Has anyone been seen at one of the Mayo Epilepsy clinics?
My husband has an appointment upcoming at the Mayo Epilepsy clinic in Jacksonville, FL. What can we expect? They have all the records they requested. My husband is a stroke survivor that has had about 6 seizures in 2 years. He is on a lot of medication for a 77 year old person. Keppra 2000 mg a day, Vimpat 200 mg a day, and Lamictal 300 a day. He seems to be having rapid decline in memory and cognition since the Keppra went up and then the other two medications were added. I presume he will have an assessment interview and then maybe testing or options on medication changes? Any help would be welcome!
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Thanks so much. He has had tonic clonic and focal seizures. We've used a rescue medication (Klonopin sublingual) twice to stop them but he's been hospitalized for 3-4 days four other times. He seems to lose functioning after that and has deteriorated over time. It's hard to tell if it's the damage from seizures or it is the additional medications they have added with each seizure! I appreciate the information and find the Mayo forum extremely helpful. Thank you!
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3 ReactionsHi, @dap - wanted to touch base and see how things are going with your husband? Did he have his appointment at Mayo Clinic's Jacksonville campus yet?
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1 ReactionHi, @cc001 - just wondering how the video EEG went for your daughter and what you learned from it?
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1 Reaction@boston2mayo
We’re having similar situation with our son. Diagnosed at 4 and now 8, tried around 10 different meds/combos and nothing has worked. How did Mayo determine he needed surgery?
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2 ReactionsHi @laurabeck stay strong! Frankly, I wojuld have considered Mayo as my 2nd opinion venue if not for the approx 20hr plane ride Surgery for me had already been ruled out by the specialist here unless I wish tp hjave close to my braim removed. I am currently a lot from all profiles who are so kind to share their experiences. Despite the numerous MRIs and EEGS and the mixtures of all sorts of ASMs (going to try Briviact come end April), nothing works after a decade. The intensity had decreased, but frequency became close to daily 3 years ago from once evey 4-5 days. I am a little devastated. If Mayo really works....
Cheers,
Louis
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1 ReactionHi @laurabeck — @dannoyes and @keeg1010 son are both being treated for epilepsy at a Mayo Clinic facility and may have some valuable insights to share with you.
Chris
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