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.

Hi @artistandtwin. I am so sorry you have endured all that but so grateful you shared it to give realistic expectations to everyone. I had a meltdown from my journey since Dec 2021, posted couple days ago I think🙃. Many covid created issues such as lung ct verified ground glass opacities and nodules, brain mri verified lesions and benign growth with likely future surgery required, lab test verified pituitary and thyroid destroyed, long covid doctor diagnosed POTS, PCP office verification of fevers unknown origin & Post Exertional Malaise, Sleep study verified Apnea, and so many other daily challenges that I still find myself holding furniture or the hallway walls. I have had indescribable random pressure and headache head pain since the beginning and have yet to reach the right doctor as Im still working on seeing cardiologist as priority. Pacing, PT, ST, and daily alarms for everything ie eating, pills, only 5 min up for getting food/bathroom/ small task and my house has not been cleaned but its just me and very grateful Im still here and able to be in my home. I hope sharing this gives roadmap for others seeking treatment and your efforts have given us all inspiration to keep going🌈 Thank you!

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.

I’m not sure what the VNG test is??? I can’t find it listed when doing a search. I really don’t know all the tests done. I have not received the final report as yet. Thanks for the suggestion. I will follow up.

I had such a test last week and it was negative, but I am still just as dizzy as every. I’m not sure where to turn now.

Have you seen a neurologist??

Eeg , cognitive testing scans

Mine showed
Encephalitis

The only dr that seems to have knowledge

My mri showed nothing
Finally feel heard
And has directed me
Meds and therapy
Brain 🧠 eye
Communication

Hi @artistandtwin. I am so sorry you have endured all that but so grateful you shared it to give realistic expectations to everyone. I had a meltdown from my journey since Dec 2021, posted couple days ago I think🙃. Many covid created issues such as lung ct verified ground glass opacities and nodules, brain mri verified lesions and benign growth with likely future surgery required, lab test verified pituitary and thyroid destroyed, long covid doctor diagnosed POTS, PCP office verification of fevers unknown origin & Post Exertional Malaise, Sleep study verified Apnea, and so many other daily challenges that I still find myself holding furniture or the hallway walls. I have had indescribable random pressure and headache head pain since the beginning and have yet to reach the right doctor as Im still working on seeing cardiologist as priority. Pacing, PT, ST, and daily alarms for everything ie eating, pills, only 5 min up for getting food/bathroom/ small task and my house has not been cleaned but its just me and very grateful Im still here and able to be in my home. I hope sharing this gives roadmap for others seeking treatment and your efforts have given us all inspiration to keep going🌈 Thank you!