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Living with epilepsy - Introduce yourself & meet others

Posted by @colleenyoung, Dec 7, 2016

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?

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.

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.

@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.

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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.

@robertjr

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.

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Hi Robert, nice to e-meet you. Having seizures can definitely be isolating. So few people understand what is happening. You mention that your company was accepting of your medical history and related absences. Was it also an environment where your work colleagues were willing to learn more about epilepsy and seizures?

Am I reading your message correctly that you were seizure free for 4 years but the seizures with convulsions have returned now?

@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.

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Yes, it was a brain tumor, but luckily the biopsy came back negative. The double vision almost happens once daily, but the worst part is sometimes I lose control of my body. As if my wife has to help me to the bedroom to sleep rest it off.

@robertjr

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.

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Hi Collen,my last job just told me there were certain jobs i couldnt bid on and couldnt drkve the fork truck.I ended up working 30years for them,had lots of sayso at the end.AlwYs someone to help if i needed it.Couple occassions while in hospital superviser brought me a empoyee of month p!aque,and envelope withmoney,trey had a collection and company matched it: For years i would get a grandmal at work come back and it was sorrycant work here.I learned to give my allcompany gave me chance and they werent sorry.Also ened up having family ,3 children 6 grand children and a wonderful wife..Maybe being born with epilepsy was in the stars.never know.

@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….

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Hello at @hernandez !!
I’ve read that they’ve increased the Keppra recently due to some seizures. I’m curious if you had any weight gain recently?A weight gain will facilitate the need to adjusted the meds and allow breakthrough seizures. I was on Keppra for many years and from my experience it usually takes 7 to 10 days for an adjustment to the med to actually change your therapeutic level. So you know if the doctor has checked your Keppra level in your blood to see if you’re maintaining a good therapeutic level? If not I would suggest asking him for a blood draw to check the serum Keppra level.

Praying for good control soon!
Dawn

@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….

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Hello…they increased the Keppra because i had 4 partial seizures and a gran mal seizure in a row and then another seizure the next day, a few weeka ago. Not due to weight gain. I was admitted to the hospital this past Monday after having another seizure Monday AM. I am still in the hospital being observed and having an EEG done. So ready to go home. They are trying to trigger a seizure but no luck so far.

@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….

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hi ahernandez..I am on phenytoin,ame thing as dilantin for over 30 years.Alwys had grand mals since 5.Been doing good on the phenytoin,right now over 4 years seizure free.oops hlpe ididnt jinx myself.lol.Thing is last yearand a half levelsgone into toxic level.little more than month ago in nospital for 5 days.finally got level togo down.now even less this month sti!l jumping up.Doctor having me weaned off and starting keppra.know most drugs rent the same for everyone,side effects.Im 63 with very severe copd too so not too thrilled about changeing,curious what people think about keppra.

Hello. I’m Chris. I’m 51 years old. When I was a Baby in a crib, my lungs filled up with fluid and my brain was deprived of oxygen. My mother came into the room to check on me in the crib and found me and rushed me to the ER. Today, the Drs. Think that may be why I have the scarring on my brain. I’ve had seizures since I was 10 years old. I have Partial Complex seizures. I had the VNS put in me and it didn’t work. The Drs. Took it out of me. I’ve been on many different medications. At the present time, I’m taking Tegretol, Keppra, and Vimpat. It seems these 3 medicines have controlled my seizures better than any other medicine in the past. I still have approximately 8 to 10 seizures a month in comparison to 20 or more that I used to have. I get them in clusters around the hormone time of the month. At times when I’m working outside or exercising too much I get over exerted and I’ll have a seizure or at times I’ve fallen down. My husband has come to my rescue me and caught me many times. I get triggers from cold, perfumes, strong, and, cleaning fluids. It seems the older I get the more sensitive I get to triggers. I’d like to get some information in reference to some food that may help.

@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….

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I’m 65 and have been taking Keppra for many years. It works for me and I have no side effects. I won’t let anyone even think about changing this RX because it has worked wonderfully for me. I take 500 mg. twice a day.

@carnation

Hello. I’m Chris. I’m 51 years old. When I was a Baby in a crib, my lungs filled up with fluid and my brain was deprived of oxygen. My mother came into the room to check on me in the crib and found me and rushed me to the ER. Today, the Drs. Think that may be why I have the scarring on my brain. I’ve had seizures since I was 10 years old. I have Partial Complex seizures. I had the VNS put in me and it didn’t work. The Drs. Took it out of me. I’ve been on many different medications. At the present time, I’m taking Tegretol, Keppra, and Vimpat. It seems these 3 medicines have controlled my seizures better than any other medicine in the past. I still have approximately 8 to 10 seizures a month in comparison to 20 or more that I used to have. I get them in clusters around the hormone time of the month. At times when I’m working outside or exercising too much I get over exerted and I’ll have a seizure or at times I’ve fallen down. My husband has come to my rescue me and caught me many times. I get triggers from cold, perfumes, strong, and, cleaning fluids. It seems the older I get the more sensitive I get to triggers. I’d like to get some information in reference to some food that may help.

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Welcome to Connect, Chris.
You mention that your seizures cluster, generally around your menstrual cycle, and also that as you get older, you’re more sensitive to triggers. Have you done any reading or talking to others about how perimenopause and menopause can affect seizure activity?

I found this article from the Epilepsy Foundation http://www.epilepsy.com/information/professionals/about-epilepsy-seizures/hormones-and-epilepsy/menopause-and-perimenopause

I wonder if anyone else here has any experience with changes in seizure activity and hormones, life changes, etc.

I digress. Chris you ask about food. You might be interested in taking part in these 2 discussions on Connect:
– Ketogenic diet for children https://connect.mayoclinic.org/discussion/ketogenic-diet-for-children/
– Connection between depression, epilepsy and nutrition https://connect.mayoclinic.org/discussion/connection-between-depression-epilepsy-and-nutrition/

Liked by Carnation

@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….

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bonnieh ,i hope it wrks as good for me.Been on dilantin for last 30 years.Trouble is level keeps riseing until intoxic range .three times in last year.even with a smaller doseage.

@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….

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I hope it works wonderfully for you as well. Good luck to you.

@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….

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Been taking for 5 days now,still on dilantin,stR cutting down on dilantin on friday.

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