Post-Covid dizziness/off-balance, as most troubling symptom

I have had the same symptoms on and off. It's very disturbing and I feel unsure of myself often. I had covid in August 2020 and post covid symptoms are still part of my everyday life. I do have a low resting HR and low BP so that can't help. Even though I have not been officially diagnosed with POTS, I just started a POTS (Post Orthostatic Tachycardia Syndrome) exercise program. U of MI's Post Covid Clinic is treating symptoms like ours with this regime, even thought we don't fit the exact diagnosis of POTS. I'm only three weeks in. We'll see. Here's the website: https://www.dysautonomiainternational.org/pdf/CHOP_Modified_Dallas_POTS_Exercise_Program.pdf

Was your "walking on ice skates" feeling ever resolved, I have the same problem and when I stand or sit I move constantly! Post Covid by one month, Meclizine doesnt seem to help at all.

New to the group. So glad my brother found this site for me! Helps so much to see I’m not the only one still dealing with issues.
I was hospitalized November 2021 with Covid pneumonia for one week. Although most of my symptoms have gone away-I’m still dealing with dizziness and what I describe as a tightness in my neck, face, shoulders and left arm and leg. Physical therapy did not work for me. Currently seeing a neurologist who seems to think my blood vessels are “irritated”. I’ve been on a low dose of Verapamil for 4 weeks now. No change. Was not an anxious person before my Covid-but some days now I feel I’m losing my mind. I pay more attention to things going on in my body now. Praying all these issues go away soon and I hope this isn’t permanent. That’s my worse fear-this is my new normal (or I get worse). Trying to be patient like everyone tells me. That is not an easy thing to do. I have not felt like myself since last November. But in the same note-I’m thankful I’m not worse. Hope we all find relief soon❤️

New to the group. So glad my brother found this site for me! Helps so much to see I’m not the only one still dealing with issues.
I was hospitalized November 2021 with Covid pneumonia for one week. Although most of my symptoms have gone away-I’m still dealing with dizziness and what I describe as a tightness in my neck, face, shoulders and left arm and leg. Physical therapy did not work for me. Currently seeing a neurologist who seems to think my blood vessels are “irritated”. I’ve been on a low dose of Verapamil for 4 weeks now. No change. I’ve had blood tests, CT scan and MRI-all have come back normal.
Was not an anxious person before my Covid-but some days now I feel I’m losing my mind. I pay more attention to things going on in my body now. Praying all these issues go away soon and I hope this isn’t permanent. That’s my worse fear-this is my new normal (or I get worse). Trying to be patient like everyone tells me. That is not an easy thing to do. I have not felt like myself since last November.
Would like to hear from others dealing with issues and how long before they went away. Also want to hear different things you’ve tried. Thanks

Hi @auntb65, I'm sorry to hear that you, like others, are still dealing with post-COVID issues, most notably dizziness. @kirstenk2003 @welchllb @rinadbq @mkportzen and @teachols can relate. @ginalambiris mentions ear problems after seeing an ENT that help resolve some of her issues.

@pinkcalla127, that must be a very odd sensation to feel like you're walking on ice skates. Is this also accompanied with an off-balance feeling or dizziness?

@coopm0m can you tell us more about the eye exercises that helped you?

I wonder if anyone has discussion proprioception with their PT? Proprioception also called kinesthesia, is the body’s ability to sense its location, movements, and actions. It’s the reason we’re able to move freely without consciously thinking about our environment. Injuries or medical conditions that affect the muscles, nerves, and the brain can cause proprioception impairment. Relatively simple balance and proprioception exercises can help.

Has anyone tried proprioception exercises? Do they help you?

I have a side to side much slower gait when walking (like skating), I was walking 10K steps daily before I got Covid, and now I cant walk for exercise for fear of falling. I run into door jambs when going through my house, I have balance issues, I had really bad vertigo the day after I finished the Paxlovid medication. I had vertigo previously, but Covid really ramped that up to the point of needing nausea medication. I'm on my 3rd bottle of meclizine. Sometimes when I sit, I cant maintain the position without moving a great deal like someone with Parkinson's.

Hi Colleen, I went to a physical therapist 3 days a week for a month. They had me do different exercises. I also did these exercises at home. I performed the exercises 7 days a week without any relief. Thank you for your reply and info.

I had dizziness with my 11 days of fever with covid. But that dizziness turned into 24/7 vertigo (not episodes of vertigo but constant vertigo) a month after getting covid. The 24/7 vertigo continued for 5 months. During that time, my dr referred me to a physical therapist. My proprioception was so off that I couldn't hold my electric toothbrush without bumping the vibrating brush portion onto my teeth.

I had to hang onto walls so I wouldn't fall. The P.T. gave me eye exercises and I did tons of balance exercises at P.T., twice a week for 3 months.

I couldn't drive or use stairs for 2 months. My husband would drive me to & from work every day. I felt like I was falling out of my chair at work, like the floor was unstable as I walked, like the end of the hallway was "jiggly". I couldn't turn my head from one computer monitor to the other without my head just spinning. And going to bed was the worst. It felt like my head was hanging down when, in fact, my head was up on pillows. I felt like I was going to fall out of bed. I would grab onto my husband or onto the sheets to keep myself from falling.

By my 3rd day of P.T., my P T. and I both knew I needed to see an ENT, but it took a month to get in to see him. When I did, he could see my extremely slow, wide-based, ataxic uncoordinated gait. Yet my ear pressure and hearing tests were 100% normal. He had me follow his finger with my eyes and I believe my nystagmus showed up. Right away, he told me there was nothing he could do to help me, that I needed balance testing and to see a neurologist. I couldn't get in for balance testing for another 6 weeks! And the neurology referrals (to 3 different neurologists) took 3-4 months each! It was crazy.

In the meantime, the eye exercises helped.

When I FINALLY got in to see a neurologist, 6 months after I'd gotten covid & 5 months after my terrible 24/7 vertigo had begun, she immediately wanted to check my ferritin level. She said anything below 50 can cause all sorts of neurological issues. Mine was a little less than 38. So, I began taking 65 mg of iron (ferrous sulfate) every other day and that helped me quite a bit, too.

It's now been almost 13 months since I got covid the first time and I still have vertigo, but at least it's now episodic (whenever I turn my head or move my body). But it's not as debilitating as it was. I can drive and use stairs (when I feel strong enough). Going upstairs is much easier than going down.

My neurologist asked me to walk heel-to-toe 10 months after covid and I couldn't do 2 steps without grabbing onto a wall, so she sent me back for more P.T.

This time, I'll be doing 6 weeks of PT, mostly working on strengthening my legs, my core, and my arms, but some balance work, too.

I hope this was helpful for you. If you haven't had your ferritin checked, do that. Best of luck to you. Keep us posted!

Your description of " tightness" is what I have in both legs. Started out just shins 2months ago, but now wraps both legs to tops of thighs. I also have normal blood labs, CT scan and MRI. In addition I experience anxiety & depression, loss of taste&smell, unreliable balance, brain fog. Been waiting 2months to see Neurologist, 2 months more to go!October28th.
Long haulers are just a mystery

Sounds like we are very close to experiencing the same symptoms. I did not lose my taste or smell. And I haven’t had to deal with depression. I was lucky enough to get in to see my neurologist 2 weeks early due to a cancellation. Just a suggestion-call your neurologist and ask to be put on a waiting list for cancellations. Keeping you in my thoughts!