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Focal Onset Aware Cluster Seizures
A MyEpilepsyTeam Member asked a question 💭

Has anyone have this? What treatments helped you ? My son is 13 years old and is having clusters since introducing Banzel . We removed Banzel but the cluster seizures won’t go away. He has 15 of them yesterday … any info is appreciated.

My doc does not care… I am
Looking for other doctors . I live in Dallas

posted April 7, 2022 (edited)
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A MyEpilepsyTeam Member

My Epileptologist prescribed me for a seizure recovery medication, for when I have cluster seizures. I use Lorazepam. It’s a generic brand of Ativan. Ativan is actually an anxiety medication, but it works great at slowing down to stopping the seizures.

posted April 7, 2022
A MyEpilepsyTeam Member

@A MyEpilepsyTeam Member Personally my
Flare ups change what I experience. The flare-up I had July 2005- March 2006 I had 80-100 of multiple types of seizures a day and it was impossible to recover. This most recent flare up that started April 17, 2021 I could have several in a single day. I am an adult and seizures again evolve because I was never treated for them all my life. Multiple seizures is common.

I read everything I can find on what I experience and keep detailed notes and videos. Finding an epileptologist will help however no one will help as much as you and your knowledge of what your son experiences. Being assertive, confident and knowledgeable when you speak about his episodes is valuable.

Researching the keto diet or modified Atkins diet may be beneficial. Changing my diet in March 2006 I believe helped the seizures stop.

Find other parents here on this site that can help support you as well. We all care and support each other how we can.

Keep loving him mamma. Xoxox

P.S I haven’t met anyone with epilepsy that doesn’t have unanswered questions. We all do and the doctors do not have many at all.

You might want to post a question looking for parents…

posted April 7, 2022 (edited)
A MyEpilepsyTeam Member

@A MyEpilepsyTeam Member I have focal epilepsy with impaired consciousness which includes being aware as well. Clobazam or Onfi was added and it stopped my tonic clusters and actually all my seizure activity so far. It is much less sedating than other benzos and doesn’t affect me so much emotionally. Idk 🤷🏻‍♀️ if your son can take it however maybe asking your doctor about it and researching it’s use with children may help? I wish you and your son all the best. Xo

I am in Houston, TX and go to University of Texas Neuro Science Center. Maybe there is one in Dallas?

posted April 7, 2022 (edited)
A MyEpilepsyTeam Member

Anyone who has seen Bassel Abou-khalil is he a good neurologist

posted April 7, 2022
A MyEpilepsyTeam Member

Do you know what
Type of seizures you get Did your Tell you did you ever had an EEG EKG Blood count done some Med's
Might have side effects ask your Dr questions and how many mg are the meds you ask questions about it
Bring a family member with you or a friend you trust

posted July 15, 2022

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