Anyone Found Help/Explanation for Long Covid Neurological Symptoms?

Ok, I was given, over several several months two of the vax starting with
M, the the M booster on Fall of '22. I reacter to the booster and my Dr
said not to take any more of the. Ovid vax. Had covid August '22, a mild
case, then Sept '22 came down with a painful case of long covid gut
syndrome.

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Robin Holly, tremors are my thing! This coming February it will be two years that I have been dealing with and learning how to manage/compensate for my Post-COVID Long-haulers symptoms. Mine first manifested as nerve "zingers" (as one of your respondents said her daughter so aptly calls them). These ran through my brain, sometimes dissipating and sometimes settling into a vague headache. They can feel like a bug moving rapidly under my skull from one location in my brain to another, usually just feeling like it is across the surface of my brain. This is accompanied by brain fog and dyslexia-like word, print and even number-scrambling, thought-blanking, and stuttering/getting locked on repeating words while trying to talk. These symptoms eventually progressed to full body tremors which usually start very subtly with feeling an onset of head bobbing forward and back, which progresses to arms and legs trembling like someone with Parkinsons. The tremors can get so bad that I feel my legs will give out underneath me and I have to walk with a cane or hold on to furniture to steady myself. When I push things beyond this point trying to stay active my neuro-muscular symptoms turn into full-on body and brain nerve pain--like a "storm" of nerve irritation which basically shuts me down and brings me to tears. The only remedy is to lay down, unload my nervous system, and wait for everything to subside (now I try to lie down as soon as the head-bobs become noticeable to others). I enrolled in a Post-COVID Care Clinic (PCCC) in my hometown and the best thing they did for me is to have me talk to their pharmacist who helped me figure out how to get better sleep. I have trouble getting to sleep anyway because my thoughts stay so active, but the COVID virus really disrupted my ability to stay asleep even more. The PCCC pharmacist taught me how to use melatonin in conjunction with a sleep preparation routine starting two hours prior to my target time I want to fall asleep, to get an appropriate amount of sleep each night (PTSD counselors call this doing good mental/emotional "sleep hygiene"). This has really helped me start diminishing/managing my symptoms and keep them at bay; although, I have found that when I have a few nights in a row of bad sleep, and/or of really demanding activity during a given day (either physically, mentally, emotionally, or spiritually demanding--any one or a combo of these), the tremors, stuttering, and thought freezing can easily come back again. But with well managed and more consistently good sleep I have been able to, bit by bit, increase my activity levels and even exercise to the point of passing my latest Air Force physical fitness test just a few weeks ago (not a great score, but passing). It has been tricky since I don't know my new limits and I have had to push to and through them to get back up almost to my prior activity abilities. Each time I have done this I trigger the symptoms and it feels like I'm setting myself back again. But over time I have adjusted to doing this with more care and caution so that I can stop exertion and lie down for a while just as the symptoms are coming on again, and then make sure I get really good sleep the night after. This is my new normal. One more thing I will share is that I have had brain MRI's and other tests that have not really brought anything to light. Several of my siblings have auto-immune issues, so I got tested for this thinking that maybe the COVID virus triggered it in me, but my tests came back negative (which I'm still kind of skeptical of and may get retested for again). The PCCC doctor told me he thinks my symptoms are from triggering nerve and muscle inflammation caused by the virus, and even that I may now be triggering (and susceptible to having) micro seizures. I'm sorry for all those who are dealing with this, and I pray that maybe what I've shared of my own ongoing experience might bring some hope and help to others having similar symptoms as my own. God's peace, strength, healing and courage to all!
-Fr. David Meinzen (VA and Air Force Chaplain)

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Is the pccc Dr Recommending anything you should do for the inflammation?

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No, other then good sleep and healthy exercise and nutrition. After I showed improvement in managing my symptoms with better sleep patterns following the pharmacist recommendations the Dr. just said to keep doing that. He was reassuring that I could recover, and seemed to be content with the most minimally invasive ways to treat/manage my long-haulers. I was kind of disappointed that he didn't want to do more testing to find out more about what exactly was causing my particular symptom manifestations, but he did tell me to come back if things didn't keep improving or if they got worse again.

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Sunny 8 -
An important point about Covid that has not gotten as much emphasis as it should, is that Covid is virus that attacks the vascular system - basically a very dangerous condition called Vasculitis.

It is important to understand this because it provides a better perspective for seemingly unrelated symptoms.

The damage it can cause by limiting blood flow to multiple organs and body parts can show up as a cascade of new symptoms with the number and intensity of the symptoms related to the severity of the infection. Severe infections can have multiple often life changing effects, while less severe infections can have lesser consequences.

That said, your long Covid Gut Syndrome is likely an example of the Vasculitis causing gut wall damage. The list of those symptoms are very similar to the symptoms related to Celiac Disease - enough so that the CD management recommendations could help lessen the severity of your current symptoms.

Specifically, the first longterm effects of the onset of CD is a dramatic reduction in the absorption of vitamin B12 and the mineral calcium.

Why are they important? B12 aside from its nutritional effects is a very powerful anti-inflammatory and Calcium is the foundation of bones and the digestive process.

The recommendations for CD that could be helpful for long Covid sufferers are:
- Get gluten free
- reduce dairy product consumption
- limit the consumption of prepared foods (with unknown ingredients)
- adopt a meat and potatoes diet
- avoid alcohol based drinks including beer
- take B12 injections rather than orally
- if possible increase your consumption of vitamin C foods

And I would add, as a precaution,
blood tests for CD;
- HLA-DQ2 to check for the CD related gene and
- TgT test if you have been eating gluten containing foods for the last 6 months can provide evidence of active Celiac Disease.

Finally, none of suggested treatment will cure any CD you may have, but it can provide a template for how to manage your symptoms.

Chris47 -
PS - A CD sufferer for 40yrs.

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No, other then good sleep and healthy exercise and nutrition. After I showed improvement in managing my symptoms with better sleep patterns following the pharmacist recommendations the Dr. just said to keep doing that. He was reassuring that I could recover, and seemed to be content with the most minimally invasive ways to treat/manage my long-haulers. I was kind of disappointed that he didn't want to do more testing to find out more about what exactly was causing my particular symptom manifestations, but he did tell me to come back if things didn't keep improving or if they got worse again.

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GABAPENTIN GAVE ME THE VERY SYMPTOMS YOU ARE DESCRIBING PLUS A KLINGON WARRIOR PERSONALITY WHEN I AWOKE> STOP THE GABA AND GET SOMETHING ELSE>>>>

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Robin Holly, tremors are my thing! This coming February it will be two years that I have been dealing with and learning how to manage/compensate for my Post-COVID Long-haulers symptoms. Mine first manifested as nerve "zingers" (as one of your respondents said her daughter so aptly calls them). These ran through my brain, sometimes dissipating and sometimes settling into a vague headache. They can feel like a bug moving rapidly under my skull from one location in my brain to another, usually just feeling like it is across the surface of my brain. This is accompanied by brain fog and dyslexia-like word, print and even number-scrambling, thought-blanking, and stuttering/getting locked on repeating words while trying to talk. These symptoms eventually progressed to full body tremors which usually start very subtly with feeling an onset of head bobbing forward and back, which progresses to arms and legs trembling like someone with Parkinsons. The tremors can get so bad that I feel my legs will give out underneath me and I have to walk with a cane or hold on to furniture to steady myself. When I push things beyond this point trying to stay active my neuro-muscular symptoms turn into full-on body and brain nerve pain--like a "storm" of nerve irritation which basically shuts me down and brings me to tears. The only remedy is to lay down, unload my nervous system, and wait for everything to subside (now I try to lie down as soon as the head-bobs become noticeable to others). I enrolled in a Post-COVID Care Clinic (PCCC) in my hometown and the best thing they did for me is to have me talk to their pharmacist who helped me figure out how to get better sleep. I have trouble getting to sleep anyway because my thoughts stay so active, but the COVID virus really disrupted my ability to stay asleep even more. The PCCC pharmacist taught me how to use melatonin in conjunction with a sleep preparation routine starting two hours prior to my target time I want to fall asleep, to get an appropriate amount of sleep each night (PTSD counselors call this doing good mental/emotional "sleep hygiene"). This has really helped me start diminishing/managing my symptoms and keep them at bay; although, I have found that when I have a few nights in a row of bad sleep, and/or of really demanding activity during a given day (either physically, mentally, emotionally, or spiritually demanding--any one or a combo of these), the tremors, stuttering, and thought freezing can easily come back again. But with well managed and more consistently good sleep I have been able to, bit by bit, increase my activity levels and even exercise to the point of passing my latest Air Force physical fitness test just a few weeks ago (not a great score, but passing). It has been tricky since I don't know my new limits and I have had to push to and through them to get back up almost to my prior activity abilities. Each time I have done this I trigger the symptoms and it feels like I'm setting myself back again. But over time I have adjusted to doing this with more care and caution so that I can stop exertion and lie down for a while just as the symptoms are coming on again, and then make sure I get really good sleep the night after. This is my new normal. One more thing I will share is that I have had brain MRI's and other tests that have not really brought anything to light. Several of my siblings have auto-immune issues, so I got tested for this thinking that maybe the COVID virus triggered it in me, but my tests came back negative (which I'm still kind of skeptical of and may get retested for again). The PCCC doctor told me he thinks my symptoms are from triggering nerve and muscle inflammation caused by the virus, and even that I may now be triggering (and susceptible to having) micro seizures. I'm sorry for all those who are dealing with this, and I pray that maybe what I've shared of my own ongoing experience might bring some hope and help to others having similar symptoms as my own. God's peace, strength, healing and courage to all!
-Fr. David Meinzen (VA and Air Force Chaplain)

Jump to this post