Is long-term seizure freedom possible without lifelong medication?

First, happy 21! It’s a milestone in life, and despite the condition I wish for the best for you.

My epilepsy, like yours, is drug resistant (refractory). Operation is not an option, since it’s multifocal. Life for me had certainly changed, as even loved ones won’t understand what we, with epilepsy, are now going through. I can’t drive anymore. Travel the globe alot less. Spend less quality time with my family because I feel tired most of the time. I skipped weddings of my closed friends, only giving them my best wishes via WhatsApp..

Your loved ones, and you, must understand medication doesn’t cure epilepsy. It merely controls the symptoms. And for some, happily the medications work out for them. Unfortunately also for many, they don’t. I’m an example. I added and took away medications after reviews with my neurologist over past almost 10 years. Finding one formula which works for you can be as good as striking a lottery.

Do discuss all options open for you with your neurologist. Your scenario may not be as bad as you feared and the treatments you named can be feasible.

Take care! Having epilepsy doesn’t mean you have the excuse not to show concern for your loved ones, laugh with them. It’s finding another way to live your life in a world which is not meant and built for ones like us. It’s like being in a left hander living in a world built for and by right handers. Trust me, you won’t know the frustrations a left handed person face.

I hope my sharing helps and may your condition be better and better.

Cheers,
Louis

I started like you mid-life with Tonic Clonic but neuro, after some different ASM's tries, eventually have been under control with 2 meds. This has kept me to 2 or 3 focal type seizures per year as of about 15 years ago. I don't drive and there was one time frame of 18 months having no seizures. My point being from the above, is that it is possible to limit your seizures and the type you occur substantially if you have the right neuro and ASM'a. Totally free? Only your neuro can answer that. I know how you're feeling and I wish you the best. Note one ASM that was prescribed was Topomax. It never helped me personally, but it caused me to lose 30 lbs of weight, not that I needed it. My recommendation is be careful with that one.

@royanthony - since medicine (and the world) are so full of acronyms, wanted to be certain of what you meant by ASMs? Anti-seizure medications? Thanks for clarifying so we can all be on the same page.

I appreciate your question. It couldn't have come quick enough. I'm in the process presently writing our District congressman for help on costs of seizure medicatications. I saw the word ASM and thought it was the same thing as Anti-epilepsy Medication (AED). Perhaps I'm wrong on both. Please educate me ! I want it right for my letter. This congressman is an actual physician, as well.

This is my experience. Cranitomy done may 2014 to remove abcess left temporal lobe from bacterial meningitis of my brain. Seizure risk since then. I have been seizure free all this time. I am legally licensed to drive. Over time under medical supervision I tapered off klonopin. I took topiramate and dose lowered from 400mg daily to 75mg daily. Now I only take lamotrigine 100mg ER daily. Once that dose was 200mg daily IR. All this done under medical supervision compliance with driving laws when this occurs. My EEG shows a breach rhythm which is non epileptic but not normal. It is a skull defect from the surgery. Mini plates and screws are in my left temporal. I do not know how to find it but there are medical- neurological algorithms that predict future seizure risks when AED is removed. I wish I had a better answer for you. Life is a gift

@kb2014
I have been told I need a LTL due to sclerosis from bacterial meningitis when I was 10 months old; I’m much older now and have been having seizures for years. Do you mind sharing more with me about your surgery ..ie surgeon, hospital, recovery? I’m so scared. So glad you are doing well.

@csue1 It was catastrophic illness. I was septic in multi organ failure on a vent in a medically induced coma. Had dialysis. I experienced cardiopulmonary arrest so a rapid response team was called to revive me. I am a retired nurse. Was RN..I lost all my memory all my medical kmowledge ability to talk walk..I was hospitalized for 30 days then entered nursing home in wheel chair. 3 weeks later I walked out with a cane to independent living. My bacterial meningitis was caused by chronic sinusitis. I have learned to talk walk again. I drive legally. I relearhec medical knowledge plus new research about neuroscience neuroplasticity. I have ptsd from this..I remarried moved out of my life long home state to NM. I can say now this was a life changing event that was needed..
.

@kb2014 I was hospitalized at KU Medical Center. I believe the neurosurgeon was a Dr Chamoud. My ENT Dr Fonald Beam came into the OR right after the neurosurgery was complete to do sinus surgery. I had 5 years of treatment by allergist- immunologist for allergies decreased immune systen..I use neilmed sinus rinse 2-3 times daily with small amount white vinegar. For 12 years..I had trauma recovery domestic violence treatment medical care. Many medications I was on after discharge from nursing home were discontinued under medical supervision

@yaelr
Hi Yael,
Welcome to our group here at Mayo Clinic Connect, and happy belated birthday! And thank you for sharing your journey — I know how hard those first years of treatment can be.
Like you and @louissc, my epilepsy is refractory — temporal lobe epilepsy with mesial sclerosis in my left hippocampus, and I experience focal seizures (auras and complex partial seizures) as well as tonic-clonic ones. So I understand your struggle well; I went through that for several years myself. Thankfully, today my seizures are much better controlled through Epidiolex combined with Keppra, along with lifestyle changes and learning to identify and manage my seizure triggers.
To your question: from what I've learned along my own journey, a true "cure" for epilepsy in adults is still rare, and most people — even after surgery — continue on some form of anti-seizure medication. That said, many people do reach seizure freedom or a significant reduction in seizures through the right combination of treatments, whether that's medication, dietary therapy, a trigger-management approach, surgery, or devices like VNS or RNS.
From your post, it sounds like you may also have temporal lobe epilepsy — is that right? Beyond the medications you've already tried, has your doctor discussed Epidiolex (pure CBD), any dietary approaches, or a seizure-trigger management program with you?
I hope you find lots of support here. You're not walking this alone.
Chris

@kb2014
Sounds like an unbelievable, amazing recovery that definitely would bring life changing into the situation. I am very happy for you that you have done so well. I also am a retired RN. Would like to talk more to you about this sometime if you are available and find it comfortable to do so. I will keep you in my prayers that your PTSD get better.
Thanks for responding.
Let me know if any further chats are possible.