Living with epilepsy - Introduce yourself & meet others

@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

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.

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

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?

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!

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?

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.

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

@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

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.