Hi @jaspal
What Jake (@jakedduck1) has shared is true, unfortunately. All AEDs have potential side effects. Some people can tolerate them better, others not.
As it is known, 1/3 of people with epilepsy have refractory epilepsy or drug-resistant epilepsy. Here is a link with more information on that: https://www.epilepsy.com/treatment/medicines/drug-resistant-epilepsy
Has your doctor considered this possibility in your situation? If I may ask, what kind of epilepsy do you have? I ask that because there are certain types of epilepsy with a higher refractory percentage, like the temporal lobe, especially the mesial temporal lobe epilepsy (with sclerosis on one part of the temporal lobe).
I am one of those with refractory epilepsy, having mesial temporal lobe epilepsy. I have tried 5 AEDs (including extended release) and got worse, either in terms of seizures or hard side effects. I have so with the help of one epileptologist stopped with AEDs, switching to medical cannabis (pure CBD) in 2021. It did not control 100% of my seizures, but then with the help of iets, trigger management, exercising, and yoga, I have reduced them much. As Jake has well mentioned, just by taking gluten out of my diet (January 2022), I have reduced my seizures by 60%, having an average of 2 or 3 partial seizures per month. Gluten causes gut inflammation to every person, to some more, to others less. Here is a link explaining more about that: https://drperlmutter.com/epilepsy-gluten-sensitivity/
Based on these good results, I have since then been working on a lifestyle change, including a healthy diet (since last November I have been on an anti-inflammatory diet with low carb and sugar and it seems to be helpful), lots of exercising (Pilates and brisk walk) and yoga (I practice hatha yoga and also yoga nidra), trigger management and supplementation (Vitamins B, Omega 3, CoQ10, etc. )
Lifestyle change requires some effort. To be successful at those changes and maintain them, one has to start slowly, changing one thing at a time. To be more clear on what I am trying to express here, earlier this year I went to a nutritionist to give me support on my diet and supplements and she has put me on a very rigid diet, changing too many things at the same time and I could not keep it. It is also important to make one change at a time in your lifestyle so that you know the contribution of each change in your seizures. Anxious to reduce even more my seizures, I have made more than one change at a time and now I do not know what has been helping me in my seizure reduction. It was a mistake!
I hope to have helped you a bit.
Wishing you and all here a nice weekend!
Take care!
Chris (@santosha)