Anyone have experience w FTD and seizures?

Posted by dannymarcuccio @dannymarcuccio, Nov 11 4:03pm

My husband has advanced Frontotemporal Dementia and has had seizures, both brain and behavioural, which require him to be on anti-seizure medication (Keppra). Has anyone else experienced this?

Interested in more discussions like this? Go to the Caregivers: Dementia Support Group.

gregd1956 | @gregd1956 | Nov 12 12:07pm

Hi @dannymarcuccio

You said he’s got has brain memory & behavior but the big one (to me) of brain-seizure.

For me, I’ve lost and maybe loosing my brain-memory was cause by an accident, 12 years ago. My memory past was lost decades ago and it’s gone. The idea of losing mental-problems could happens worse and faster.

From my anti-seizure, it took me 3 years ago, 3 times a day of GABAPANTIN - thank about this - 3 years with zero-seizure… until then, I went to hospitals 2-3 times a years cause by seizure.

As far my brain is broken from 12 years ago. Doctors help my meds, going to different medical places, saying the right-way of what I need and in… WHAY? It’s not me; it’s my wife, who can drive and going to our drug-stores and paying our restaurants and going to our church and buying our food stores, fixing from pros fixing our water/electeisy and on. Before my accident, I did everything like working at my city; buying at our houses, and on and on…

Make sure, you need to take care of your husband and use the help of your families.

Thx,
Greg D. @greg1956

PS: Do you have part of your Italy family?

Becky, Volunteer Mentor | @becsbuddy | Nov 12 11:01pm

@dannymarcuccio Welcome to Mayo Clinic Connect! I’m really sorry to hear about your husband’s seizures. They must be so difficult for both of you. I have the names of a couple of members that I will ask to join this conversation: @IndianaScott @boppie @maryvc and also another discussion group: https://connect.mayoclinic.org/discussion/frontal-temporal-dementia/
Are you your husband’s main caregiver?

dannymarcuccio | @dannymarcuccio | Nov 18 10:01pm

In reply to @becsbuddy "@dannymarcuccio Welcome to Mayo Clinic Connect! I’m really sorry to hear about your husband’s seizures. They..." + (show)

Yes, I’m my husbands full-time caregiver, takes up to 16-18 hrs a day.

dannymarcuccio | @dannymarcuccio | Nov 18 10:06pm

In reply to @gregd1956 "Hi @dannymarcuccio You said he’s got has brain memory & behavior but the big one (to..." + (show)

Hi there
Tudor your response. We’re doing our best, the seizures are a challenge for us. Keppra seems to be working for my John.
My husband is Italian, from Sudbury, Ontario but all his relatives are
From Castel Campagnano in Italy.
Take care

carbry | @carbry | Nov 19 10:52am

Are the seizures under control with the Keppra? My husband started getting dementia in 2018, and then began having seizures, which weren't diagnosed as real brain seizures until 2019. Keppra helped a bit, but it wasn't until lamotrigine was added that they were finally brought under control. It's hard enough to cope with the dementia, but the added seizures are so unpredictable. I hope you can get some help. It is a very full time job. Hang in there!