Breakthrough seizures after 16 yrs

@lynette1975
I certainly can understand your reluctance to have surgery. Sometimes it’s very successful occasionally not at all or seizures may increase, decrease change in severity or the type of seizure my change. Doctors suggested I have surgery numerous times but I always refused because my seizures were intractable, frequent and severe and my chances for becoming seizure free were about 50/50 at best, not worth the risks in my opinion or my parents. One thing in your favor is that TLE is a common Epilepsy surgery. Although i’m not sure if your seizures are intractable or how long you’ve had seizures but if it were me and my seizures were on controllable with medication and I had a history of meningitis I’d be very leery of becoming seizure free.
I’d be sure to ask your doctor a lot of questions about the function of the temporal lobe and specifically about the hippocampus if they’re planning on resecting that as well. There have been some studies that suggest if a patient is taking two medications and a third or more is added there’s only a 5% chance that that additional drugs will be effective. Epilepsy is an extremely individualized condition and I am very confident the researchers didn’t try every imaginable combination and dosage of every medication available or on every type epilepsy, so I don’t know how they came up with that conclusion but I definitely don’t agree.
You’ve got a lot to think about and I wishing you all the best,
Jake

@lynette1975

I have had both petite mal (complex partial absent) and grand mal (tonic clonic) seizures for 58 years. I had a grand mal when I was 16 and the next was when I was 54. Like you a long time between seizures. I have had less than 10 total grand mal. However, I live with petite mal absent seizures or "twitches" is what I call them. They last about as long as it takes to flip a light switch from on to off and back again. It is hard to say how many of those I average a day, maybe 5.

I have just joined this site and became aware of epilepsy specialists and epilepsy centers. I have a level 4 center within a couple of hours of me. I have been on medicine of one kind or another from age 7. Generally not combinations though. I too have the lorazepam in case the petite mals lead to something bigger. All of it seems to work for awhile (stops the petite mal) and then I start having them again. A term I have heard here is medicine resistant epilepsy.

I am thinking about calling the center and asking for an appointment. I am curious if the medication is doing me any good at all. Thanks for your post.

Most of the 10 grand mal (tonic clonic, I wish they would quit changing the names) I have had were breakthrough seizures due to change in medicines.

The one at age 54 was due to being put on a large dose of steroids for too long, an oops due to miscommunication between my hematologist and primary care. Both excellent doctors but an example of not enough communication and something I could have fixed by asking are you sure more than I did.

I had several emergency room visits as I was taken off of Keppra. I was coming down at prescribed levels but it wasn't slow enough for me. I was cutting 500 milligrams tablets down to 62.5 milligrams before I made it off. My provider said I would be taking dust before I got off of it. This a good example of how everyone is different. The lorazepam tablets did not stop the seizures although it did keep me from going into a full blown, lights out seizure. The emergency room injected me with the stuff (probably a higher dose) and I came out of it.

I had one and the start of another due to low sugar levels. A new trigger for me. New is within the last 10 years. About the time the steroids were introduced.

I am curious if you had the surgery as I may be headed down the same path myself. Thanks.