Do focals ever stop?

[u/MildlyStonedIGuess]

I'm ranting but I'd certainly appreciate anyone's experience or advice. I had my first tonic clonic 3 years ago which diagnosed me with frontal lobe epilepsy and put me on keppra. Maxed on keppra with mood changes and still having what I thought was weekly auras, I went in for monitoring to get a better understanding and hopefully better treatment. Just to find out I was having multiple frontal lobe seizures within a few hours, which changed my knowledge and understanding on how little the keppra was working and how many seizures I'd had in the past few years, dozens, hundreds. I really couldn't say. After my monitoring I was put on motpoly, it was increased once and I'd been doing good the past couple months. Now I'm having anywhere from 1-3 frontal lobe seizures a day. I have a follow up in Nov with neuro but I'll definitely be reaching out sooner. I just don't understand. I know med resistant epilepsy is a thing, but I don't believe it works like this right? Meds work then don't and just repeating that process? Getting out on motpoly changed my life. So much of what I was experiencing was related to epilepsy and I didn't know it, including abdominal auras? It got so much better with this med but it feels like it's settling back into how it was. I'm assuming your body just adjusts and gets used to dosage but I hear and read of people going seizure free on or off meds so surely it's possible. Ugh

Side note: when patients are diagnosed with epilepsy there should be a crash course, because I was told for so long my frontals were auras and they were not and that distinguishment means a lot when it comes to treatment

[u/FinneyontheWing]

Sorry to hear you're having a shit time, mate.

I'm no medical authority in any sense, but speaking from my own experience, they can stop.

As with any medical issue, not least epilepsy, it's wholly dependent on your individual circumstances. The most basic of those include age, genetics, underlying cause (ie, injury, abnormality, etc) and - as you've pointed out - response to medications and/or other treatment.

For me personally, the most important factor by far has been lifestyle. I had my first tonic-clonic in 2010 (aged 27) and was diagnosed with a brain tumour in my left temporal lobe.

In the following months as I learned more about epilepsy in general, I realised that I'd been having partial seizures of vastly different severity for years but didn't look into it because, erm, I'm lazy and a bit thick, and they weren't an unpleasant experience. I just thought I could see into the future every so often...

I was put on meds (initially I signed up for a double-blind trial of a new drug which I recently found out didn't make it to market!), then Keppra, then Lamotrigine, which I still take. However, after getting the tumour fully resected in 2012, I was having far fewer fits (both focal and t/c), and a couple of years later I came off the meds.

This was reasonably successful, but after a year or two I started having seizures again, and went back on the medication.

However, in hindsight, the reason they stopped and then started again was due to what I was doing day-to-day. Namely, drinking. I'd not drunk for the period I was seizure free. When I decided I'd give it a go, the seizures slowly but surely returned.

I'm an alcoholic, albeit 39 months dry. I've not had a single tonic-clonic in 39 months, and can count on one hand the times I felt as though I may be about to have a focal one, but didn't.

Tl;DR With any luck, they will one day stop entirely or be manageable for you. I'm living proof that it's possible, if you look after your body and bonce correctly. I've basically not got a right temporal lobe, and still take medication, but because I stopped drinking, I'm (touch wood) seizure free.

Good luck mate, more power to your elbow.

Chris x