Living with epilepsy - Introduce yourself & meet others

@bruceg
Hi Bruce,
I disagree that your problems are small. Memory loss always makes a huge impact in anyone’s life. Don’t devalue the seriousness of this problem. There will always be people worse off but your issues are still significant. If your willing to change medications there may be a better alternative for you. Dilantin/Phenytoin seems to cause fewer memory issues. You may want to ask your Neurologist.
Also a neuropsychologist may be able to help with memories as well as a speech pathologist.
Jake

@bruceg
Hey there,
I was just curious about how your memory was prior to your Epilepsy diagnosis. Also what type of seizures did you have?
Jake

Thanks, Jake
I will try this with my Neurologist.

Hi, @mmas - how are things with your daughter? Did you end up doing another increase with her cannabidiol (Epidiolex)?

Yes, she is at max dose. Haven’t seen any improvements with the epidiolex. We increased her Trileptal and since we have done that she has been going 2-3 weeks with no seizures. We have neuro appt in July so will discuss possibly increasing epidiolex or getting her off. Some studies showed that we could increase more by based obviously on side effects etc. she is also on Vimpat which makes her crabby in the morning after she takes it which effects school and the desire to learn. Not too many options with that one since there are no extended release. She has been on vimpat and oxtellar (extended trileptal) for many years. If anyone has suggestions would love to hear them? Getting her on the extended release with the Trileptal was a big difference in mood. Thanks for reaching out!

This week's member spotlight is for one of our most active members @jakedduck1. He's always willing to offer his support and share some laughs.

Transforming stigma to acceptance: Meet @jakedduck1
https://connect.mayoclinic.org/page/about-connect/newsfeed-post/transforming-stigma-to-acceptance-meet-jakedduck1/

Hello, I am writing on behalf of my husband, who has had 6 seizures after a stroke at age 74. He is 77 now, and was doing pretty well, except for a seizure about every three months. The stroke was in his right hemisphere, temporal and parietal. He had an abnormality in that his language center is located on the right side, even though he is left handed. He almost fully recovered from the stroke, with aphasia being the most resistant to therapy. It is the seizures, and the medications for them, that are severely affecting his quality of life.

Does anyone have any experience to report on being on Keppra 2500mg./day, Lamotrigine 50 mg./day, and Vimpat 200 mg/day? He was on Keppra 3000 mg/day after the first thee seizures, and then after the fourth, the neurologist at a hospital in Boston added the Lamotrigine and the Vimpat. He was found to be at toxic level on the Keppra when they started to slowly reduce the dosage and he had the most recent seizure. His cogntition, mood, gait, balance and ability to function are now severely compromised. I know it is important to not have any more brain tissue damaged, but this state is not sustainable for him. I sent in a mesage via the hospital portal asking if they could at least do a level, or look at the combination. I know any reduction in dose is also a possible trigger for a breakthrough seizure. Any information would be appreciated. Thanks in advance!

Hello, @dap - it sounds as though your husband had been through a lot. That's very difficult that seizures and the medications for them are compromising his quality of life now.

I'm hoping that Connect members like @crstyday40 @jakedduck1 @dawn_giacabazi @jenniferhunter and others may have some input related to the seizures and effects of the medications he's taken for control.

Have you heard back from the hospital? If so, how did they want to proceed?

@dap
You made a statement I’d like to briefly address.
“I know any reduction in dose is also a possible trigger for a breakthrough seizure.” Although I generally agree with your premise that statement is not always true. I’ve known some people who lowered their medication and either reduced and one mans seizures stopped.
Cognitive, mood, gait and balance problems are side effects of his medications. I have known countless people who discontinued Keppra due to mood issues, most often women. I’ve been on Anticonvulsants for 52 years, when I walk down the sidewalk I sway from the street to people’s lawns. I also fall occasionally. You mentioned he’s having “Ability to function” issues. Are you talking about his Functional abilities like activities of daily living? For instance,
Walking, Talking, Eating, Dressing, Bathing, Drinking or more cognitive problems like Memory, speech, vision, making decisions, solving problems. I assume he’s having Tonic Clonic Seizures. If not could you describe them.
Take care,
Jake

Hi, @mmas - wondering how your daughter is doing with her increased oxcarbazepine (Trileptal) recently? How did her summer neuro appointment go?