized, so it's a medical mess. I have to change pulmonologists to have my sleep study next week done at a different location than the hospital lab. They are terrible and the other is better. but because I'm not using said hospital, they aren't allowed to even look at the results of the sleep study – I would have to repeat it at the privatized hospital if I want to keep them as pulmonologists.
They sign a NDA with the doctors in town. They have to order all their tests thru the privatized hospital or they can't use it at all. The next closest hospital is 30 minutes further. People don't understand what happens when things get privatized. What a nightmare. My personal PCP/RNP is the first one to give me the formal "long covid – post viral whatever" diagnosis. Nobody else wanted to commit. "But she's fat…as long as your 02 is above 90, Medicare says you are fine. "But it went to 88 during the walk test." "yeah, but that's ok."
So the walk test at my PCP last month, my 02 went to 79, then up to 85 and on 02, 95. Insanity. And I think at this point, I am going to die of long covid. I'm trying to fight and also try to adjust to the fact. And cry a lot. If I tell anyone I think I could die, they think I'm overboard with irrational fear. Course my history of bipolar and depression after a serious on the job years ago, makes people blow you off really fast. Stigma by doctors is the worst.
MY 02 was 79 in your office people!!!! eek.
Thanks for your response. I really feel we all need to talk to each other for validation if nothing else.
Sorry to hear about your experience. As a fellow POTS sufferer, I can say that meds help! I would find another cardio, even if an hour away, who specializes in functional cardiology. Are you taking a beta blocker to help control your bp?