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

I contacted Covid late 2020. I suddenly lost all my bodily functions, my husband had to get me in the car. Was treated well with remdisavir. Went through home therapy and got pretty much back to normal. I am on oxygen, yrs prior to Covid, also have had prior vertigo. I have had all vaccines. But late last year I started having balance problems. Have fallen twice (minor) falls last year on my butt. Probably fell 4 - 6 times this year, most on my buttocks. The last two were more severe. Went to pt in June for balance and it helped a lot. Except I fell big time the night of my last therapy appointment. Went to therapy again after my leg strength didn’t get better. That worked out great. Was discharged again and face planted on the bathroom floor. Had stitches in my lip, my dentist tried to stabilize my front teeth with a wire, I’ll find out in a couple more weeks if that worked any. But thankfully I didn’t break any bones. It all just reminds me of my Covid symptoms again. I have learned on my own that I cannot turn my head without being stable like most. On the ground I will go. I’m good at home, but haven’t ventured out with friends because you never know when the imbalance will strike. I had a mild stroke over 20 years ago, so I’m on blood thinners. Even had a recent MRI that only showed my previous stroke.
It’s just good to talk with people who know what you’re talking about. God bless you all. 🙏🏼

Oh, my goodness, can I ever relate to this! After being really sick with covid & unable to keep even vitamins or anti-nausea meds down for 2 weeks (I was able to drink water & juice), I was extremely fatigued, dizzy, and shaky. Then, 1 month after covid had hit, I woke up in the middle of the night with room-spinning vertigo. It was not episodic. It was a constant, 24/7 spinning in my head for 5 straight months. I had nystagmus (eyes bouncing side to side like I'd just gotten off a merry-go-round) for a good 10 minutes that morning. I could barely walk down the hall. For most of those 5 months, I had to hang onto the walls as I walked anywhere. My legs were uncoordinated. I walked with a wide-based, slow, ataxic gait like I was 90 yrs old but I was in my middle 50s.

I saw a dr., tried BPPV exercises at home which did nothing. Then I saw a P.T. for vestibular P.T. Not sure that helped. By my 3rd visit, my PT & I both knew I needed to see an ENT. When I FINALLY got to see an ENT (2.5 mos after the onset of my 24/7 vertigo), he told me there was no medicine he could give me, that I needed balance testing (YA THINK?!), an MRI, & to see a neurologist. I had times at work (yes, I forced myself to work even though I could barely walk or stand) when I couldn't make my feet move. I knew there was something wrong with my BRAIN and it was more that long-haul covid "brain fog"! I thought the MRI would show a brain tumor for sure.

I suffered from excruciating headaches in the back of my head, red eyes, hand tremors so bad I couldn't hold a spoon without dropping it, vertigo so bad that I couldn't touch my nose with my finger, extreme tingling in my legs, and the debilitating fatigue that made it hard to stand up, my less lift my arms to take a pan out of the cupboard. This went on for over a yr.

It's been 20 months since the vertigo began and I JUST found out what's been causing it!

n the end, after seeing all kinds of specialists & having all kinds of tests, here is what was wrong with me.

1. I had low ferritin, which means my iron stores were low. So I began taking iron every other day as low ferritin causes "all sorts of neurological symptoms". The iron helped my vertigo become episodic and not constant. BUT it was NOT BPPV.

2. All 3 of my brain MRIs (over a period of 5 mos) showed "moderate mucosal thickening" in the sphenoid and ethmoid sinuses (deep in the skull behind your eyes & nose) and mucous retention cysts. Everybody kept focusing on a very tiny stroke I'd apparently had during all this, but everyone also said this stroke wouldn't have caused any symptoms. Guess what? The sinuses were the problem all along and my ENT missed it!

My 3rd neurologist is the one who explained my sphenoid sinus issues were so bad, so extreme, they were putting pressure on my cerebellum & brainstem and THAT'S why I was suffering with 24/7 & later episodic vertigo, tingling in my legs, incoordination of my legs, inability to move my feet on occasion, hand tremors, & headaches! It took me 20 months to find this out!

In the meantime, my biggest blessing was that I'd seen an immunologist/ allergist and he'd had me start some sinus meds that have really helped. I didn't know why they were helping so much, but now I do. Every day I use NeilMed sinus rinse, azelistine Rx Nasal spray (2×/day), fluticasone Nasal spray, cetirizine OTC allergy pill, montelukast Rx pill, and now he's also having me start prednidone eye drops in my nose 2x/day. Plus, I use Benzedrex inhaler as needed and my PCP had me try dramamine/anti-vert (meclizine) but I don't think it helped.

So, now I'm waiting to see a new ENT ... one who will recognize what all the MRIs showed & what all the MRI reports clearly listed about my sphenoid sinus issues & cysts. I may need a sphenoidotomy (sinus surgery). I can't BELIEVE it took THIS LONG for someone to figure out what was going on with me, but I pushed & pushed until I found someone who figured it out.

Apparently, I've had sinus infections I didn't know about and quite possibly this is why I had so many random fevers and infections (at least 4 or 5 within 12 mos after having covid).

And sphenoid sinus infections only happen 1-3% of the time ppl have sinus infections. Usually, sinus infections are in the front of the face. That's why nobody was figuring this out I guess.

Plus, sphenoid sinus disease doesn't usually put pressure on the cerebellum & brain stem like mine did, so everyone thought this was a benign finding on my MRIs.

Good grief, this has been a long haul. I'm doing better but still suffer with vertigo each time I move my head, in dim or bright lights, in certain stores, in visually stimulating environments, etc. Hopefully, I'm a candidate for sinus surgery and hopefully this was helpful to you.

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?