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Living with epilepsy - Introduce yourself & meet others

Epilepsy & Seizures | Last Active: Jun 29, 2023 | Replies (462)
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@heal33

Hi, I'm Linn. I have had partial seizures for over 40 years. I have tried different medications but none have ever stopped my seizures. Recently I tried Keppra and later Tegretol as add ons but neither worked and caused acid reflux. I have been taking Lamictal since 2004 because that doesn't have intolerable side effects but unfortunately does not eliminate them. I have tried neurofeedback and the ketogenic diet (which I was on for 1 year and quit due to acid reflux). Thought of maybe going to Mayo to see if someone there might be able to help with a cases where meds don't work.

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Replies to "Hi, I'm Linn. I have had partial seizures for over 40 years. I have tried different..."
Colleen Young, Connect Director | @colleenyoung | May 11, 2020

Hi @heal33, welcome to Mayo Clinic Connect. It is frustrating to have medication resistant epilepsy.
Mayo Clinic experts in epilepsy care work together to provide individualized care to each patient. You can read more about epilepsy care at Mayo Clinic here: https://www.mayoclinic.org/diseases-conditions/epilepsy/care-at-mayo-clinic/mac-20350102

Fellow members @oyeks and @debirwin stated these discussions that may interest you:
- Seizures despite medication https://connect.mayoclinic.org/discussion/oyeks-1/
- Any experience w/ med: Oxcarbazepine (Oxtellar XR, Trileptal)? https://connect.mayoclinic.org/discussion/new-medicine/

Would you like me to connect you with other members who are also patients of Mayo Clinic?

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Leonard | @jakedduck1 | May 12, 2020

@heal33
Welcome to Mayo Connect Linn, nice to have you with us.
Wow, 40 years of seizures with no control, unfortunately I know what it’s like. I’ve had Epilepsy for 53 years and frequent generalized seizures for 44 years. I’ve had some close calls during partials (Focals.)
Going to the Mayo Clinic Epilepsy Center and consulting with an Epileptologist sounds like the best decision you could make.
Here is some information on the Mayo Clinic Epilepsy Center in Rochester Minnesota.

https://www.mayoclinic.org/diseases-conditions/epilepsy/care-at-mayo-clinic/mac-20350102

Also if I were you I’d ask the Neurologist about DNA testing (Pharmacogenomics) for the best seizure medication and dose. Here is some information from Mayo Clinic.

https://www.mayo.edu/research/centers-programs/center-individualized-medicine/research/translational-programs/pharmacogenomics

Wishing you the best of luck,
Jake

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