Has anyone experienced balance issues after covid

Posted by marog @marog, Apr 19 3:21pm

I had Covid, body aches for 3 days. Recovered and the following week when I got out of bed my whole left side felt like a magnet pulling me back onto the bed. I then got up and had no balance, that was January 9, 2024. I was then very ill with extreme motion sickness and nausea for 48 hours. I still have no balance. No real answers from my doctor. CT scan was good, carotid artery’s healthy, blood pressure excellent. I am 71 and on no medications. PT thought maybe Vestebular Neuritis. Did therapy but no real break thru. I’m looking for answers

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I don’t know if this will help anyone. I suffered from severe loss of balance and intermittent dizziness back in 2021 when I first came down with Long Covid. Someone in another LC support group posted a couple of articles about an inflammatory process called Mast Cell Activation Syndrome which had symptoms identical to my form of LC. In the absence of any other treatment protocols, I adopted what is used to treat Mast Cell Activation Syndrome. This consisted of use of high doses if antihistamines and cutting out foods which foster inflammation. I got tremendous relief cutting out coffee ! The antihistamines included daily double dose of cetirizine and 40 mg of famotidine (which is from another class of anthistamines) and at night 100 mg of doxylamine which also helps me with the insomnia. In addition my PCP ordered physical therapy for several months. doing balance exercizes. One other treatment I turned to to reduce inflammation was from Ayurvedic medicine: an anti-inflammatory food product called Chyavanaprasha which I spread on buttered toast each morning (available on Amazon). In time I added a purified anti-inflammatory supplement from the Himalayas called Shilajit which reduced the brain fog further to where I could read again. Hope this helps !

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@margaretamada

I don’t know if this will help anyone. I suffered from severe loss of balance and intermittent dizziness back in 2021 when I first came down with Long Covid. Someone in another LC support group posted a couple of articles about an inflammatory process called Mast Cell Activation Syndrome which had symptoms identical to my form of LC. In the absence of any other treatment protocols, I adopted what is used to treat Mast Cell Activation Syndrome. This consisted of use of high doses if antihistamines and cutting out foods which foster inflammation. I got tremendous relief cutting out coffee ! The antihistamines included daily double dose of cetirizine and 40 mg of famotidine (which is from another class of anthistamines) and at night 100 mg of doxylamine which also helps me with the insomnia. In addition my PCP ordered physical therapy for several months. doing balance exercizes. One other treatment I turned to to reduce inflammation was from Ayurvedic medicine: an anti-inflammatory food product called Chyavanaprasha which I spread on buttered toast each morning (available on Amazon). In time I added a purified anti-inflammatory supplement from the Himalayas called Shilajit which reduced the brain fog further to where I could read again. Hope this helps !

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I have suffered from dizziness since having COVID in November 2020. It has not allowed me to walk well or confidently. I haven't fallen however, but sure feel like I could at any moment. I have been to a bunch of neurologists, chiropractors, acupuncturists, etc. with no improvement. In fact, I think I am getting worse slowly. Recently I have been going for gamma globulin infusions with some improvement in neuropathy, but no improvement in balance. I have done a bunch of physical therapy at several clinics. So far nothing has helped. I monitor this site to see if anyone has come up with the "magic bullet" because I am ready to get on with my life.

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It appears we are not alone with these symptoms. I so appreciate your sharing. I hold out hope for all of us to get better.

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@margaretamada

I don’t know if this will help anyone. I suffered from severe loss of balance and intermittent dizziness back in 2021 when I first came down with Long Covid. Someone in another LC support group posted a couple of articles about an inflammatory process called Mast Cell Activation Syndrome which had symptoms identical to my form of LC. In the absence of any other treatment protocols, I adopted what is used to treat Mast Cell Activation Syndrome. This consisted of use of high doses if antihistamines and cutting out foods which foster inflammation. I got tremendous relief cutting out coffee ! The antihistamines included daily double dose of cetirizine and 40 mg of famotidine (which is from another class of anthistamines) and at night 100 mg of doxylamine which also helps me with the insomnia. In addition my PCP ordered physical therapy for several months. doing balance exercizes. One other treatment I turned to to reduce inflammation was from Ayurvedic medicine: an anti-inflammatory food product called Chyavanaprasha which I spread on buttered toast each morning (available on Amazon). In time I added a purified anti-inflammatory supplement from the Himalayas called Shilajit which reduced the brain fog further to where I could read again. Hope this helps !

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Thank you so much for sharing. I pray we can all continue to uplift one another in this medical journey.

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So sorry to hear about the balance issues. If you see a connection to Covid would it be likely to be POTS? That seems to come when you search for balance and dizziness related to LC.

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In my case, I have been to multiple hospitals including TIER ONE clinics. Unfortunately, hospitals will refrain from stating any of our complaints is the result of a covid infection, even if you have positive COV blood tests like i did, if you are lucky, they will simply write it off as Vestibular neuritis or Labyrinthitis (which in itself is not a diagnosis) - it just means a "virus" attacked your inner canals. I am a sufferer and I will list my top 5 primary symptoms

- 24/7 Dizziness
- 24/7 Head Pressure
- Visual disturbances
- Severe balance & unsteadiness
- Unwell feeling (insane pulling & pulsating sensations, stinging, burning sensations etc.)

From my experience in addition to all the research i have gathered (religiously studied vestibular deficits from the encyclopedia of neurology + dozens of NLM case studies out of desperation), I have concluded the following:

1. Covid will and can inhibit a vestibular neuritis attack
2. Covid will assault your nerves beyond a traditional VN attack
3. Covid can cause simultaneous & acute bilateral damage to both sides of your semi-circular canals, this is oblivious to your go-to ENT btw
4. In addition to #3, which is mostly peripheral damage in the eyes of your ENT, Covid will present itself with Central damage, this can be observed by up-beating nystagmus that is rather random & spontaneous (in my case it showed up twice in 5 tests)
5. ENT will perform standard tests that will not properly diagnose you, because they usually do not perform tests to check all 6 canals in all the frequency ranges due to absence of proper equipment (or know-how). They will not mention this to you btw.
6. Covid will most likely not present itself in MRA, MRI or CT scans
7. Covid can and will attack either your inferior and superior nerves (or both), in my case, it was the superior
8. ENT will only diagnose you within their scope i.e BVVP, UVH, BVH, VN, VM, LAB etc. and will refer you to PT or prescribe betahistine / SSRI's etc.
9. PT exercises (VRT) are useful, but the extent of their effectiveness depends on the diagnosis in #8. This is why you find patients reporting how exercises helped along with anti-inflammatory foods while others did not see any significant improvement (they do not know their diagnosis in #8)

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I had Covid twice, my first bout was the first strain in January 2021. I was a long hauler and since then, I have had severe balance issues, all neuro tests are normal. I have had joint aches, especially on the left side of my body with numbness. I was diagnosed with neuropathy. Now, it is possible that I had some underlying issue that was exacerbated by the COVID.
I am new here, it is so comforting to see that others are going through similar situations.
The thing that really infuriates me, is that when I mention to any Doctor or Specialist aside from my family Doctor that I believe COVID caused some of these things, they are too quick to dismiss it. My family Doctor doesn't, however.
I also was vaccinated shortly after that first bout, which helped with the long haul symptoms, but sometimes I wonder if the vaccine had anything to do with some of my symptoms. I refuse any more boosters.
Hugs to all of you. I'm with each of you.

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@hypofunction

In my case, I have been to multiple hospitals including TIER ONE clinics. Unfortunately, hospitals will refrain from stating any of our complaints is the result of a covid infection, even if you have positive COV blood tests like i did, if you are lucky, they will simply write it off as Vestibular neuritis or Labyrinthitis (which in itself is not a diagnosis) - it just means a "virus" attacked your inner canals. I am a sufferer and I will list my top 5 primary symptoms

- 24/7 Dizziness
- 24/7 Head Pressure
- Visual disturbances
- Severe balance & unsteadiness
- Unwell feeling (insane pulling & pulsating sensations, stinging, burning sensations etc.)

From my experience in addition to all the research i have gathered (religiously studied vestibular deficits from the encyclopedia of neurology + dozens of NLM case studies out of desperation), I have concluded the following:

1. Covid will and can inhibit a vestibular neuritis attack
2. Covid will assault your nerves beyond a traditional VN attack
3. Covid can cause simultaneous & acute bilateral damage to both sides of your semi-circular canals, this is oblivious to your go-to ENT btw
4. In addition to #3, which is mostly peripheral damage in the eyes of your ENT, Covid will present itself with Central damage, this can be observed by up-beating nystagmus that is rather random & spontaneous (in my case it showed up twice in 5 tests)
5. ENT will perform standard tests that will not properly diagnose you, because they usually do not perform tests to check all 6 canals in all the frequency ranges due to absence of proper equipment (or know-how). They will not mention this to you btw.
6. Covid will most likely not present itself in MRA, MRI or CT scans
7. Covid can and will attack either your inferior and superior nerves (or both), in my case, it was the superior
8. ENT will only diagnose you within their scope i.e BVVP, UVH, BVH, VN, VM, LAB etc. and will refer you to PT or prescribe betahistine / SSRI's etc.
9. PT exercises (VRT) are useful, but the extent of their effectiveness depends on the diagnosis in #8. This is why you find patients reporting how exercises helped along with anti-inflammatory foods while others did not see any significant improvement (they do not know their diagnosis in #8)

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All of what you describe I go through daily. Thank you so much for doing that research. I am so afraid to look anything up.
The dizziness and unwell feeling and the pulling and burning feeling have only presented themselves since my first bout. I cannot understand why the neurologist can not make the connection. They stop short at "well maybe because you were inactive due to the COVID". No, sorry, I've had flus where I was inactive just as long and it never resulted in nerve damage or the inability to balance or severe heat and cold intolerance.

Thank you again. Your post is so very helpful.

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