Myocarditis & unstable hypertension

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.

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.

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.

Dizziness, is a weird symptom from my experience…I first got it with stiffness and pain in back of the neck over 40 years ago, when dr. said it was ‘a virus’, and got a purpose made collar made for it as it would return for say a week then off again. Then 15 years on got worse, with seizures that were looked into ( brain tumour, epilepsy etc ruled out), and drs., and later chiropractors, decided it was due to trapped/ squeezed nerve as atlas bone was small and vertebrae became disaligned, and muscles around became inflamed trying to protect site. So lots of dizzines that I got used to, and could differentiate into vertigo with short head spin as moved neck awkwardly ( eg taking clothes out of tumble drier), and instant grab to hold onto something, other times it’s like walking on a boat deck on a rough sea, or being drunk ( without the gaiety).. lasts for minutes while I walk around the house holding onto furniture, or an arm. I have learnt over the years what tends to bring the dizziness on and now sit down to chop veg., have a small pillow in car ( even cinema) etc. Then drugs will do subtle versions: beta blocker bisoprolol had real head over heels spins like falling of a huge cliff; Bendroflumethiazide a rough sea. Strangely I don’t associate the postural hypotension with dizziness, but that might be because I’m used to it, I just feel a drain in energy in the upper arms like a huge magnet coming into play, and I have to sit down immediately ( even lie down on shop floors). Perhaps you should try to get a tilt table test to see what is actually happening to your BP on standing and staying standing for up to 15/20 mins. You could try a NASA lean test at home with a BP monitor, but I know that didn’t pick up my PH , I just thought I’d got POTS. I always find it useful to keep a daily health diary recording symptoms and when what you were doing etc, align with Bp/HR and in my case as diabetic too blood glucose levels ( as that can cause wobbly dizziness). So neck position watching tv, reading, on laptop, or cooking etc, what you have eaten/ drunk, household tasks, exercise etc…you will probably find patterns…useful for yourself to try modifications but also to show drs. Lastly try a very gentle McTimoney trained chiropractor to manipulate your spine, I go every 6-8 weeks, to align and loosen up vertebrae, plus ribs, hips etc. to reduce dizziness!

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!