Can Keppra be discontinued after craniotomy to remove tumor?

lynn49
It's not uncommon to stay on seizure meds for a year or more after surgery.
As the brain heals scar tissue may develop which can alter electrical signals possibly triggering seizures. Better to be safe.

@joetex
As far as discontinuing seizure meds, don't stop abruptly and seek medical advice on how to cut back or stop.
I abruptly stopped when I was 15 and went into status epilepticus (brain unable to terminate seizure on its own) and was in an induced coma for 8 months, forgetting every memory I ever had.
Take care,
Jake

@jakedduck1 Thanks for sharing your experience. I didn’t know it could be so bad. I’m definitely taking my doctor’s advice on this and possibly will be on from now on.

A small part of a Grade 1 meningioma was left in place during a craniotomy in 2018 because it encased my optic nerve and was too risky to remove. I started 750 mg Keppra twice daily post craniotomy and was told I’d be on it for life. After a year or so, I recognized that it caused me great fatigue and possibly affected my balance, too. At my request, my neurologist reduced the dosage to 500 mg twice daily and ordered up a blood test. I was told that the blood test showed Keppra levels that were too low to be effective and bumped me back up to 750 mg twice daily, where I remain today. It still makes me tired and I do not have much stamina for strenuous activities, but no seizures. The “ no seizures” part makes me accept the side effects I don’t like because a seizure would change life significantly, like eliminating driving privileges for 6 months in my state. So, I live with it, it’s a trade off.

Hugely helpful- thanks! You're exactly eight!😊

@fiddlinchuck
Haven't you noticed your fatigue has lessened after taking Keppra for 8 years?
I've been on seizure meds for 60 years. The fatigue & balance issues have improved, although the memory problems have worsened.
Take care,
Jake

Jake,

Many thanks for the reply. The fatigue issues have not gotten better. There are other meds I take that also have drowsiness as a side effect, so it’s hard for me to tell which one is dominant. I just noticed that after I started Keppra, the fatigue got worse and it has not improved, even after 8 years I’ve considered asking about other anti seizure meds but have not yet done so. Your situation gives me hope that maybe it will improve?

@fiddlinchuck
Basically all seizure meds cause at least some degree of drowsiness.
Lamictal/lamotrigine
Dilantin/Phentoin
Topamax/topiramate
However, when my doctor offered Topamax I refused because of Potential cognitive side effects, but more importantly due to the possibility of very severe eye side effects, which have led to blindness. Topamax is well known in the epilepsy community and some Neurologists as well call it Dope-a-max.
Dilantin is a first generation drug and first generation medications are known for having more side effects. I took Dilantin for 25 or 30 years with no problems.
I never took Lamictal but I believe it has the best side effect profile of any seizure medication.
Take care,
Jake

My husband had a meningioma removed surgically in 2015. He was on Keppra for30 days, tapering overtime. He never had a seizure and lived another 10 years.

Location of the tumor surgical site may be the issue.

Get a second opinion.

I take lamictal but not for brain problems. I did notice some slight fatigue but it is countered by taking MODAFINIL. I have had zero trouble with modafnil. In fact, it perks me up, I think more clearly and I’m much more centered.

Maybe ask your doctor about modafinil -it can’t hurt to be proactive.

I do take gabapentin also, originally an anti seizure drug. They are doing drug trials with gabapentin and other old FDA approved for brain tumors btw

@judyandchloe: What is the purpose of the study regarding gabapentin and brain tumors? What correlation are they trying to ascertain?