← Return to Epilepsy/Seizures after Covid
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Epilepsy & Seizures | Last Active: Jun 7 3:49am | Replies (20)
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Replies to "Hi Chris, I am coming up on the 1 year anniversary of the Tonic Clonic in..."
Hi @earlylonghauler
I am very sorry for all you have been going through. Having been at your place before, I know how challenging and difficult those experiences with medications can ben.
I understand there was a typing mistake, you meant 2023 instead of 2013, correct?
Temporal lobe epilepsy has a higher percentage of refractory epilepsy and medications are not enough to control seizures, unfortunately. I know it myself as I have temporal lobe epilepsy with sclerosis on the left side. Has your doctor checked if you have any kind of sclerosis? Having an sclerosis on the temporal lobe, increases even more the changes of refractory epilepsy.
I copy here a link from the Epilepsy Foundation with information on temporal lobe epilepsy that might be helpful to you: https://www.epilepsy.com/what-is-epilepsy/syndromes/temporal-lobe-epilepsy
I have tried Vimpat as well and from the 5 different AEDs I tried out, this was the worse one with a large quantity of side-effects (inbalance was one of them). The neurologist at that time did also not want to switch Vimpat. So, I wished him for an epileptologist. It was the best thing I did. Being treated by an epileptologist instead of a neurologist or psychiatrist as I did my first 3 years of epilepsy treatment has made a huge difference in my well-being. My epileptologist confirmed my refractory epilepsy and has put me on Epidiolex (CBD from medical cannabis). I felt much better and with very little side-effects. I still had some seizures, but much milder than while being treated with AEDs. A gluten free diet was then added to my treatment, reducing my seizures by 60%. Here is an article of Dr. David Pertlmutter about epilepsy and gluten sensitivity: https://drperlmutter.com/epilepsy-gluten-sensitivity/
I am now trying an anti-inflammatory diet and have had some positive results. But it is yet too soon to be affirmative. Let's see how it evolves.
Keep strong and walking! Wishing you all the best!!!
Chris (@santosha)