Yes, I am still on Lamotrigine, Levetiracetam and Clobazam. As to how he knew (and the neurological committee agreed), he explained to me about the "honeymoon period" that happens immediately after enough of a dosage was in my body and my body was adjusting to it. During this period I can (and did) reach the month+ of being completely seizure free (not even an aura), but after I mentioned the full seizure on November 30th, the day before I went in for the triple appointments at Brigham and Women's Hospital (brain MRI, appointment with my neurologist and then the PET Scan later) he was pretty sure that this was the case and when I had other seizures in December, then he was sure. And when the MEG in January provided no additional useful information he knew it to be fact. And when he presented all of the new information from December 1, 2021 through January 2022 to the neurological committee, the agreed that his assessment was correct. And with the additional information that I had partial seizures which were originating in both temporal lobes (from the EEG Long Term Monitoring from a week in October), they knew that I was not a candidate for anything more than a 5% chance of me reaching a long-term seizure free state with any alternative treatment currently available.
The key for me being able to calm down was when I met with the expert from the Dana Farber Cancer Institute who confirmed that the lesion (more like spots) in my brain was not malignant, was in fact not a source of any of my seizures (this was the one piece of information that the MEG confirmed from what was found in the brain MRIs (one in August and the other on December 1st) that it had not grown and had been there for a long time --actually created when I had my first febrile seizure as a newborn), thus all she will do is watch it with annual brain MRIs following the brain MRI that I will have in August. This confirmation lowered my stress level (just when my urologist confirmed for me when the scans showed that I had a non-malignant growth in my left kidney that would simply be watched with my annual ultrasounds).
And since my seizures are minor league rare general full seizures and complex partial seizures --both as absence seizures--when awake and the occasional nocturnal partial seizure and the more frequent auras, aura barrages, aura and simple partial seizure combos (a simple partial seizure is simply a longer aura with minor additional features) and the occasional partial seizure states (that can last for hours -- until I mention to fall asleep). So more annoying for me than the seizures is the brain damage to my memory because this is not reparable with modern technology.

Red… it was the Keppra XR (levetiracetam ER). It worked well for a time, but other changes caused my doctor to take me off of it. That was my experience. Good luck!

i have the old levsomething (keppra sub) and i tryed the 1/2 a tablet thing. i do not recommend this. no seizures but i felt off.. dizzy and angry and brain fog.

@A MyEpilepsyTeam Member Thanks John for clarifying that you were taking the Extended Release tablets 2x a day. Most directions mention just once a day. I have a doctor in the family and they suggested I take it 2x a day when we told them about my increased afternoon seizures so I asked my doctor and he said yes.

I am dividing the dose and adding clobazam 5 mg 2x a day to start. I really need this medicine to work. If it doesn’t I may need a dose of your acceptance. I appreciate the clarity.

Are you still taking the levetiracetam?

How did your team know so quickly it wasn’t going to work for you? Is it about being 100% seizure free or a reduction in seizures? Maybe this is the wrong question? I am wondering if it is not working for me (that is why I ask) and how to approach my doctor about it maybe not working due to my shoulder injuries caused by having so many tonic seizures.

Also, the increased seizure activity happened when I started clonazapam daily and I have found medical journals saying it can worsen tonic seizures.

Since starting the clobazam at night only I had a tonic seizure two afternoons in a row that never turned into a cluster of 4-6. That’s improvement. Today I started to take the clobazam 2x a day with the levetiracetam 2 x a day. I need to give it some time.
Have a great evening, Marsha Kay

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A MyEpile...

I already answered that. I have already taken Keppra, but had no idea Levericetam XR was Keppra!

Leslie