Anyone Found Help/Explanation for Long Covid Neurological Symptoms?

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?

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.

Hello. My 12 year old had COVID Pneumonia in September. Since then she has what she calls “zingers”-shooting nerve pains. Some bring her to tears. She also has some internal vibrations. We have tried 2 rounds of steroids and now just starting gabapentin. I’d love to hear from others (like above) that have nerve issues.

Hi @robinholly and @vonpinnon. How frustrating this all is, especially for a 12 year old. I have no experience with COVID, but do have experience with the symptoms you've describe. All of my neurological tests were also negative and caused more confusion as to why I was experiencing this uncertainty in my body. Ultimately, I discovered that I have Central Sensitization Syndrome (CSS) and was treated at Mayo's Pain Rehabilitation Center (PRC) by Dr. Christopher Sletten.

CSS, as explained by Dr. Sletten in the following video, is an upregulation of the central nervous system which can affect a plethora of symptoms like nerve, muscle, joint and bone pain, sensory issues, tremors, vibrations, gut issues, etc... The body experiences hypersensitivity and goes into fight or flight mode. The upregulation takes place in the spinal cord and brain sending louder messages.

Find more info here:
https://youtu.be/vJNhdnSK3WQ

Many specialists, like neurologists, do not know much about CSS or symptom management beyond medications such as nerve meds.

I wanted to bring Central Sensitization in to the conversation as you continue researching and connecting with others experiences in hope that it may make some sense of the unsettledness you feel.

Please free to ask any questions you may have. I am rooting for you! Do you mind getting back to me with your thoughts on what I have presented?

GREAT VIDEO, Thank-you!

My best t your little one...Were these symptoms present during the period she was experiencing other symptoms of covid, and if after, how long? Is she being treated by a "long covid" doctor/clinic? I've heard of people with extensive nerve issues and I'm sure they'll chime in...

@vonpinnon I'm so sorry your daughter feels zingers. That really bothers me as I know how disturbing and painful it can be. How does she currently deal with and get through the nerve pain flares? Has she learned tools like breathing techniques or meditation?

@weeds You're welcome! What did you like most about
the video?

I had an internal vibration right under my sternum last night cooking dinner! I definitely pushed my limits yesterday doing too much. I immediately sat on the kitchen floor once I felt this strange feeling, but knew I would be fine since I have already had every cardiology and neurology test under the sun. Thank you for putting a name to it. I also experience severe sensory overload, sometimes I am unable to take a shower because my nervous system is overloaded from feeling the water on my skin.

One night while very sick with COVID Pnuemonia her whole badly starting having nerve pain and her hands went numb. She was sick for several weeks. Then she had mild nerve issues for about 3 months mainly in her hands and feet. Now the zingers have increased and added the internal vibrations. She’s 5 months out from having COVID. We are seeing a pediatric neurologist. However he hasn’t done any official testing like an MRI or such.