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?

Interested in more discussions like this? Go to the Epilepsy & Seizures group.

@patrassi

Hello! My name isPatricia and I live in Brazil with my loved family. We were at Mayo Clinic in January to have some tests in my younger son , 6 years old that had terrible seizures . In February 6 th he had hemispherectomy surgery and he is doing great! I would like to share our history and help who are in the same situation.
Thanks
Sincerely
Patrícia

Jump to this post

Welcome to Connect, Patricia.
So exciting to hear that your son is doing well after hemispherectomy surgery at Mayo. I’d like to introduce you to other parents who have children living with seizures. Please meet @clairesmom, @mmas, @ketomom, @hermsenk, @inkdfrog, @krd94 and @blath2000. You may also be interested in reading more about them in these discussions in the Epilepsy group.

– #AsktheMayoMom about Pediatric Epilepsy http://mayocl.in/2mzpuVY
– Ketogenic diet for children http://mayocl.in/2j4h7zQ

Patricia (@patrassi), can you tell us a bit more about the hemispherectomy surgery? What was the recovery like for your son? What was it like for you?

REPLY
@patrassi

Hello! My name isPatricia and I live in Brazil with my loved family. We were at Mayo Clinic in January to have some tests in my younger son , 6 years old that had terrible seizures . In February 6 th he had hemispherectomy surgery and he is doing great! I would like to share our history and help who are in the same situation.
Thanks
Sincerely
Patrícia

Jump to this post

I am so glad for your answer! Thank you very much@colleenyoung.
First of all I have to apologize about my English… I will try to do my best…
My little son was premature, and he had a brain hemorrhage that caused him leukomalacia and hemiparesis. Since he was 6 months he is having lots of medications for epilepsy and the crisis, were worst every time…
His seizures were not so frequently, but really hard, it usually lasts about 20 minutes and he always becomes purple. So we heard about a surgery that could helps him , and we went to Rochester with our hearts full of hope .
We first met the wonderful Dr Wong , so kind and generous that asked us for a monitoring EEG.
They took all his medication and we stand at the hospital waiting for the seizures… It was terrible for all of us… We were scared, tired… It happened in the third night and lasts 45 Minutes.
So they introduced us Dr Wetjen that explained us about the surgery, left craniotomy… Hemispherectomy. He said he would definitely lose his side vision and maybe his right hand would be worst (it was weaker because of the hemiparesis.) And he also explained us that seizures like those would certainly damaged his brain in a irreversible way.
So we decided for the surgery, for his life, for his future…
The surgery was on February 6th , he stayed for 2 nights in the intensive care and then more 4 days in the regular room at the hospital. On the first days he had much pain and fever …But soon they were gone. On Saturday Feb 11th we were discharged and we came to Brazil some few days later.
It was not easy for all of us… It was hard , we had some much fears , so many doubts… How could a person survive with just one hemisphere?!
But here we are, happy and relieved! He is having therapies since the hospital, and he is walking, talking, thinking as he always did… A beautiful and happy Kid… And from now on with a better future waiting for him !
He is taking Vimpat and Trileptal , and he will take it for more 2 years, and so hopefully as the doctors believe , he will be seizures free.
I would like to say that the doctors at Mayo Clinic were great and they give my son a new life!
Sincerely
With love and grateful
Patricia

REPLY

Hi all! I’m Ana. I’m 34 years old with Epilepsy. I live with petite mals, complex partials that generalize, & tonic-clonic types of seizures. I started having noticeable seizures about 10 years ago when my son was only 7. Actually going on 11 yrs. I had a VNS Implant put in about 6 years ago. I’ve had completely drug-resistant seizures till this year when my Dr.(Dr. Gamuac in Pueblo, CO) put me on a xombination of Lyrica, Lorazepam, & Fycompa. I’m currently trying to research all info i can find about this cure for Epilepsy in Cuba. Any info would be most appreciated.

REPLY
@lovingtruth83

Hi all! I’m Ana. I’m 34 years old with Epilepsy. I live with petite mals, complex partials that generalize, & tonic-clonic types of seizures. I started having noticeable seizures about 10 years ago when my son was only 7. Actually going on 11 yrs. I had a VNS Implant put in about 6 years ago. I’ve had completely drug-resistant seizures till this year when my Dr.(Dr. Gamuac in Pueblo, CO) put me on a xombination of Lyrica, Lorazepam, & Fycompa. I’m currently trying to research all info i can find about this cure for Epilepsy in Cuba. Any info would be most appreciated.

Jump to this post

Welcome, @lovingtruth83.
I’m tagging fellow members @matermiracle and @dawn_giacabazi to share their experiences with you.
Lovingtruth, I’m glad to read that you are researching about curative treatments available. It is wise to be open-minded, yet skeptical when evaluating treatments that claim to cure. In this article from Mayo Clinic current as well as future treatment options are discussed http://mayocl.in/2ujDLcU

How encouraging that your doctor has found a drug combination that is currently controlling your seizures.

REPLY

Hello, I was recently diagnosed with Epilepsy. It is a generic diagnosis as all my tests (MRI, EEGs, CT scans) came back normal. My current neurologist put me on Keppra. My first seizure was at the end of March, 2nd one was May 4th, and 3rd was May 13th. I was doing really well when my Dr. increased my Keppra until this past Friday….I had 4 mini seizures and then a tonic clonic seizure. My Dr. increased the Keppra again on Friday, but Saturday I had another seizure. I never did get a second opinion and am starting to think I should. The last 2 seizures I’ve had I have been conscious throughout. It is soo scary. I’m very new to this so I wouldn’t mind someone else’s opinion….

REPLY

Hello folks
I’m 61 yo and have had 4 seizures in 2 years at work,,my last seizure was June 22, 2017. The company we were working for wanted me off their site asap.Of course my supervisor to me to the ER. I had a EKG and MRI, said my potassium was very low but insisted I go see a neurologist when I got home. But what puzzels me is the 25 mg 4 times a day of Librium. In1995 I broke my neck 2 times within days apart, had to wear a halo. My question to all of you, that was 22.5 years ago could it be from the car accident? And does the dosage of the Librium sound like a lot?
Thanks for taking the time to read this.
headcase

REPLY

Welcome to Connect, headcase1710.
I moved your message to the Epilepsy & Seizures group so you can meet others who are talking about seizures and medications. I’d like to introduce you to a few members. Please meet @dawn_giacabazi @ketomom @stayfree @vanessapaugust @thoferer81017. Also meet @bettyann who has taken Librium.

From what I read, chlordiazepoxide (Librium) is used to treat seizures, anxiety and sleep disorders. It is part of the class of drugs known as benzodiazepines. Headcase, have you been diagnosed with epilepsy? Do they know what is causing the seizures? And why was Librium chosen as a treatment.

REPLY
@ahernandez

Hello, I was recently diagnosed with Epilepsy. It is a generic diagnosis as all my tests (MRI, EEGs, CT scans) came back normal. My current neurologist put me on Keppra. My first seizure was at the end of March, 2nd one was May 4th, and 3rd was May 13th. I was doing really well when my Dr. increased my Keppra until this past Friday….I had 4 mini seizures and then a tonic clonic seizure. My Dr. increased the Keppra again on Friday, but Saturday I had another seizure. I never did get a second opinion and am starting to think I should. The last 2 seizures I’ve had I have been conscious throughout. It is soo scary. I’m very new to this so I wouldn’t mind someone else’s opinion….

Jump to this post

Welcome @ahernandez.
Do you know why the doctor increased the dosage of Keppra?

REPLY
@ahernandez

Hello, I was recently diagnosed with Epilepsy. It is a generic diagnosis as all my tests (MRI, EEGs, CT scans) came back normal. My current neurologist put me on Keppra. My first seizure was at the end of March, 2nd one was May 4th, and 3rd was May 13th. I was doing really well when my Dr. increased my Keppra until this past Friday….I had 4 mini seizures and then a tonic clonic seizure. My Dr. increased the Keppra again on Friday, but Saturday I had another seizure. I never did get a second opinion and am starting to think I should. The last 2 seizures I’ve had I have been conscious throughout. It is soo scary. I’m very new to this so I wouldn’t mind someone else’s opinion….

Jump to this post

They increased the Keppra because i had seizures this past weekend. I had been seizure free for about a month.

REPLY

My name in here is robertjr .Ive had grand mal seizures since i was 5.So great being able to come to places like this and talk to others about our problems.Growing up always felt like i was only one with grand mals in the whole town.When i was growing up wasnt told much,back then seemed like wasnt told much.Kinda always inbackground at school,no sports no proms.Evenafter school done fired ,,so many times after a seizure.luckly founda wife and a company that accepted my problems and was ok with my lost time.One big mistake for me was smoking,told i have copd 12 years ago .quit smoking 8 years ago but now have very sever copd ,on oxyjen 24/7.Been seizure free over 4 years but breathing is a big problem now.Starting to wonder how bad things might get on next seizure.Right now anything physical im huffing for air.A seizure with convultions last 2 to 3 minutes..I guess having someone call ambulance and hope is all ican think of.Havent gotten any real answers yet,maybe someone here can help.

REPLY

My name is William and supposedly I fell off a swing set when I was two years old. I haven’t had a seizure until i was 46 years old (2011). The doctors took a golf size object out of my head which consumed some of my brain. So they had to take some of that out as well. I was out drinking with the guys from work (which I did quite frequently). My guess is that led to the seizure, but not sure. My seizures isn’t quite as frequent as most of the people on this board. I was on Keppra at first for three years. Prior to the seizures, I was getting Exceeds on my reviews at work. Immediately after the seizure (and after my rehab) I was getting does not meet. My doctor recommended I get a neuropsychological evaluation. I took it and the results were positive that there was some brain deficiencies. Which only made sense considering the operation. To make a long story short, she could send me on disability, so I went to another doctor at a different hospital. They switched me to another medication (Oxtellar XR). I’ve been on this med since 2015, but lost weight about 15lbs and have double vision occasionally. I’m not sure what to do considering the Keppra didn’t seem to work and I’m having problems with the Oxtellar XR. I’m also taking Carvedilol 25Mgs twice a day, 5mg of amlodipine, 5mg of Lipsinopril. My last seizure was January 17, so it could be that I have another one coming. Or, the fact that my double vision have become more severe and i almost pass out with it might be the alternative to an actual seizure. Perhaps someone can help me withe this one.

REPLY
@williamdj

My name is William and supposedly I fell off a swing set when I was two years old. I haven’t had a seizure until i was 46 years old (2011). The doctors took a golf size object out of my head which consumed some of my brain. So they had to take some of that out as well. I was out drinking with the guys from work (which I did quite frequently). My guess is that led to the seizure, but not sure. My seizures isn’t quite as frequent as most of the people on this board. I was on Keppra at first for three years. Prior to the seizures, I was getting Exceeds on my reviews at work. Immediately after the seizure (and after my rehab) I was getting does not meet. My doctor recommended I get a neuropsychological evaluation. I took it and the results were positive that there was some brain deficiencies. Which only made sense considering the operation. To make a long story short, she could send me on disability, so I went to another doctor at a different hospital. They switched me to another medication (Oxtellar XR). I’ve been on this med since 2015, but lost weight about 15lbs and have double vision occasionally. I’m not sure what to do considering the Keppra didn’t seem to work and I’m having problems with the Oxtellar XR. I’m also taking Carvedilol 25Mgs twice a day, 5mg of amlodipine, 5mg of Lipsinopril. My last seizure was January 17, so it could be that I have another one coming. Or, the fact that my double vision have become more severe and i almost pass out with it might be the alternative to an actual seizure. Perhaps someone can help me withe this one.

Jump to this post

Hi William, welcome.
What was the mass that you had surgically removed? A brain tumor? You mentioned that your double vision is getting more severe. Is it constant?
I’d also like to introduce you to another new member, @ahernandez who was asking about Keppra. I hope you can share your experience with him.

REPLY
Please sign in or register to post a reply.
  Request Appointment