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

Posted by dap @dap, Jan 1 2:09pm

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!

Liked by Leonard

@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

Liked by Lisa Lucier

REPLY

Hi @dap@jenfossbru and @boston2mayo have recently mentioned going to a Mayo Clinic facility for epilepsy and may also have some input on what you can expect. @dawn_giacabazi also may have some thoughts.

Liked by Leonard, boston2mayo

REPLY

From our experience, after seeing many doctors and so called specialists in Boston, our treatment at the Mayo Clinic in Rochester was an answer to our prayers. My 10 year old son experiencing up to near a dozen seizures a day. All the medications experiments didn’t help. The doctors here in Boston didn’t have any options for him but to keep trying different drug combinations. After 1 visit to Rochester, they had a plan and explained exactly what was going on. Although every case is different, his surgery was very successful. We just celebrated 10 years of seizure and medication freedom. I highly recommend the Mayo Clinic. Best of luck.

Liked by Lisa Lucier, Leonard

REPLY

Good Morning,
Yes, we took my son for a second opinion at Mayo Rochester Mn. All previous testing, hospital stays, etc was sent to them before our appointment that we completed over four month span before epilepsy diagnosis in Twin Cities. We brought all medications/supplements with us for them to review what he was taking. On the day of the appointment, they started with an EEG and then we met with a few doctors to really detail out what his episodes looked like. Questions like-Does his head go one way or the other during a seizure? What do his eyes look like? What is the color of his skin? How is he breathing? What do things look like after the seizure? We really needed to think about those things because it happens fast, but dramatic you also can't forget. He at the time was taking Keppra and the side effects were bad for him, so we started transition to Trileptal. That was a miracle itself because we had our son back. They recommended neuro-psyc testing and a more detailed MRI in 6 months. They take A lot of time talking to you about their thoughts, opinions as well as your questions-so have some prepared. Our son was only 17yrs, so we had a lot of questions about school, sports, alone time, driving, etc. We are now with a clinic in the Twin Cities and feel better equipped to handle things as advocates for our son, but Mayo will always be our back up plan if we don't feel right about a situation. We do not regret the time and money for getting the second opinion and review. Even our clinic in the Twin Cities was happy we were going there for the MRI as they are so good and detailed, better than in the Twin Cities. Does that help? I am sure there is more I can say, but not sure what you may want or need. Best of luck to your husband, I hope you get answers and a plan.

Liked by Leonard

REPLY

How often does your son seize and results of his EEG? we videotape episodes so our neurologist can analyze the movements

Liked by Leonard

REPLY

So he had 4 seizures in 4 months. His are focal, gets an aura before occuring. He had more auras than seizures before medication. His eeg's were all normal. He spent 3 days in hospital to be video taped & extended eeg – nothing. The first mri showed the back of his brain was older than his actual age. That is what Mayo checked again last month with the more detailed mri to make sure his brain was not changing & looked at blood flow.

Liked by Leonard

REPLY

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

Liked by Leonard

REPLY
@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

Jump to this post

Sure, like by email?

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@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

Jump to this post

Hi, @cc001 – I hope things have gone well with the video EEG with your daughter.

If you would like to connect more privately with @jenfossbru or another member, I'd suggest you might try the Mayo Clinic Connect private message function, which you can access by clicking on the small envelope icon at the upper right of any Connect page.

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@jenfossbru

Good Morning,
Yes, we took my son for a second opinion at Mayo Rochester Mn. All previous testing, hospital stays, etc was sent to them before our appointment that we completed over four month span before epilepsy diagnosis in Twin Cities. We brought all medications/supplements with us for them to review what he was taking. On the day of the appointment, they started with an EEG and then we met with a few doctors to really detail out what his episodes looked like. Questions like-Does his head go one way or the other during a seizure? What do his eyes look like? What is the color of his skin? How is he breathing? What do things look like after the seizure? We really needed to think about those things because it happens fast, but dramatic you also can't forget. He at the time was taking Keppra and the side effects were bad for him, so we started transition to Trileptal. That was a miracle itself because we had our son back. They recommended neuro-psyc testing and a more detailed MRI in 6 months. They take A lot of time talking to you about their thoughts, opinions as well as your questions-so have some prepared. Our son was only 17yrs, so we had a lot of questions about school, sports, alone time, driving, etc. We are now with a clinic in the Twin Cities and feel better equipped to handle things as advocates for our son, but Mayo will always be our back up plan if we don't feel right about a situation. We do not regret the time and money for getting the second opinion and review. Even our clinic in the Twin Cities was happy we were going there for the MRI as they are so good and detailed, better than in the Twin Cities. Does that help? I am sure there is more I can say, but not sure what you may want or need. Best of luck to your husband, I hope you get answers and a plan.

Jump to this post

Thanks so much for sharing your experience. I am so glad that you were able to use the clinic to get a better treatment option with the medication. I am hoping to have some information that will make it better for my husband's health and that his quality of life can improve. Best of luck and thanks again!

REPLY
@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

Jump to this post

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!

Liked by Lisa Lucier, Leonard

REPLY
@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!

Jump to this post

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?

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@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

Jump to this post

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

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