How are the super long-haulers doing 3 to 4 years out?

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.

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).

I’m so sorry that you’re suffering this long due to Covid. I had a mild case of Covid or so I thought, in December of 2022. I lost my taste and smell on day 2 of the virus and still to this day, June 6, 2024, don’t have it back. You mentioned Stellate Ganglion Block Injections, I’ve had 3. 2 injections on the right side of my neck and 1 on the left. I will be going in June 13th for a 4th on my left side. I will be asking my doctor about a Platelett Rich Plasma injection using my own blood. It’s a process where your own blood is somehow cleaned and then reinjected back into you. I am at a stand still and at this point will try just about anything. I currently have only salty, sweet and sour tastes on my tongue when I eat anything. No flavors of any kind. May I ask you how many Stellate Ganglion Block Injections have you had. I wish you well on your health journey.

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!

I am sorry to hear your loss of taste and smell has lasted so long! That has to be so frustrating. I hope you find a therapy that helps soon. I know the feeling of wanting to try anything to get better; the Platelett Rich Plasma injection sounds interesting and worth a try if you can get it.

I had two Stellate Ganglion Blocks. At this point I don't plan to get more (and I was the one who wanted it, so my provider isn't giving me a recommendation on how many to get). It helped immediately after the first one with lung symptoms...I could take a deep breath for the first time in 3 years, to the point I had to spend a couple weeks getting accustomed to breathing the proper way again after the tightness in my chest lifted after so long. It did not seem to help with other symptoms, like fatigue, periodic crashing, weak or over sensitive immune system, some heart rate issues. I never lost taste and smell so can't speak to that part. Thank you for your well wishes; I wish you well on your path to healing too!