Question: Hello, I have a brain tumor which has created the problem of epilepsy. Over a few years my doctors have tried a few different pills but now I am stuck on ONFI which never seemed to help. However, I am on the highest dose (40mg/day) and I am afraid of the long term effects as well as coming off of it. My concern is because it is a benzodiazepine and it has been 4 years and a few months of use now. Would you recommend I push for my doctor to begin reducing my dosage and what symptoms would be of high concern as I am currently on the medication?

My tumor was partially removed in 2012 and was immediately followed by radiation treatment and chemotherapy. During that time and continuously I experienced seizures, both partial and grand mal and many feelings of auras. I went through several medications at my hospital (Capital Health in NJ) at that time including Trileptal which I am on today, Keppra which worked but the doctor said it was more of a temporary drug, Lyrica which did nothing, Vimpat, Topamax (overnight trial 500mg which put me in a very volatile state) and then finally Onfi which combined with the Trileptal. The Onfi was increased quickly to 40 mg as it did not have any benefits, meaning the seizure frequency did not go down.

Due to my doctors being changed up (new building slightly mismanaged) and ignorance of many aspects, I decided to go to XXXXXXX Kettering. The first thing noted was my Sodium was extremely low due to the Trileptal. Although when my sodium level is high the Trileptal is very effective, I do not like taking 3 x 1 mg tablets of salt to go with it. We tried Lamictal and it worked but it kept me up, at the lowest effective level of 400mg I could not sleep for 3 days so it was dropped to 150 mg. So at that point I was relying on Trileptal and my doctor at XXXXXXX did not want to start taking me off Onfi. When I exercise a bit or for whatever reason my sodium goes down, even with the sodium tablets, the Trileptal is inefficient so Zonegran was added and I believe it works. It is kept at the lowest effective level of 200mg. So my levels are as follows.

Trileptal- 1500 mg/day somewhat effective but sodium problem (backbone of meds)
Lamictal- 150 mg/day effective but too low of a level due to side effect
Zonegran- 200mg/day effective and at low level
Onfi- 40mg/day Never seemed to help and have been on over 4 years

Will the 40mg of Onfi for over 4 years create more health deficits than the benzo withdrawal problem? How difficult will the withdrawal symptoms be compared to other benzo medications? Is there healthy ways to combat the withdrawal symptoms?

Thank you,
xxxxx