1. < Post-COVID Recovery & COVID-19

Swaying feeling occasionally when I lay down nearly every night

Posted by kennedyakelly @kennedyakelly, Oct 29, 2022

So I had Covid in May this year and I had become extremely congested to the point I could barely hear and I also developed a really bad sinus inflammation post Covid but took antibiotics for that. A few days into having Covid I woke up in the middle of the night to a really weird swaying back and forth feeling in my head. I freaked out and say up quickly and once I opened my eyes and sat up it went away. I kinda ignored it and thought it could have been from NyQuil. That same feeling has happened post Covid every now and then. I think it could be vertigo but here is the weird part. It only happens at night when I’m waking up but it had happened on occasion during the day when I’ve laid down (I was having anxiety in both of these occasions). The feeling is sometimes stronger on some days than others but it’s always the swaying back and forth feeling. I’ve also noticed that I never feel dizzy it’s literally just a swaying feeling in my head and when I sit up/open my eyes the feeling goes away. I do feel kinda like my body is moving when I sit still like laying in bed, sitting in my car, etc. It also doesn’t happen every night, it’s very random and can last 3 nights in a row and then goes away for a week or two. When it comes there is also some nights when I sit up and it goes away but when I lay back down and close my eyes it comes back and nothing helps I just have to wait it out and keep sitting up. This makes me feel like it’s not Vertigo or BPPV because no maneuver I do makes it go away but I also don’t know a ton about vertigo. I went to a neurologist and he did an MRI and it came back normal and he tried to do an EEG but I literally freaked out and had to stop because I began having the swaying feeling during and it gave me a panic attack. I’ve been to about 7 Doctors and nobody has helped at all. They all say they don’t know what’s going on. This has caused me many sleepless nights and anxiety about going to sleep. I’m a 23 year old female student so this lack of sleep has really made my mental health become horrible. I have an appointment with an ENT but I’m so scared something bad is going on.

Interested in more discussions like this? Go to the Post-COVID Recovery & COVID-19 Support Group.

artistandtwin | @artistandtwin | Oct 29, 2022

Yes, I would say you have vertigo. I had covid in Aug. 2021 and felt dizzy at the time. But month later is when true vertigo kicked in. In the middle of the night, as I rolled over, my whole world was moving. It woke me up several times and I forced myself to go back to sleep to avoid that awful feeling. I assumed I would feel better when I woke up, but I did not. Instead, when I woke up, it felt like I was spinning as I laid in my bed. I thought it was BPPV because my twin sister had gone through BPPV in the past. What I didn't realize is that the word "parixysmal" in BPPV means it's epusodic. My vertigo was not episodic. I had extreme vertigo 24/7 for 5 full months. It was awful. I couldn't watch the water flow into the bathtub, I had nystagmus in my eyes that first morning. I had tremors, disorientation, incoordination, tingling all through my body, such extreme weakness & fatigue that I would wake up moaning every morning. It was so hard to force myself to get out of bed each morning. I barely had re strength to hold my toothbrush and forget the hair dryer. I had to let my hair air dry. My vertigo was so bad, as I used my electric toothbrush, I would accidentally hit my teeth with the hard casing of my toothbrush instead of the bristles. I had the most excruciating headaches in the back of my head. I had to put pillows under my neck so nothing would touch the back of my head in bed. My eyes were almost always red. My dr referred me to a physical therapist who tried the BPPV exercises (which I'd already tried at home ... to no avail). By the 3rd PT appt, my PT & I both knew I needed a referral to an ENT/audiologist. By this time, I had quit driving and using stairs. I'm 57 and was otherwise healthy before all this but my husband had to start chauffeuring me around (to work, to dr appts, etc). I could barely walk and began using a cane, but the cane really didn't help because it took additional coordination to use it, which I did not have. I even tried a walker, but again it made me weaker to use the energy to move the walker & it really didn't work well with my uncoordination. It got so bad, there were a couple of times when my feet just wouldn't move. I was so scared, I started crying! I thought I must have a brain tumor that they hadn't yet discovered.

The ENT said my hearing and ear pressure tests were perfectly normal, but I needed balance testing and a referral to a neurologist. It took forever to get in to a neurologist.

When I finally saw a neurologist, she told me my ferritin was low which can cause "all sorts of neurological issues". So, she had me start iron which I take every other day. She also gave me a nerve block shot in the back of my head for my daily "migraines" which she said were actually occipital neuralgia. This neurologist said my MRI showed I'd had a stroke but not in an area that would explain my vertigo, wide-based, slow, ataxic gait, or incoordination. The iron began helping and my vertigo finally began to be more episodic (3-4 bad days followed by 3-4 good days at a time).

I was in PT for 3 mos, until I was no longer improving. I saw another neurologist who had me do another MRI. She said the 2nd MRI didn't show that same spot that had been determined to be a stroke, so I had definitely not had a stroke. She believed my inability to eat any food or keep even vitamins down for nearly 2 weeks with covid had caused my thiamin level to drop too low, causing Wernicke's encephalopathy which can leave a person with permanent brain damage. However, that didn't explain the fact that my vertigo, tremors, headaches, uncoordination, fatigue, etc were now coming & going. It was no longer constant. My neurologist admitted that brain damage wouldn't come & go like that.

We did all sorts of tests (EKG, EEG, 3-day heart monitor, 5-day in-home EEG with video monitoring 24/7, EMG nerve conduction study, lumbar puncture, blood work). Nothing really showed up.

But I kept getting various infections & fevers after covid (diverticulitis, sinus infections, tooth infections). My Immunoglobulin M showed up as low and I read that could cause me to keep getting random infections. AND I got covid AGAIN! So my PCP & my neurologist both suggested I see an immunologist.

The immunologist/allergist did more for me in the 10-minute telemed appt than all the other specialists I'd seen the entire 12 mos prior! I read some of my MRI results to him, which talked about moderate mucousal thickening in my sinuses along with two mucous retention cysts in my right sphenoid sinus and also in my ethmoid sinus. I didn't know it yet, BUT MY SINUSES WERE CAUSING MY VERTIGO & OTHER SYMPTOMS!

My immunologist has me on a sinus regimen that has helped me get back to almost normal now!

Since you had a lot of sinus issues with your covid, perhaps you should see an immunologist/allergist, too? Maybe that's causing your issues.

In the meantime, you can start a sinus regimen with OTC mefs and see if they help. They won't hurt you anyway.

Each morning, I use a NeilMed sinus rinse (aka "netti pot"). Then, I use a prescription nasal spray (Azelistine/Asteline). After work, I use 2 sprays in each nostril of OTC fluticasone (Flonase). At bedtime, I use my Azelistine nasal spray again and take 2 pills: 1 OTC cetirizine (Zyrtec) and 1 Rx montelukast (Singulair).

Good luck, dear. I pray that your anxiety will be decreased and that some of these suggestions may help you.

REPLY
1 reply
artistandtwin | @artistandtwin | Oct 29, 2022

P.S. I forgot to mention, when my vertigo was at its worst, it was the worst when I was changing positions (getting into or out of bed, sitting to standing, lying down to sitting, etc). It was so bad, I had to hang onto my husband and/or the sheets in bed because I really felt like I was falling out of bed. Plus, I had to hang onto or touch the walls as I walked across a room or down a hallway. I'm betting these are familiar events for you as well.

REPLY
Moderator
Colleen Young, Connect Director | @colleenyoung | Oct 30, 2022

Hi @kennedyakelly, I hope you saw the very helpful post @artistandtwin wrote to you.

You may also be interested in further tips shared by members like @artistandtwin @mimioto @zubes1970 @auntb65 and more in these related discussions:

– Continued Post-Nasal Drip and Constant Mucus in Throat https://connect.mayoclinic.org/discussion/continued-post-nasal-drip-and-constant-mucus-in-throat/

- Post-Covid dizziness/off-balance, as most troubling symptom https://connect.mayoclinic.org/discussion/post-covid-dizzinessoff-balance-as-most-troubling-symptom/

REPLY
dsalvucci | @dsalvucci | Oct 30, 2022
In reply to @artistandtwin "Yes, I would say you have vertigo. I had covid in Aug. 2021 and felt dizzy..." + (show)
@artistandtwin

Yes, I would say you have vertigo. I had covid in Aug. 2021 and felt dizzy at the time. But month later is when true vertigo kicked in. In the middle of the night, as I rolled over, my whole world was moving. It woke me up several times and I forced myself to go back to sleep to avoid that awful feeling. I assumed I would feel better when I woke up, but I did not. Instead, when I woke up, it felt like I was spinning as I laid in my bed. I thought it was BPPV because my twin sister had gone through BPPV in the past. What I didn't realize is that the word "parixysmal" in BPPV means it's epusodic. My vertigo was not episodic. I had extreme vertigo 24/7 for 5 full months. It was awful. I couldn't watch the water flow into the bathtub, I had nystagmus in my eyes that first morning. I had tremors, disorientation, incoordination, tingling all through my body, such extreme weakness & fatigue that I would wake up moaning every morning. It was so hard to force myself to get out of bed each morning. I barely had re strength to hold my toothbrush and forget the hair dryer. I had to let my hair air dry. My vertigo was so bad, as I used my electric toothbrush, I would accidentally hit my teeth with the hard casing of my toothbrush instead of the bristles. I had the most excruciating headaches in the back of my head. I had to put pillows under my neck so nothing would touch the back of my head in bed. My eyes were almost always red. My dr referred me to a physical therapist who tried the BPPV exercises (which I'd already tried at home ... to no avail). By the 3rd PT appt, my PT & I both knew I needed a referral to an ENT/audiologist. By this time, I had quit driving and using stairs. I'm 57 and was otherwise healthy before all this but my husband had to start chauffeuring me around (to work, to dr appts, etc). I could barely walk and began using a cane, but the cane really didn't help because it took additional coordination to use it, which I did not have. I even tried a walker, but again it made me weaker to use the energy to move the walker & it really didn't work well with my uncoordination. It got so bad, there were a couple of times when my feet just wouldn't move. I was so scared, I started crying! I thought I must have a brain tumor that they hadn't yet discovered.

The ENT said my hearing and ear pressure tests were perfectly normal, but I needed balance testing and a referral to a neurologist. It took forever to get in to a neurologist.

When I finally saw a neurologist, she told me my ferritin was low which can cause "all sorts of neurological issues". So, she had me start iron which I take every other day. She also gave me a nerve block shot in the back of my head for my daily "migraines" which she said were actually occipital neuralgia. This neurologist said my MRI showed I'd had a stroke but not in an area that would explain my vertigo, wide-based, slow, ataxic gait, or incoordination. The iron began helping and my vertigo finally began to be more episodic (3-4 bad days followed by 3-4 good days at a time).

I was in PT for 3 mos, until I was no longer improving. I saw another neurologist who had me do another MRI. She said the 2nd MRI didn't show that same spot that had been determined to be a stroke, so I had definitely not had a stroke. She believed my inability to eat any food or keep even vitamins down for nearly 2 weeks with covid had caused my thiamin level to drop too low, causing Wernicke's encephalopathy which can leave a person with permanent brain damage. However, that didn't explain the fact that my vertigo, tremors, headaches, uncoordination, fatigue, etc were now coming & going. It was no longer constant. My neurologist admitted that brain damage wouldn't come & go like that.

We did all sorts of tests (EKG, EEG, 3-day heart monitor, 5-day in-home EEG with video monitoring 24/7, EMG nerve conduction study, lumbar puncture, blood work). Nothing really showed up.

But I kept getting various infections & fevers after covid (diverticulitis, sinus infections, tooth infections). My Immunoglobulin M showed up as low and I read that could cause me to keep getting random infections. AND I got covid AGAIN! So my PCP & my neurologist both suggested I see an immunologist.

The immunologist/allergist did more for me in the 10-minute telemed appt than all the other specialists I'd seen the entire 12 mos prior! I read some of my MRI results to him, which talked about moderate mucousal thickening in my sinuses along with two mucous retention cysts in my right sphenoid sinus and also in my ethmoid sinus. I didn't know it yet, BUT MY SINUSES WERE CAUSING MY VERTIGO & OTHER SYMPTOMS!

My immunologist has me on a sinus regimen that has helped me get back to almost normal now!

Since you had a lot of sinus issues with your covid, perhaps you should see an immunologist/allergist, too? Maybe that's causing your issues.

In the meantime, you can start a sinus regimen with OTC mefs and see if they help. They won't hurt you anyway.

Each morning, I use a NeilMed sinus rinse (aka "netti pot"). Then, I use a prescription nasal spray (Azelistine/Asteline). After work, I use 2 sprays in each nostril of OTC fluticasone (Flonase). At bedtime, I use my Azelistine nasal spray again and take 2 pills: 1 OTC cetirizine (Zyrtec) and 1 Rx montelukast (Singulair).

Good luck, dear. I pray that your anxiety will be decreased and that some of these suggestions may help you.

Jump to this post

I had the same horrible vertigo sxs years ago, before the pandemic and eventually became disabling. I'm sorry you are experiencing this. I went to Mayo and was diagnosed with Vertiginous Migraines (even though I did not have headaches but did have migraines as a teen). Afterwards, my home neurologist at Jeff U Hosp started me on low dose Topamax. It was a miracle drug! After months and endless doctors/tests, my sxs were easily managed.

Now, after recently being diagnosed w/ severe COVID, I am now having the same sxs and I have never stopped my Topamax. I am still COVID positive so I am hoping the sxs will settle down once COVID clears. I am also having other neuro sxs. But I will say anytime, my body gets stressed, the vertigo is aggravated and if I take an extra Topamax (as prescribe), it works. Might be worth asking your doctors about. Hope you get some relief!

REPLY
Please sign in or register to post a reply.