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Myocarditis & unstable hypertension
Post-COVID Recovery & COVID-19 | Last Active: Nov 27 9:20pm | Replies (21)Comment receiving replies
I have unfortunately had Long Covid now for over 4 1/2 years first symptoms were high BP, breathlessness, fatigue etc, and put on 3 hypertensives.Then HR obviously up and BP still high so two more added. This Jan.then got diagnosis of postural hypotension as and standing in tilt table test BP down to 60/41. So yes I can get BP of say 172/80 just sitting down, but when out and about the same day feel the energy going from my arms, which is my signal that BP dropping, and if don’t sit ( or even lie down) very soon I will faint. The HR, which you don’t mention is easier to monitor instantly, shows an even odder pattern as will change by 30 bpm by bending forward on sofa just to pick up a glass of water on nearby table. I suggest you keep a daily diary of how you feel, when, what you’ve been doing ( exercise, household task, personal grooming, eating/ drinking, weather etc), along with BP and HR ( if you can record them).I have had ecgs, echocardiogram, 24 hour holster monitor, chest X-rays etc …all ‘normal’, even my own DIY home NASA lean test did not obviously show the postural hypotension, thought I had POTS. If you are interested I can recommend a website to navigate to, and links to others: Stopfainting.com run by leading UK cardiologist who has a particular interest in dysautonomia/ Long Covid.
Replies to "I have unfortunately had Long Covid now for over 4 1/2 years first symptoms were high..."
Wow I've had this going on for almost a year now can't work because fear of collapsing and it started with syncope I've had every heart test done and all normal for age 59 but had covid in 22 for 23 days.
My Unbalanced walking is the worst 😫 ever my ears are perfect 👌 I found out I do have neuropathy in legs and hands. A b d vestibular hypofunction.
Physical therapy dr noticed me getting dizzy standing up and asked if this happens regularly and I said yes.
He took BP sitting down it was 145/92.
He had me standing and took it and it dropped to 119/79 heart rate increased. Trying to get in touch with primary but she seems unconcerned ugh I'm tired of Dr's.
Trying to get on w Im trying to get on with Mayo clinic.
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Thank you so much for the quick response. The high BP was a significant factor in determining the myocarditis. High, I mean 220/130 & hospitalized for 8 days w/ viral myocarditis (abnormal echo & abnormal cardiac catherization & ekg) which may have been caused by covid. My pulse rate is about 60-65 & DOES NOT fluctuate wildly. When I take BP meds to bring down the bp it can drop too low. The Dr's have no explanation now as to why bp keeps spiking even though the myocarditis is improving. I get very tired & must rest much more than usual. Exercise tolerance is low & I was walking 1 hr/day. My BP doesn't drop upon standing as is common in POTS. It's from the medications. One day I can be 180/110 & the next day 70/40.
ALL of my blood work is normal even my kidney function.
At this point I can't rule out anything. I will keep a diary as u have recommended. Maybe i have a different form of POTS & Md's just not recognizing it due to the myocarditis. Their thinking 1 way & it may have morphed into Pots. I also contacted the mayo clinic 2 c if I can get seen by a MD there. I do have a history of hypertension but well controlled until the myocarditis.
I would appreciate the website u mentioned on dysautotomia/long covid. I have had covid 3x even though I was vaccinated. Let's keep in touch as we can aid eachother in our ongoing long covid. I hope u feel better & have a full recovery!