Living with epilepsy - Introduce yourself & meet others

Welcome to the Epilepsy group on Mayo Clinic Connect.
Having seizures, or being told you have epilepsy, affects people in different ways. Let’s learn from each other and share stories about living well with epilepsy, coping with the bumps and offering tips.

I’m Colleen, and I’m the moderator of this group, and Community Director of Connect. You’re likely to also meet fellow member and volunteer patient Mentor, Dawn (@dawn_giacabazi), when you post to this group. Learn more about Moderators and Mentors on Connect.

We look forward to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one. Grab a cup of tea, or beverage of you choice, and let’s chat. Why not start by introducing yourself?

@mst3000

Hello and Good Afternoon!

My younger brother Matt of 28 years has just had his seizure medication changed to Vimpat since he had close to 10 Grand Mal seizures this year, having been seizure free since November 2009.

My Questions:

Do doctors usually have more inputs than just a person's weight, age, and last Grand Mal seizure for seizure medication adjustments?

Do medical teams reporting to prescribing doctors, use the genome of the patient to mathematically model upcoming nerve stimulations?

If so, would the intent of the model be to predict the magnitude of neuron release from the synapse based on blood content circulating through the brain in addition to the air content being inhaled?

If so, would all Mayo Clinic sites do this type of modeling, or would the Rochester site be solely assigned to modeling neuron output of a patient's synapse?

I see many parts of both questions could possibly be answered from this thread.

Thank you for being my brother's voice.

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@mst3000, I see that your questions went unanswered. These are such great questions that I'd like to bring in fellow members @dawn_giacabazi, @bonnieh218 and @jktaheri who may be able to shed some light about genomics, neuron models and treatment at Mayo Clinic campuses.

You also asked about Mayo Clinic doctors working with your local specialists. In some cases this may be possible. I encourage you to contact Mayo Clinic to inquire https://www.mayoclinic.org/appointments

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About a month ago I had been told to ask my grandaughters doctor to have an online consultation with a mayo clinic seziure specialist. How would I go about setting that up? My granddaughter is still in a coma after 2 months while her doctor still tries to stop her seziures.

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@mmaryemc

About a month ago I had been told to ask my grandaughters doctor to have an online consultation with a mayo clinic seziure specialist. How would I go about setting that up? My granddaughter is still in a coma after 2 months while her doctor still tries to stop her seziures.

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I am so sorry to hear that your granddaughter is still in coma. Try to contact Mayo appointment office to request an online service.
The number is 507 5383270

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I wanted to update you all on our visit to my 31y/o son's neurologist appt. It was uneventful at best. Both were the same age and neither one had much to say to one another. Most of my sons records had not been sent to this doctor including the initial MRI that was done after his 1st seizure which I assume is why there was nothing to discuss. They just stared at each other until I began to ask basic questions. Then I brought up the side effects he was having with Keppra and the fact that it wasn't controlling his seizures adequately which seemed to get the ball rolling. All in all it was like pulling teeth!
How is it possible to have such a serious medical condition and receive such inadequate information from a specialist in this field?! I get more direct information from the internet which is very sad indeed.
In the end he was prescribed an additional medication ,oxcarbazepine to supplement the Keppra he already takes. Does anyone here have experience with this drug on its own or in combination with Keppra?

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@michele0161

I wanted to update you all on our visit to my 31y/o son's neurologist appt. It was uneventful at best. Both were the same age and neither one had much to say to one another. Most of my sons records had not been sent to this doctor including the initial MRI that was done after his 1st seizure which I assume is why there was nothing to discuss. They just stared at each other until I began to ask basic questions. Then I brought up the side effects he was having with Keppra and the fact that it wasn't controlling his seizures adequately which seemed to get the ball rolling. All in all it was like pulling teeth!
How is it possible to have such a serious medical condition and receive such inadequate information from a specialist in this field?! I get more direct information from the internet which is very sad indeed.
In the end he was prescribed an additional medication ,oxcarbazepine to supplement the Keppra he already takes. Does anyone here have experience with this drug on its own or in combination with Keppra?

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My daughter who is 5 takes that. She used to take it with keppra but now takes it with vimpat. I would recommend taking the extended release version which is called oxtellar XR. I found she had way less side effects and only has to take it once a day. Obviously with a 31 yr old he can tell you how he feels which is nice. I kind of have to observe. But I definitely would suggest that!

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Hi there, my name is Richard, & in 1988, when I was 18 months old, I was diagnosed with epilepsy, I'm now 31. I had a small number of grand-mal seizures. My epilepsy was made of some nocturnal & mainly complex-partial seizures. From 1988 until late 2017 I had epilepsy. Neurologists have always said live with someone for safety. So I live with my mom in Jacksonville Fl. She & her brother had epilepsy but out grew it in their teen years. I had brain surgery at Mayo Clinic in May 2017. We did a follow up EEG study in September 2017 & they saw no activity. I'm now 1 year seizure free, after being told I'll always have epilepsy. Thank You Lord! In September I drove a car for the 1st time in my life. I took lessons & got my license. I now own a new Toyota Camry.
That brings me to my question. All my life, until this past September 2018, I've been in the passengers seat. Now driving, after being told I'll never be able to, & owning my own car has changed my life & opened the world to me. Thank You Lord! I'm Christian in case you haven't noticed ;-). Has anyone in this group had or know someone who had epilepsy, then got it under control, got their license, & can drive? If so what's their experience like? My life is completely different from what it used to be. I used to be house bound, now I'm not. I'm just curious as to what others have experienced going from having epilepsy to not having it & driving?

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@burner12

Hi there, my name is Richard, & in 1988, when I was 18 months old, I was diagnosed with epilepsy, I'm now 31. I had a small number of grand-mal seizures. My epilepsy was made of some nocturnal & mainly complex-partial seizures. From 1988 until late 2017 I had epilepsy. Neurologists have always said live with someone for safety. So I live with my mom in Jacksonville Fl. She & her brother had epilepsy but out grew it in their teen years. I had brain surgery at Mayo Clinic in May 2017. We did a follow up EEG study in September 2017 & they saw no activity. I'm now 1 year seizure free, after being told I'll always have epilepsy. Thank You Lord! In September I drove a car for the 1st time in my life. I took lessons & got my license. I now own a new Toyota Camry.
That brings me to my question. All my life, until this past September 2018, I've been in the passengers seat. Now driving, after being told I'll never be able to, & owning my own car has changed my life & opened the world to me. Thank You Lord! I'm Christian in case you haven't noticed ;-). Has anyone in this group had or know someone who had epilepsy, then got it under control, got their license, & can drive? If so what's their experience like? My life is completely different from what it used to be. I used to be house bound, now I'm not. I'm just curious as to what others have experienced going from having epilepsy to not having it & driving?

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Hello @burner12, Welcome to Mayo Clinic Connect. Thank you for posting. First off, Congratulations to you and owning your first car! Second, you will notice I moved your question to this thread- where you will have the chance to meet other members living with epilepsy. I felt like your post was a great question for the group to answer.

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@jamienolson

Hello @burner12, Welcome to Mayo Clinic Connect. Thank you for posting. First off, Congratulations to you and owning your first car! Second, you will notice I moved your question to this thread- where you will have the chance to meet other members living with epilepsy. I felt like your post was a great question for the group to answer.

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Thank you ma'am, I certainly understand. I've been going to Mayo for over a decade & never knew they had this forum. So great to fin, & I'm looking forward to helping others. God Bless

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@mmaryemc
Hello Mary,
Curious about how Talia is getting along? Hopefully Talia’s seizures have stopped by now. I hope all is going well with your family.
My thoughts and prayers are with you,
Jake

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I'm sorry to say the doctor says her seizures have not stopped. They've given her so much medication it has kept her in a coma. They say they had to to keep her from brain damage. Now they're afraid she may not wake up. The medication affected her liver terribly so she came close to liver failure. They say she's a special case they've never seen anything like before. I tried desperately to get them to contact the Mayo Clinic in Rochester but the doctor said he has his own specialist he's been in contact with. I've come so close to being defeated and broken and I can't bear to see my little granddaughter like that. But I refuse to give up hope. With prayers from kind people like you I know she can come back. Thank you so much for caring.

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@pamelastewart5

Hi! My name is Pam and I am the mother of a 40-year-oid son with uncontrolled seizures. They started without warning when he turned 3 (he was "normal" until then) and have continued for the last 37 years. No cause has ever been discovered. He lives at home and has slowly become totally disabled (mentally and physically) as the years passed and the seizures continued. They are when he is asleep 99.9% of the time, so we are fortunate there (less chance of injury). We have tried many anti-seizure medications, many diets (including the very strict ketogenic diet), and many alternative treatments without lasting improvement. For the last 2 years we have been trying medical marijuana, with mixed results. I would love to hear any suggestions/ideas that have worked for others in his situation.
Thanks so much!

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I am a 76 year old woman who has had undiagnosed seizures infrequently for years. Several days ago I had a seizure getting out of my car (took a while to figure out what happened) and was hospitalized and finally diagnosed. I've been put on medication and we'll see what happens. I hope it works! This one was bad!

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@jdernburg

I am a 76 year old woman who has had undiagnosed seizures infrequently for years. Several days ago I had a seizure getting out of my car (took a while to figure out what happened) and was hospitalized and finally diagnosed. I've been put on medication and we'll see what happens. I hope it works! This one was bad!

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Hi, @jdernburg, and welcome to Mayo Clinic Connect. Good to hear that you were finally diagnosed and put on medication.

Wondering what type of seizures you were determined to have and what medication you were prescribed?

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@mmaryemc

I'm sorry to say the doctor says her seizures have not stopped. They've given her so much medication it has kept her in a coma. They say they had to to keep her from brain damage. Now they're afraid she may not wake up. The medication affected her liver terribly so she came close to liver failure. They say she's a special case they've never seen anything like before. I tried desperately to get them to contact the Mayo Clinic in Rochester but the doctor said he has his own specialist he's been in contact with. I've come so close to being defeated and broken and I can't bear to see my little granddaughter like that. But I refuse to give up hope. With prayers from kind people like you I know she can come back. Thank you so much for caring.

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@mmaryemc
Hi Mary, Are you familiar with the Stanford University Medical Center and Medical School in California? Anyway they are also a level 4 Epilepsy Center. Stanford has a Children’s Center. I was told Mayo Clinic only treats people 16 years and older, at least at the Epilepsy Center. I’m skeptical if I was given the correct age information or not.

You may want to contact the Lucille Packard Children’s Hospital a part of Stanford Medical Center.

https://www.stanfordchildrens.org/en/service/epilepsy

May God be with you Talia, Mary and your entire family during these terrible days.

Jake

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@jdernburg

I am a 76 year old woman who has had undiagnosed seizures infrequently for years. Several days ago I had a seizure getting out of my car (took a while to figure out what happened) and was hospitalized and finally diagnosed. I've been put on medication and we'll see what happens. I hope it works! This one was bad!

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@jdernburg
Hi, welcome to Connect.
Can you tell us what type of seizures your having? What seizure med/s you are on?
Hopefully your medication will completely control any seizures. Medication successfully controls at least 70% of seizures.
Blessings,
Jake

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