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Long Covid & High BP when standing
I’m 62 and got caught Covid for the 3rd time in June.
The first time in 2020 almost killed me as I had 5 Pulmonary Embolisms, pneumonia, and two hospital stays.
In between I was treated for a huge number of PVCs ( xtra heartbeats) as one out of three beats was a PVC. Over a million in 2 months.
I was able to “ cure” them by having two areas ablated, but not before also installing a defibrillator after the first attempt triggered VFib.
Anyway, to make a long story short, I had been doing better until round three of Covid. Prior to this I had no heart issues.
This last round of Covid in June never really went away.
Whenever I am out and about, or even around the house, I get winded, short of breath and if I don’t sit, may feel dizzy, weak, woozy, shakey.
I thought my BP was dropping.
I ordered a home BP cuff and my BP was fine sitting so I took it standing. It was consistently 160/113 with a pulse around 90-100.
I went to my Drs to include my PCP and heart Dr. and they did not listen to me when I said it was high when standing. Just took it sitting and it was normal.
My heart Dr. did order me were a zio patch for a week but nothing showed.
Basically since June I can hardly stand. I literally sit in a chair most of the day. I have no desire to do anything. I get so out of breath and tired.
My heart Dr. said he would put in a request to Vanderbilt Dysotonia clinic. This was in June. I never heard from them so he sent in another request a few weeks ago Still nothing.
Finally last week I had my 6 month Rheumatology appt ( I also have Psoriatric Arthritis) I told him I was still feeling as bad as I was in Aug of last year when I expressed my exhaustion to him at that time.
This time, he listened and said he would put in an order for a tilt table test at Vanderbilt Dysotonia clinic. Within two days, an appt was set for the first week of March.
I am currently on Sototal which gets myBP down to the 140/100 range..
I guess I am wondering if others have this issue. It seems like more and more people are getting BP issues after Covid, but I’m perplexed why it is basically unknown by most Drs.
Googling these symptoms would lead you to believe it’s serious enough to go to the ER but basically they will just get it lowered and sent on your way.
My heart Dr. although kind ( and my GP) seemed generally attentive, but really there is no sense of urgency.
I messaged my heart Dr. last week to ask if anything showed up on my heart Moniter as my heart rate and BP were particularly high and I just received a brief note that nothing “ showed up” on their transmission I sent.
No concern, advice or anything.
I feel my 80 yr old relatives are more active than me and I feel guilty about not being able to do more than a load of laundry or feeding our dog.
Looking for advice or others going thru similar experience.
I cannot live this way. I’m embarrassed to tell my husband every day that I essentially did nothing.
Just getting dressed is exhausting.
My blood work has checked out fine btw.
I have pretty much given up on feeling normal again.
I’m pretty sure Covid did a number on me and I’m sure many others, but there has to be a way to treat this right?
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I had very early Covid and never felt well after that.
Covid affects your immune system and you can later get more than one syndrome/disease.
My labwork showed very high platelets and I was diagnosed with ET, Essential Thrombocytosis. Meds brought my numbers closer to normal.
I still felt terrible when I stood up, heart racing etc and after 2 yrs of this I saw a cardiologist. My pressure changed 30+points from sitting to standing and he diagnosed POTS, Postural Orthostatic Tachycardia Syndrome. I’ll start a 3rd med because the first 2 meds haven’t worked.
Labwork doesn’t diagnose POTS - all normal.
There is a 15% rise in POTS since Covid.
My doc said I didn’t need a table tilt test because my diagnosis was obvious…
You could have many things but read up on POTS symptoms and it’s good you’ll have the table tilt test.
Good luck!
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2 ReactionsYes, Since getting Covid in 2022 my BP is always high. I've been on at least 5 medications nothing has lowered. Now I wear 3mg Clonidine Patch and when it spikes I take .1mg clonidine pill. I can take up to 3 pills per day. I log it daily and give to my Dr. He is very concerned I will have a stroke. He tried me on Ivermectin but I started having side effects. I told him I want no more pills. I think because of Covid my body has become toxic. This has consumed my entire life.
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3 ReactionsOh thank you for your reply!
How do you feel on a daily basis?
Please keep me posted- I wish you well on this journey!
Thank you, I’m so sorry to hear this. I hope you see great results from your medication. It’s such a terrible issue!
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1 ReactionMe too..super high blood pressure..in the 200 range..cant get it down..covid three times..last round september 2024. Fainted three times..blood pressure high, stood up after sitting or working, and it dropped causing me to faint, they said it was orthostatic hypotension, one dr said I probably had dystonia, but the physician they referred me to has a closed practice. Mayo wanted me to have a tilt table test three years ago, but my insurance said it was not medically necessary. I am 72, still working part time, and fear falling again. The second time I fainted had a head injury, broken nose, and concussion. Second time an injury to my leg, which caused so many problems. What is the drug you are taking, does it have a lot of side effects. I am on losartan, many side effects, so I dropped the dose to 75 mg. Please stay in touch, we have similar stories. Prayers and hugs for you.
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2 ReactionsOh how awful! Yours is much higher than mine!
I’m taking Sotalol. It takes me down to around 140/100.
My BP is normal when sitting so I hate to bring it down lower.
Even when standing it is still high at this rate.
I will have my testing done next month.
I really don’t have much hope as it seems there is only so much they can do.
I will keep you posted!
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1 ReactionHi..thanks for your reply..I asked my doctor today about the Sotalol you take , he said I could not take this med, because it can lower your pulse and mine is really low already..he wants me to add hydochlorothiazide 12,5 mg and try this one once a day..my pressure still real high today..high 190's over 108...I need to have a tilt table test..have you had one..sorry cant remember if you had one. I think they do them at mayo in rochester, I need to find out who does them in the minneapolis mn area. Thinking about you..thanks for replying to me..I feel so frustrated..I look good on paper , but that does not tell how I feel daily. Have a nice evening..kitty2
Hello! Oh how interesting to know about the Sotalol!
Yes it seems like your BP is high, but drops when you stand?
It’s so confusing!
Yes my BP is normal but gets high when I stand.
I can see why your Dr. would think this medication would make your heart rate lower.
I think there are so many different forms of Dysautonomia.
I had two ablations a year ago on my heart because I was having PVCs, ( an extra heart beat every third beat)
Therefore I have a heart Dr. I see who specializes in the “ electronic” workings of the heart- not really serious, but led me to being exhausted.
He was referring his wife to the same clinic he referred me Vanderbilt Dysautonomia clinic in Nashville as we are luckily close to this hospital.
His wife was having the same issues as you.
This was in August.
He said it would talk a while to hear back for an appointment.
I had not heard from them by December so I called and they said they saw no request from my Dr.
Sigh. So I called my Dr.who confirmed they sent the request, but would resend.
Still nothing.
I happened to be at my Rheumatologist office about 2 weeks ago. I explained how I was still wore out with high BP and he said I needed to get a Tilt table test first before the clinic would see me. ( I thought that is what my heart Dr. intended to schedule me for this)
So he sent in a request and in two days, my appt was scheduled for March!
Such a long process to go through.
My heart Dr. said after Covid, it is becoming more prevalent to have BP issues.
I will remember to ask how is wife is doing the next time I see him.
Are you seeing a general physician or a heart physician?
You may want to ask him for a referral if so.
I’m sure there are places by you that can do that.
That is quite a good medical area from what I understand.
I feel lucky to have Vanderbilt here as they seem to be one of the top research hospitals for these issues.
Please keep me posted on your new medication and how it is working for you!,
A tilt table test is a good idea, but you could also get tested by taking it sitting down then taking it standing up. It tests for orthostatic changes if I correctly. Recall. They don’t that on me but it didn’t matter, they actually dx’ed me with a vestibular problem
Sorry. I’m blathering
Yes, Vanderbilt is fantastic!
Hi @tallej01. Hope this comes across kind helpful way intended as my going on 4 yr journey sounds so much like yours and so many others here. One of my ER providers explained our vascular systems are affected in so many unusual ways that do not show up. So many of our numerous body systems tests that state “normal” with just outside of qualifying range at time of testing or new issue that test not available for etc. Pacing and Physical therapy techniques are critical in dealing with the bp/pots etc. Hopefully your healthcare system can also provide professional nutritionist for tailored food regimen to help your vascular system blood flow and possible other unknown areas to ease symptoms as well. Wish you the quickest healing/adaptive journey possible with many joyous new
moments 🌈
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