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

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.

Meclazine has helped me a bit too. I do think there is something to taking antihistamines and eating low histamine foods.

The ENT referred me to the National Dizziness and Balance Center. I "passed" much of the testing, but they said they have still found that people with long covid respond well to the physical therapy. I have been doing the exercises for a week and a half, and I do think I'm seeing some relief. Many physical therapy places treat dizziness and balance issues and while the cause and expression from Covid may be different, maybe the same exercises are helpful. That is what I am hoping! Hoping to get back to work soon!

Your symptoms sound much like those I had in 2019. I suspect I had Covid in March 2019 (there were no tests at that time). About 3 months later, I was having a lot of buzzing in ears, pressure in ears and sinuses, vertigo and balance issues. You described it really well. I felt like I was being pulled or listing to one side. So weird! I started with a couple rounds of antibiotics that didn't really help. Also had unexplained tachycardia and CT, x-rays, echo and stress test were all fine. It took more than a year to start feeling myself. Things that helped were chiropractor, massage, targeted stretching, and supplements. Alpha Lipoic Acid and a good pre-biotic/pro-biotic for gut health plus B and D vitamins all helped. A whole food diet limiting sugar or sweeteners and getting a good night's sleep also makes a world of difference. I still have little issues now and then, but they are minor compared to how it all started! I wish you the very best and hope you have a quick recovery!

PT helps but never eliminates it--3 years and still trying--

Long Covid balance
Has anyone tried cannabis of any derivative for symptom relief??

The ENT referred me to the National Dizziness and Balance Center. I "passed" much of the testing, but they said they have still found that people with long covid respond well to the physical therapy. I have been doing the exercises for a week and a half, and I do think I'm seeing some relief. Many physical therapy places treat dizziness and balance issues and while the cause and expression from Covid may be different, maybe the same exercises are helpful. That is what I am hoping! Hoping to get back to work soon!