Epilepsy resulting from surgery to temporal lobe

[Mybraveface]

Tests revealed unknown type of brain tumours - gliomas or cysts . Surgery in 1989 showed they were benign epidermoid cysts which were removed. However, the craniotomy triggered epilepsy.... infrequent daytime absences and regular nocturnal seizures. Absences were quickly controlled with AED medication, but took 10 years to find clobazam.

GP stopped clobazam in 2006 due to concerns over benzodiazepines, and within 3 weeks had 2 nocturnal gran mal seizures plus post-ictal behaviour issues. Took 8 months to get back onto clobazam again.

Latest GP on advice from neurology gave advice last month to stop clobazam during problems with excessive sleepiness while switching AED meds which should never have been suggested. !!!

Obvious need for it is not on my medical records.

Long-term use of carbamazepine has caused multiple and increasing side-effects , so now switching from carbamazepine onto Levitiracetam.

Let's hope all goes well 🙏

[EpilepsyAction1 Partner Epilepsy Action]

Hi Mybraveface

We hope the changing of your medicine goes well. It can be a stressful and worrying time. So look after yourself during this time. epilepsy.org.uk/living/health

Communicating with people on here and through other social media, is a really good idea. So, I hope you hear from others in this community soon.

If you don’t, as well as managing the HealthUnlocked community, Epilepsy Action has other ways for you to contact others. These are:

Facebook facebook.com/epilepsyaction

Twitter twitter.com/epilepsyaction

Talk and Support virtual groups epilepsy.org.uk/support-for...

Talk and Support face to face groups epilepsy.org.uk/support-for...

From our experience, in most case people find it helpful to talk to or contact people who understand what they are experiencing.

Good luck.

Diane

Epilepsy Action

Helpline Team

[Mybraveface in reply to EpilepsyAction1]

Thankyou Diane. I do find this site useful, and pleased to help others if I can too. Over recent months I have had issues with drug side-effects and interactions, and have now commenced treatment with Brivaracetam instead of Levitiracetam. Currently finding out the correct dose of Briviact - 100mg bd was too much, causing extreme lethargy, but 75mg bd (along with 10mg bd clobazam) seems much better, and I am able to think clearly and behave like the real me again 🤞

[Mybraveface in reply to EpilepsyAction1]

Diane, I have had 12 really difficult months after my epilepsy medication was changed, but in my efforts to understand why the new drug I was switched onto wasn't working I found the following video which has helped me understand fully the reasons why. You may have noticed I have already posted this as a "MUST SEE " video for all receiving medical treatment for epilepsy on this site in the past few days.... youtu.be/YMOjfxfzEO4?si=LQT...(Not working as expected?)