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Anyone Found Help/Explanation for Long Covid Neurological Symptoms?
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.
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@diverdown1 Sodium, caffeine, alcohol and nicotine is the culprit of inflammation. That's all well and good. The ENT I went to put me on a low sodium of 1200mg per day. Very hard to do. Had to figure and measure. Problem with that is I lost weight I didn't need to and then my sodium levels are below normal now. Didn't make a difference for me. Don't smoke and not drinking any alcohol. I don't think anyone knows, they are just guessing. If all this is suppose to be avoided, then why can't they figure it out?? It's not the ears, it's the brain.
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1 ReactionI understand. I don't drink alcohol, smoke and have to have low salt as well. I can tell a difference for sure when I eat something really salty. I believe that it is inflammation of the brain somehow. The central nervous system. I know there is research going on. Vanderbilt is doing one for a medication called Barcinbab (I think that is the spelling) for Brain Fog. I don't know, except I am tired of all this.
@diverdown1 yes, there are a lot of clinical trials right now and there was research that definitively showed that viral reservoirs exist in many long covid patients - so now they have to determine if it’s latent virus particles/antigens that is constantly putting our immune systems in fight or flight, if that is also linked to inflammation, if the repositories have any responsibility at all, if it just flipped a switch into autoimmune conditions, if the active virus period caused too much damage, etc.
At least we are in a period now where the research seems to be more focused and promising - but I know for many of us, it can’t come soon enough.
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3 ReactionsI wake up in fight or flight sometimes. As a person in recovery, I know there is a bit of trauma in my background, but this comes out of nowhere. It is anxiety to the 100th degree OR, I am hit with malaise and fatigue. It is truly frustrating. My hope is that this virus, works its way out of me. I am going on 4 years now. Weird and frustrating. Thank you for the reply. I want to know more about the cortisol issue. If you know of any research, please send me a message or post it. I have been reading as much as I can about this since the beginning, due to the doctors not really knowing much at all.
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2 Reactions@gnana6 ocean sounds on Alexa help me. I hope it provides some relief for you.
@aae finally someone who mentions a shower sending them over the top. I recently changed my shower head to a gentler one and it is very helpful. I also use a shower chair and sit up in bed right after. I hope this helps in some way. Sending positivity and hope your way.
@bkeeter80 Same...showers or baths just drain me of energy. I have to lie in bed for about 60 minutes after.
@rarelybees2889 I have read about the research on MF/CFS and it matches my symptoms perfectly. With the slightest physical, mental or emotional exertion, I may become exhausted and get brain fog from doing something that wouldn’t bother others. If the exertion is emotional, I may also have a fight or flight reaction. Recently, while trying to “flee” an emotional encounter with my mother, my exhaustion and brain fog were so severe that my ability to remain calm and use good judgment while driving was impaired and I side-swiped a light pole. No one else was involved, and I wasn’t hurt (but my car was….) The research on MF/CFS mentioned PEM (post executional malaise), which is the hallmark physiological symptom of CFS, and it’s exactly what happens to me. Many patients report their symptoms started after having Covid, and CFS is now linked to Long Covid. I also read that recovery from an episode of PEM can take days, weeks, or take months. Again, this describes my recovery periods. It was a relief to know the cause of my symptoms after 5-1/2 years with Long Covid, and to have an explanation for my family, who endure this with me.
@vostie Me too I can hardly make it to my bed! Again, I thought it was just me!
It is our autonomic nervous system...take a look at what it manages and you will understand why simple tasks make you tired or breathless. Doc says mine is quite compromised because long covid affects our mitochondria - our energy supply.