Hello all,
I am used to having 2-4 hours seizures regularly, but after I tested positive for Covid they now last 10-13 hours every single day for the last week. Has this happened to anyone else? Please tell me this won't last forever! No doctors are helping.
Thank you!
I would contact the epilepsy society as they are very knowledgeable and you have more chance speaking to them than you do a doctor these days
Hello Jofisher,
My doctor started as a neurologist, then became an epilepsy specialist, now she spends most of her time doing research about FND. She sees patients one day per month for 4 hours so she is not easily accessible. However, we called and sent messages every day for a week and she talked to me for an hour and a half! So eventually we got some answers. We need more doctors to learn about FND for sure.
I’m so sorry that COVID is making your FND worse. Have you checked out FNDCourage.org ? I’ve taken the FND courage course and now my symptoms are minimal, even with something big like being sick.
Thanks for the info Grow123! I told my neurologist about FNDCourage and she hadn't heard of it. She looked at the website while we were on the phone and she was really impressed!
Wow - it seems strange that a FND specialist/researcher hadn't heard of FNDCourage but thanks to you, she has now. I hope you got the answers you need and have a good treatment plan in place. Hats of to you for persevering until you could talk to her, that can't have been easy, under the circumstances.
What are your seizures like? I have left sided intense muscle spasms at times that can last hours. I dont loose consciousness but cant speak during and have severe photophobia. I don't refer to it as seizures but it probably is of sorts. Mine started straight after vaccine and lasted hours, settled with a drug called procyclidine that they gave me IV. I've had them again intermittently since, worsened after having covid for the 2nd time for a bit but gradually getting shorter and less severe (over 2 years now). They lasted hours and hours before and only thing that stopped it was procyclidine. Not sure if it's the same thing you're having, but I'm sorry you are dealing with this and I hope things get better for you. Mine are definitely much better now.
My seizures are weird, no two are the same. Yesterday it impacted my speech and balance for 5 hours. I felt like I had too much caffeine but I didn't have any. Other times I can't stop moving. Sometimes I can't move at all, or talk or open my eyes. I make a variety of repetitive movements. Once I stopped breathing repeatedly for an hour and a half. Once the left side of my face drooped and I drooled and couldn't move. Sometimes all my limbs flail, my head rolls side to side with my tongue out. I walk like I have cerebral palsy sometimes. I choke on my saliva and when I drink water sometimes. I've never lost consciousness, even when I can't talk or open my eyes, I can still hear and remember everything. I get very sensitive to sound and light and touch. Every day it's a roll of the dice when I wake up. I have no idea if I will be able to control my body or not. Once I got over Covid the seizures got shorter. I'm glad the procyclidine helped you. Who gave it to you, a neurologist or primary care provider or someone else?
my seizures got worse during and after COVID too. They became completely unpredictable, were hours off and on every day though out the day. It felt like i was seizing all day because in between seizures I was still in an aura state and confused. Speech and motor skills coming and going, falling into walls the whole bit. Extreme muscle weakness that has lasted. You are not alone in worsening FND and neurological struggle after COVID. My Nurologist put me on kolonopin and Remeron. My physiatrist added gabapintin. 4 months later I’m having seizures but not the long all day ones. As hard as it is, I think time is the main answer. If you feel any fear, I think it helps to work on trusting you will be ok. You are surviving a serious struggle, so you must be extremely strong. And each seizure has an end.
Thank you, I am hopeful!
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