New to Mayo, Old to Epilepsy

Posted by hobbitinhopeland @hobbitinhopeland, Jun 3 7:03am

My new neuro (I hadn't seen one in 12 years as recommended my previous neuro: "we need to wait for science to catch up to your brain") has referred me to the Mayo Epilepsy Specialist to figure out what kind of seizures I'm having, and if i have more than one kind.

It feels a bit intimidating.

Any tips or suggestions?

Hello @hobbitinhopeland and welcome to Mayo Clinic Connect. Congratulations on your referral, although I hear some apprehension. What feels intimidating so that members can best support you?

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@amandajro

Hello @hobbitinhopeland and welcome to Mayo Clinic Connect. Congratulations on your referral, although I hear some apprehension. What feels intimidating so that members can best support you?

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@hobbitinhopeland
I suppose anything new could be somewhat frightening. I would look forward to new doctors with possible new suggestions and perhaps treatment plans. I believe it would be more exciting since Mayo Clinic offers you hope and you may even come away with your questions answered and with so much helpful information. Who knows, you may come away seizure free. It does happen. Remember at Mayo they have meetings to discuss cases so you could benefit from many professionals not just one.
Are you planning to go to Mayo Clinic in Rochester Minnesota? It’s the top rated hospital in the United States and a top rated level 4 Comprehensive Epilepsy Center.
Is the plan to be admitted to their Epilepsy Center for video EEG testing and other testing?
What type/s of seizures are you manifesting? Absence, Tonic-Clonic, Focal or Myoclonic jerks? Has/is your seizure disorder intractable?
Similar to what @amandajro mentioned I too am curious as to why your intimidated. Would you feel comfortable sharing your with with the group?
Are you concerned about having your medication discontinued to promote a seizure or testing that may be new to you?
Ive been in several level 4 Centers and although my seizures continued perhaps they wouldn’t have had I agreed to the treatment they offered, but treatment outcomes are something no one can predict.
How long have you had Epilepsy? How often do you hav seizures.

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Thank you for your care and questions, @amandajro and @jakedduck1.

I had my first seizure in, I think it was, 2001. Between that first one and around 2009, I'd been diagnosed with epilepsy, undiagnosed, rediagnosed, and back again. Sometimes they said it was complex migraines, other times partial complex temporal lobe epilepsy. The last I had been told (until I saw a neuro in 2020) was "Come back in ten years when science has caught up with your brain. We're working on it." They asked for ten years, I gave them a couple more knowing "hospital time". My recent neuro ran basic EEG, which wasn't helpful (no seizure activity). Aphasia, among other things, is a consistent component. She's thinking I might have more than one thing going on. So she's sending me to Mayo. I guess the intimidation factor is… feeling the enormity of experience that Mayo has (Jax FL), what if they too tell me, "We just don't know. Good luck."? So I guess I'm asking… What can I best do to make sure I do everything on my part so they get a right diagnosis? My current neuro said, "After all you've been through, you deserve accurate answers." I agree. I'm in my 50s and…tired.

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@hobbitinhopeland
Hello,
Your chances of knowing your seizure cause is at best 50%. If the calculation that 1.2% of the population has Epilepsy is accurate more that’s more than 93 million people have seizures, it shows the vast number of patients who will never know why they developed the condition. Although I don’t know but I doubt wrong diagnoses are included in the 50% figure. I’ve had seizures for 53 or 54 years and different Neurologists gave different diagnoses instead of admitting they didn’t know.
The good news is you’ll receive a more accurate diagnosis at the Mayo Clinic especially if your admitted to the Epilepsy Center.
Have you ever seen an Epileptologist or been in an Epilepsy center?
Do you have an appointment at Mayo yet?
Hope you will keep us updated on your progress
Take care,
Jake

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I see an Epilepsy specialist at Mayo next month. I was in an EMU many years ago, but they said the science was limited back then. Here's to hoping for good news. Or any even fairly concrete news at this point. 😊

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@hobbitinhopeland
Just curious if you’ve ever had a sleep, sleep deprived, ambulatory or video EEG or only routine EEG‘s.
Jake

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@jakedduck1

@hobbitinhopeland
Just curious if you’ve ever had a sleep, sleep deprived, ambulatory or video EEG or only routine EEG‘s.
Jake

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I've had sleep-deprived EEGs and in the EMU they had a video and EEG on me for I think 5 days, some of which were very sleep-deprived. But not an ambulatory one.

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@hobbitinhopeland

I've had sleep-deprived EEGs and in the EMU they had a video and EEG on me for I think 5 days, some of which were very sleep-deprived. But not an ambulatory one.

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@hobbitinhopeland
Did you ever have a seizure during an EEG?
Did they stop your seizure meds?
Jake

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@jakedduck1

@hobbitinhopeland
Did you ever have a seizure during an EEG?
Did they stop your seizure meds?
Jake

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They saw a spike on the EEG but they admitted back then they didn't really know what it meant. Could have been epilepsy or migraine-related. So they had me live as if it's epilepsy until science got better. I remember I had to try several different seizure meds. Finally landing on gabapentin (which also helped nerve pain). But now the neuro switched me to Lyrica for the nerve pain. And is sending me to Mayo to figure out the seizures.

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@hobbitinhopeland
Is the Lyrica just as affective as the gabapentin was for the seizures and the neuropathy?
Jake

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@hobbitinhopeland
Have you ever had generalized seizures where are your seizures always focal? I’m curious how your seizures manifest themselves. Could you expand on what happens during them?
Jake

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@hobbitinhopeland

I see an Epilepsy specialist at Mayo next month. I was in an EMU many years ago, but they said the science was limited back then. Here's to hoping for good news. Or any even fairly concrete news at this point. 😊

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All the best in your appointment at Mayo this coming July, @hobbitinhopeland!

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