Anyone Found Help/Explanation for Long Covid Neurological Symptoms?

Posted by robinholly @robinholly, Feb 13, 2022

Has anyone found some help and explanation for their neurological symptoms? Symptoms like tremors, dizziness, difficulty walking, tingling in legs and back, muscles twitches in legs, hand tremors, cognitive dysfunction, ringing in ears, pain and burning in toes and feet. I have these symptoms and more. I have been through MRI of brain and full spine, peripheral nerve testing, muscle function and short fiber nerve tests all in the normal range despite the symptoms. I have been on 900mg gabapentin daily with little improvement, then things got much worse after getting the booster last month. Would love to hear from some that have found help and explanation.

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

@amandagoodhart

The lining of out blood vessels is damaged. This does 2 things:

1. This lining is a messenger to our autonomic (automatic) nervous system that controls automatic things like heartbeats, blood pressure, breathing rate, digestion, etc. This damage sends mixed signals and exaggerated signals. and we get all kinds of neurological dysregulation. This is the POTS and dysautonomia.

2. The lining makes microclots to heal its damage. These are too small to see on conventional testing. So blood flows through the larger pipes but not the tiny ones that feed our cells. Think of not a clog but like trying to push chunky soup (blood) through a filter (microclots). Blood cant reach the cells well. Our cells starve for oxygen. They switch metabolism to spare as much oxygen as they can so they don't die. This makes less ATP which is the fuel that keeps our cells (and us alive). Long Haulers are making 1/8th or 1/16th the amount of ATP. So our body has no fuel. This is the mitochondrial disease side.

While this switch in metabolism helps us to live off less oxygen, it makes more toxic byproducts. These cause inflammation. Inflammation means worse blood flow. And the spiral continues downward. With less blood flow, there is less flushing out of these toxins from the cells. So they get sicker. Some die.

This process inside our immune cells sends them from calming mode to attack mode. Making everything worse. We get allergic symptoms from everything, foods, scents, temperature changes. This is the MCAS side.

This process inside our brain makes it think that gravity is the problem (which is a small part). So the brain makes us fall, pass out, lie down to sleep... anything it can do to get us to relieve gravity so that blood can flow back up.

There are parts of the body that are more dependent on oxygen than others. The brain, the heart, the lungs, the bone marrow, the inner ear.... all symptom sites. These cells just don't cope as well as others without oxygen. Brain is doubly affected because it also depends on only glucose for metabolism. It burns sugar. It isn't good at burning fat or protein like other cells will if they have to. So brain fog is often the first and most persistent symptom.

Now if we can just figure out why the blood vessel lining (endothelium) damage occurred to such an extent and how to heal it. The virus does have lots of receptors in the endothelium, so it may be direct viral damage.

So different research parts are looking at how to bust these stubborn little clots, which are resistant to being dissolved by our natural processes, and even our current meds. So they stop scratching the endothelium. So the sutomatic nervous system can chill out. And so our cells can be flushed, fed, and grow back.

It won't let me post citations cuz I'm new. But check out Gez Medinger on Youtube where he interviews Ade Wentzel. And then his microclot series.

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Thank you for your excellent explanation of how these symptoms are interrelated. I am a retired health care professional with brain fog, fatigue, lightheadedness for the past 2 months. I feel as if I aged 30 years overnight and it has impaired my level of functioning. My brain is clear right now (lasts about 2 hours) and I so appreciate knowing how this all ties together.

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There is a new Nature Review article available that is a great resource of where we are in general with understanding the plethora of symptoms that long covid produces. It is a technical review but I believe many here will appreciate the indepth look and the call for more research so that we can develop effective treatments.
https://rdcu.be/c3oOx

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Hi Robin Holly,
My symptoms have not been as severe or pervasive as your symptoms. My most prominent issue is brain fog. It definitely interferes with my daily functioning. I am not driving. I have a lot of trouble with basic household chores. I have lost sense of time, and have challenges with paying bills, banking and problem-solving. I live alone with no nearby family.

A therapist who works in a Covid clinic has recommended Speech Therapy for an eval and cognitive retraining. I don’t have a speech problem that I know of.

I have researched local neurologists, but I cannot identify one that I would use. (I am a retired health care professional and know several of the neurologist in my area.

My latest find, is a Neuropsychologist who specializes in evaluation and rehab. A family member used him in the past & I was very impressed. And…he accepts Medicare.

I am mentally clear for about 2 hours / day. During that time I have watched some You Tube videos about Covid brain fog. I stick with qualified professional who can make suggestions about resources in the internet. I have also added some brain stimulating activities into my daily life, easy Crossword Puzzles and Suduko (new to me)
I don’t know if any of those suggestions fit your situation. I wish you the best in your recovery. One coping mechanism that I have learned over the past decades is, “never give up hope.”

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@fuzzy64

Thank you for your excellent explanation of how these symptoms are interrelated. I am a retired health care professional with brain fog, fatigue, lightheadedness for the past 2 months. I feel as if I aged 30 years overnight and it has impaired my level of functioning. My brain is clear right now (lasts about 2 hours) and I so appreciate knowing how this all ties together.

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Could your symptoms be vaccine related?

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@amandagoodhart

The lining of out blood vessels is damaged. This does 2 things:

1. This lining is a messenger to our autonomic (automatic) nervous system that controls automatic things like heartbeats, blood pressure, breathing rate, digestion, etc. This damage sends mixed signals and exaggerated signals. and we get all kinds of neurological dysregulation. This is the POTS and dysautonomia.

2. The lining makes microclots to heal its damage. These are too small to see on conventional testing. So blood flows through the larger pipes but not the tiny ones that feed our cells. Think of not a clog but like trying to push chunky soup (blood) through a filter (microclots). Blood cant reach the cells well. Our cells starve for oxygen. They switch metabolism to spare as much oxygen as they can so they don't die. This makes less ATP which is the fuel that keeps our cells (and us alive). Long Haulers are making 1/8th or 1/16th the amount of ATP. So our body has no fuel. This is the mitochondrial disease side.

While this switch in metabolism helps us to live off less oxygen, it makes more toxic byproducts. These cause inflammation. Inflammation means worse blood flow. And the spiral continues downward. With less blood flow, there is less flushing out of these toxins from the cells. So they get sicker. Some die.

This process inside our immune cells sends them from calming mode to attack mode. Making everything worse. We get allergic symptoms from everything, foods, scents, temperature changes. This is the MCAS side.

This process inside our brain makes it think that gravity is the problem (which is a small part). So the brain makes us fall, pass out, lie down to sleep... anything it can do to get us to relieve gravity so that blood can flow back up.

There are parts of the body that are more dependent on oxygen than others. The brain, the heart, the lungs, the bone marrow, the inner ear.... all symptom sites. These cells just don't cope as well as others without oxygen. Brain is doubly affected because it also depends on only glucose for metabolism. It burns sugar. It isn't good at burning fat or protein like other cells will if they have to. So brain fog is often the first and most persistent symptom.

Now if we can just figure out why the blood vessel lining (endothelium) damage occurred to such an extent and how to heal it. The virus does have lots of receptors in the endothelium, so it may be direct viral damage.

So different research parts are looking at how to bust these stubborn little clots, which are resistant to being dissolved by our natural processes, and even our current meds. So they stop scratching the endothelium. So the sutomatic nervous system can chill out. And so our cells can be flushed, fed, and grow back.

It won't let me post citations cuz I'm new. But check out Gez Medinger on Youtube where he interviews Ade Wentzel. And then his microclot series.

Jump to this post

I am so grateful you have been so informed and able to communicate all this helpful information in a way that most should understand and use to find resouces to help them. I too am a former healthcare professional who has tried to get assistance and its obvious most healthcare systems are ill equipped or ill informed to render individual care to post covid patients. My symptoms and life challenges mirror what you and so many are experiencing and I hope I may ask suggestion of you sharing this explanation with nih, medical jounals, Sutter Health, Mercy/Dignity, UCD, Kaiser, Adventist, any medical sources in your area that can disseminate it throughout all possible sources to enable all healthcare providers to be informed and render helpful treatment. Again much gratitude to you!

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@colleenyoung

Hi @robinholly, welcome. Long COVID sure is a puzzle with no clear answers, yet. Here are a few related discussions that you may be interested in:
- Do other long haulers suffer with brain changes? Seen any improvement? https://connect.mayoclinic.org/discussion/brain-changes-from-long-haulers/
- Any tips to help recovery for a COVID Long-Hauler? https://connect.mayoclinic.org/discussion/long-hauler/
- Neuropathy post-Covid infection: Is there treatment that helps? https://connect.mayoclinic.org/discussion/neuropathy-in-feet-post-covid/
- Long COVID: What helps other than rest and more rest? https://connect.mayoclinic.org/discussion/long-covid/
- Deep Breathing & Mindfulness Class: Anyone else having success? https://connect.mayoclinic.org/discussion/deep-breathing-and-mindfulness-educational-class/

Have you been to a clinic specializing in post-COVID recovery?

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That’s very interesting. I have terrible hypersensitivity to the point where I can’t be around other people for long. Noise and light send me into a spiral of nausea and swelling. It’s obviously a neurological dysfunction. I’ve had to live a hermit-life for 2 and a half years and it’s terrible. Isolating and few people understand.

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No explanation, but I started using an over the counter vagus nerve stimulator (neuvana) and it has helped with some of the pain and hypersensitivity I’ve experienced with my longcovid.

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@fuzzy64

Hi Robin Holly,
My symptoms have not been as severe or pervasive as your symptoms. My most prominent issue is brain fog. It definitely interferes with my daily functioning. I am not driving. I have a lot of trouble with basic household chores. I have lost sense of time, and have challenges with paying bills, banking and problem-solving. I live alone with no nearby family.

A therapist who works in a Covid clinic has recommended Speech Therapy for an eval and cognitive retraining. I don’t have a speech problem that I know of.

I have researched local neurologists, but I cannot identify one that I would use. (I am a retired health care professional and know several of the neurologist in my area.

My latest find, is a Neuropsychologist who specializes in evaluation and rehab. A family member used him in the past & I was very impressed. And…he accepts Medicare.

I am mentally clear for about 2 hours / day. During that time I have watched some You Tube videos about Covid brain fog. I stick with qualified professional who can make suggestions about resources in the internet. I have also added some brain stimulating activities into my daily life, easy Crossword Puzzles and Suduko (new to me)
I don’t know if any of those suggestions fit your situation. I wish you the best in your recovery. One coping mechanism that I have learned over the past decades is, “never give up hope.”

Jump to this post

Hey there @fuzzy64 ,
Would you mind sharing the name of your neuropsychologist?
The speech therapy is for cognitive retraining to keep you on task, focused, and with problem solving. You have to find one that has worked with post COVID patients. I’m a physician and on FMLA and this is what I have learned so far.

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@ebergfeld

There is a new Nature Review article available that is a great resource of where we are in general with understanding the plethora of symptoms that long covid produces. It is a technical review but I believe many here will appreciate the indepth look and the call for more research so that we can develop effective treatments.
https://rdcu.be/c3oOx

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I would also suggest looking at the consensus statement from PM&R about cognitive impairment with PASC.
If you google it you can find the article free. The site won’t let me post a link yet.

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@millz

I would also suggest looking at the consensus statement from PM&R about cognitive impairment with PASC.
If you google it you can find the article free. The site won’t let me post a link yet.

Jump to this post

Hi @millz, I noticed that you wished to post a URL to an article with your post. You will be able to add URLs to your posts in a few days. There is a brief period where new members can't post links. We do this to deter spammers and keep the community safe. Clearly the link you wanted to post is not spam. Please allow me to post it for you.

- Multi-disciplinary collaborative consensus guidance statement on the assessment and treatment of cognitive symptoms in patients with post-acute sequelae of SARS-CoV-2 infection (PASC) https://onlinelibrary.wiley.com/doi/epdf/10.1002/pmrj.12745

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