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How are the super long-haulers doing 3 to 4 years out?
Post-COVID Recovery & COVID-19 | Last Active: Jul 5 2:41pm | Replies (41)Comment receiving replies
For me, Long Covid has been cyclical with ups and downs. My initial symptoms in early 2020 were amnesia, fatigue, and nerve pain. About a year after Covid, I felt great, had a ton of energy, started walking every day, and started losing weight. Two years after Covid, I had lost 50 lbs, and realized I had no appetite; I looked great, but I was disappearing in front of my eyes, and felt like I was dying. Three years after Covid I had a Tonic Clonic seizure and was diagnosed with Epilepsy. The Epilepsy diagnosis has re-framed one of my initial Covid symptoms in 2020 - what I described to doctors as "Amnesia" was likely a Focal Seizure. I'm now into my 4th year post Covid. I feel good, and have my appetite back. Epilepsy is now my #1 concern. The seizure meds are strong meds, and are not yet fully controlling the seizures. After the Epilepsy diagnosis, I don't think Long Covid can throw anything else at me, but never say never with Covid.
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I am so sorry to hear that Epilepsy has been one of your long-COVID consequences. That sounds really frustrating and scary. I am glad you were able to arrive at a diagnosis and start treatment. I hope your care team can keep working on finding ways to get your system more in balance and manage your condition. COVID sure has a whole slew of odd and challenging symptoms that come with it. Keep hanging in there, and give yourself credit for all that you have overcome so far in your long-COVID journey!
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This is somewhat my mantra, but consider being tested for celiac and keeping a food log to see if you are sensitive to any foods/chemicals. Turns out that my neurological symptoms are mostly triggered by gluten. I might have avoided 50 years of seizure meds if I had known that back then. Still on meds, but only half dose/2x day of Keppra (better than phenytoin). My celiac was triggered by H1N1 14 years ago, but I have been gluten intolerant for 50 years. Covid and LC from March 2023 didn't worsen my autoimmune diseases, but did hit my cardiovascular system and slow me down for 8 months (gone now).