1. < Epilepsy & Seizures

Has anyone been seen at one of the Mayo Epilepsy clinics?

Posted by dap @dap, Jan 1, 2020

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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dap | @dap | Jan 7, 2020
In reply to @jakedduck1 "@dap Hello, I’m sorry to hear about your husband’s stroke. Seizures happen in approximately 5% of..." + (show)
@jakedduck1

@dap
Hello,
I’m sorry to hear about your husband’s stroke. Seizures happen in approximately 5% of people who have strokes which are caused by brain damage and/or abnormal electrical activity.
I believe you made a wise choice in going to Mayo Clinic since they have a top notch level 4 Epilepsy Center where your husband will no doubt be evaluated by an Epileptologist who is a neurologist specializing in epilepsy.
Does your husband have Focals (use to be called partial seizures or localized seizures) are seizures which usually affect only one side of the brain) or Generalized (Affects the entire brain with loss of consciousness) Tonic Clonic (Old terminology Grand Mal)
Unfortunately memory and cognitive problems are very common side effects when taking Anticonvulsants. I assume the Epilepsy Center hasn’t talked to you about what tests will be done.
Aside from the usual Neurological evaluation they may do an EEG, perhaps a sleep deprived EEG or most likely if he’s admitted they may do (VEEG) Video telemetry EEG. They will monitor his brain waves, heart rate and video him. They may take him off his meds so he’s more prone to have seizures and they may want him to stay awake all night which usually produces a better brain wave report and evaluate the physical characteristics during the seizure to hopefully pinpoint the seizure focus (where the seizure begins) to better determine what type of seizure it is which will in turn help them prescribe the most appropriate medication.
Unlike when I was first diagnosed (Over 50 years ago) with epilepsy the only imaging available at the time were standard x-rays, nowadays they have a myriad of different scans they could do to check various things even at the cellular level.
Best of luck,
Jake

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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!

REPLY
1 reply
Lisa Lucier | @lisalucier | Jan 23, 2020
In reply to @dap "Thanks so much. He has had tonic clonic and focal seizures. We've used a rescue medication..." + (show)
@dap

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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Hi, @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?

REPLY
Lisa Lucier | @lisalucier | Jan 24, 2020
In reply to @cc001 "We are about to do the video EEG my daughter is 15 yrs ..are you able..." + (show)
@cc001

We are about to do the video EEG my daughter is 15 yrs ..are you able to connect directly off this discussion board? I feel like we have similar situations with our kids

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Hi, @cc001 - just wondering how the video EEG went for your daughter and what you learned from it?

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