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.

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.

REPLY
@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 forgot thisbotherbpart no one is talking about. This change in metabolism also makes it sobwe can't break down fats well, so we don't have the building blocks for steroids or hormones. Enter menstrual dysregulayion.

My nervous system swings and pots symptoms cycle with my menstrual cycle. Which i had lost at first. I had to go on bcp to get it back.

REPLY
@robinholly

Hi @colleenyoung, Thanks for all the connection to the other helpful threads. I have spent some time reading through them and seeing many similar stories as mine and some new ideas for help.
I have not been to a “post-COVID recovery clinic”yet, but m getting lots of support from my primary dr. One of the hospitals in my area offers a long haul recovery clinic, but it is really a pulmonologist who is seeing folks then trying to connect them with other doctors in their system.
I bumping up against not finding a local neurologist who is supportive and wanting to seek out what might be going on. The neurologist I have seen have told me that they just don’t know and to give it time no things should get better. I do have an virtual appointment with the Neuro COVID Clinic at Northwestern Hospital next month. It took 8 months to get this appointment, so I am looking forward to talking with the drs there.

Jump to this post

I am having the same issue. I got the Moderna vaccine. All three with the advice of my pcp. My first vaccine was in 2021. I have tremors pain in my ears now. Plus everything you said and high blood pressure now. I have had blood done and mri. Been tested for neuropathy. The answers I get are you are a long hauler but nothing is ever written down. Now I’m going in February to see a cardiologist. This is just costing an arm and a leg! I truly believe it’s the vaccine. I don’t know where or what to do anymore. It’s scary and I wish there was just even an answer. Please if anyone can guide us to an answer. It’s going into 2023 and we need answers. I don’t feel good no more bc of this and I would love to just feel like myself again!

REPLY

https://vaers.hhs.gov I called a told the lady my symptoms. It has been documented please do the same if you’re having these issues contact Vaers. They are taking this serious. I hope this helps you.

REPLY
@bstaff

I am having the same issue. I got the Moderna vaccine. All three with the advice of my pcp. My first vaccine was in 2021. I have tremors pain in my ears now. Plus everything you said and high blood pressure now. I have had blood done and mri. Been tested for neuropathy. The answers I get are you are a long hauler but nothing is ever written down. Now I’m going in February to see a cardiologist. This is just costing an arm and a leg! I truly believe it’s the vaccine. I don’t know where or what to do anymore. It’s scary and I wish there was just even an answer. Please if anyone can guide us to an answer. It’s going into 2023 and we need answers. I don’t feel good no more bc of this and I would love to just feel like myself again!

Jump to this post

REPLY
@bstaff

https://vaers.hhs.gov I called a told the lady my symptoms. It has been documented please do the same if you’re having these issues contact Vaers. They are taking this serious. I hope this helps you.

Jump to this post

My husband had Covid in 2021 and was hospitalized twice. He has been to neurologists and neuropsychologists and they both agree that he should go into Mayo. We have our last meeting on 1-27-23. Hopefully, we will be able to get in. Thanks

REPLY
@bstaff

I am having the same issue. I got the Moderna vaccine. All three with the advice of my pcp. My first vaccine was in 2021. I have tremors pain in my ears now. Plus everything you said and high blood pressure now. I have had blood done and mri. Been tested for neuropathy. The answers I get are you are a long hauler but nothing is ever written down. Now I’m going in February to see a cardiologist. This is just costing an arm and a leg! I truly believe it’s the vaccine. I don’t know where or what to do anymore. It’s scary and I wish there was just even an answer. Please if anyone can guide us to an answer. It’s going into 2023 and we need answers. I don’t feel good no more bc of this and I would love to just feel like myself again!

Jump to this post

My husband also had Covid in 2021. He had the Moderna vaccine and has had neurological problems since then.

REPLY
@andipandi1223

My husband also had Covid in 2021. He had the Moderna vaccine and has had neurological problems since then.

Jump to this post

I have had test after test and nothing. They can’t find anything. Everything is in spec. I know I’m tired of vibrating all the time or being rushed in the hospital bc of tremors. Blood pressure issues. Sharp jabs, burning sensations shooting in my eyes. Muscle spasms. It’s horrible. Please how did your husband got too if you guys got answers. I will travel to get help. Has he gotten any treatment that’s helping? Also bad anxiety problems now. It’s just horrible.

REPLY

I am not sure what I have to do to be able to share a link. I have tried sharing this before. Newly registered members cannot post links apparently. But there is a paper at iospress journal of Parkinsons' disease about the third wave of COVID being Parkinsonism.

REPLY

I have VERY similar symptoms and I have had varying degrees of success with Stellate ganglion block.

REPLY
Please sign in or register to post a reply.