Hi all, I'm new here. I'm 27, and was diagnosed with epilepsy about 7 years ago. I was first prescribed keppra, which didn't control my complex partial seizures, then put on dilantin, which I subsequently found I'm allergic to, and then prescribed topomax.
The topomax worked well initially at controlling the seizures, but recently the seizures have come back full force (and then some). My neuro upped the dosage, added keppra back to my regimen, and still no help. The side effects between the two drugs are nearly as bad as the almost non-stop seizures, and now the neuro is planning to send me to an epilepsy center in hopes that I'll be a candidate for surgery.
He specifically mentioned a temporal lobectomy. Has anyone had any experience with this, and if so, what was your experience like? I've done as much research as I think is possible, and have my next appointment with my neuro a week from today.
The last MRI (a few weeks ago) showed a spot on my brain, the EEGs all come back abnormal, and clearly, something's not quite right. I'm hopeful that an epilepsy center could provide more answers than my neuro has, but not sure I want surgery, necesarily, yet I know I can't continue to live with these seemingly never-ending seizures, also.
I'm incredibly frustrated, and yet, I can't seem to think well enough or coherently enough to form the questions I know need to be asked. I go armed with notes and written questions, and yet, the words don't come... and now, I'm babbling...
Thanks in advance to everyone!
Hi and welcome to the boards. I was diagnosed with seizures 15 yrs ago, and I underwent Right Anterior Temporal Lobectomy April/2008 (age 26), and so far I been seizure free. Its not a easy decision to make, It wasnt for me, but it was the best decision I could have made in my life. To begin, they will need a series of test done to figure out what type of seizures you have and what location of the brain they are coming from. To decide wether you are or not a candidate they must make sure that surgery is not going to effect your motor skills, speech, or memory. Do you know what lobe your seizures arise from? most common surgeries are Right temporal because most the memory, motor and speech is located on the left temporal lobe, although I know many people that have undergone left temporal lobectomy, but it holds more risks. Since your still unsure of the specifics, we wont discuss the surgery yet. Right now the main focus is to find out where the seizures are coming from, which type it is, and what are the chances of surgery being a solution for you compared to other methods like VSN... I wanted to surgery to get off meds, but I still have to wait 2 yrs post-surgery to tamper off the meds.. Test will take months, so continue to study, post any other questions you have, and keep us updated.. I wish you the best and hope you are a candidate
Last edited by 030free; 11-07-2008 at 09:44 AM.
Thanks for your reply!
I'm not positive about my seizures' origination, but I know my neuro thinks they're starting in my left temporal lobe, which doesn't sound as promising, from the research I've done, and from the few people I've found who have had experience with the procedure.
I say I'm not positive because there's a communication breakdown sometimes between the neuro and myself... he can have a gruff and brusque bedside manner, and while I don't need to be coddled, the last thing someone with memory issues needs is to be brushed off... anyhow, that may be a topic for another thread!
Hopefully if he does send me to the epilepsy center, at the very least, the tests there will help to clear up the unanswered questions, and even if I'm not a candidate for surgery, I'll at least have more answers.
Thanks again, and I'll definitely be using this board now that I've found it!
Had an MRI and EEG done this week. My doctor said that I was not a candidate for surgery because it is not coming from one certain area of my brain.
She did change my meds, I have had epilepsy for 42 years and was controlled with Dilantin and Phenobarbitol. However must have either gotten used to the medication or with my age is no longer effective.
Now on Keppra and Penobarb..no more Dilantin. The Keppra gives me mood swings if taken on an empty stomache; but haven't had a seizure for monthes
alana 1953 Im sorry to hear surgery wasnt an option for you, but Im glad the new meds are working for you. I been on Keppra and trileptal for a few years now, and I take them on a full stomach to avoid any side effects, so far so gd. wish you the best of luck...
Moody25, have you been reffered to another E center yet?
Thanks for asking! I actually have my first appointment with them in about two weeks. I don't really know what to expect a this point- I've waited so long to get in that now I feel like maybe the seizures are all in my head (no pun intended)... and I'm just going crazy.
I never even though of having an operation until I went to a new doctor. Have been through more tests in the past month than in the last 30 years; one would think the tests should come first, then the treatments.......
He considered an operation but when he got the results he said that the seizures were coming from several areas of my brain,, he had hoped for just one area, so he said that an operation was not an option.
But he changed my meds and have been seizure free for over 2 months, hopefully I am on the right tract.....
I'm new here too. I'm forty now and was born with Hydrocephalus, and with it, came (Complex partial) seizures. They come and go, but slowly have become more frequent as I have grown older and as a result lost my job five years ago because of my seizures, and limited use of my left arm and leg. I've been on many drugs through out my life which include- Dilantin, Tegratol, and felbetal, to name a few. Right now, I'm on Keppra and Lamictal. I Have had CAT scans, Spect scan, PET scan,and MRIs. In October 2004 my doctor sent me to The Cleveland Clinic where I had a Temporal Lobectomy performed on the right side. It worked for a couple years but the seizures returned. I feel a little better now, knowing that I am not the only one struggling with this, and I hope I can help others as well as get support myself. Sometimes I feel like I'm at witts end.
I had a right anterior temporal lobectomy with selective amygdala hippocampectomy on Oct 12, 1999. I have had great success with having no seizures since. I would suggest talking to your neurologist about getting 24-7 EEG monitoring at a hospital that specializes in epilepsy to see if you are a surgical candidate. Some people are and some aren't. It is a very worthwhile but uncomfortable experience. If you're a candidate, go for it. Just keep in mind that there are never any guarantees with any surgery. I work in a operating room and see things everyday. I went in with lots of risks that I was willing to take. It's all about attitude and what you want out of life. Good luck.
Last edited by firefly821; 01-20-2009 at 12:01 PM.
Reason: wanted to add a comment
Moody, I might have TL surgery in awhile. You must think about it and WANT surgery. There are over 20 medicines out there and maybe you should try a few. My epilepsy was niagnosed in 1970 and I didn't find one that controlled my grand mals (tonic clonics) till 1996. I still have complex partials though. Lamictal contols mt grand mals but we are all different. BTW, if your Dr is pushing surgery before talking about other ways, perhaps you should change Drs.
I left out a couple things. The neurosurgeon in Cleveland where I had my seizure surgery said there was a ten percent chance I still might have a seizure once in a while, but nothing like before. I also have a shunt, and on July 16th 2007 the shunt failed. So on July 20th I had a new one put in (the third in 38 years). My doctors here in Fort Collins feel that this surgery( shunt revision) caused my seizures to increase again to what they are today.
ColoradoGuy and Lamb,
I'm wondering if you drive and/or work? I've been placed on temporary disability, and go to the epilepsy center next week. At my current job, driving was something I did for work on a semi-regular basis, although I did not technically drive for a living. It was an unofficial part of my job description.
I also had acute attention to detail as part of my job description, which is a major part (as well an an hour long commute) of why I can not currently work. However, I am planning a move closer to work, and can get the seizures under control with medication alone, I'm all for that.
I'm hoping next week's appointment will prove fruitful.
I'm just most hopeful that returning to work and a productive life is in my very near future- a future at least mostly free from seizures.
Thanks so much everyone!
Yes I do drive, and I do have a little warning most of the time before I have a seizure. My seizures happen at night sometimes or I avoid driving ( among other things) when I feel a seizure might be coming. My doctor feels that since I'm paying attention to this I'm o.k to drive. I started working for my previous employer in October of 89', when not much was understood about Epilepsy. But of course that changed through the course of time I was working for that company for 14 years . I lost my job back on August 2003 because my seizures became more frequent and interfered with my work. I too was placed on short term disability, which unfortunately turned into long term. I am currently not working, and trying to find a part time job right now is proving to be a little difficult because of my physical limitations and seizures. I'm trying to stay positive, but it's hard.
Coloradoguy, Im sorry to hear about the shunt failure, but now what are they going to do about it? what are the current neuro plans for the reduction of your seizures?
Moody25, I been driving since I got my license at 17,and I was diagnosed the same year. I had simple complex siezures (minor) and I too as coloradoguy, had Auras which prior to an attack gave me warning and I would pull over or if I got really sick, I would stay home. I had 5 neurologist in 15 years and none of them had a problem with my driving as long as I knew how to avoid an accident (until today I been accident free, Thank GOD!!) so this depends on your neurologist and the type of seizures you have. I do agree with moving closer or taking a bus/taxi on those days you feel very sick, I had my worst days during my menstrual changes, so I would take the bus to work and college.. I do wish you the best of luck with your decision
My shunt was replaced on July 20th 2007, so that problem is solved, and right now I'm taking Keppra and Lamictol. My seizures are better then were, but my doctor says unfortunately I may never be totally seizure free.
I am glad to hear that shunt think worked and you are on different meds. Unfortunately you say you will never be seizure free.
Interesting because that is what my previous doctor had said as well. And to make matters worse it was, somehow, my problem/ life style/ the fact I was getting older......bottom line there was nothing more he could do.
So I asked my sister in law, who is a nurse, to find me the best doctor in the tri state area. Three weeks later she had the names of two doctors who she said were the best at controlling seizures. I picked one and one month later had my first visit with her.
After talking to me and reading my medical records from the last 40 years she was upset to put it mildly. She immediately scheduled me for an MRI and EEG, and put me on Keppra and started to wean me off Dilantin. She said I might have a seizure while adjusting my medication and she was correct; however it was not a grand mal because I never lost conscienseness. After finally being off the dilantin I have been seizure free.
Unfortunately the EEG proved I was not a candidate for a brain operation but she has a better idea of what triggers and how my seizure last and effect me.
I asked her how many seizures she would expect me to have in the future. That upset her and she said it was her job to make me and keep me seizure free.
It is sad that my first doctor didn't have that goal as well. We have to focus on the bright side of what life gives us; so for me I feel like am started all over again and finally on the right track.
So Colorado Man don't give up; get a second or third opinion. I was was told the same thing you were; that there was no hope of being seizure free for decades and I believed it........
Chris Im sorry to hear this, but i agree on persuing a cure medicine is very advaced now... I was told the same thing prior to surgery in 2006, and this april Ill hit 2 yrs seizure free.. Dont give up and visit other neuros... Wish you all the best
My neuro is having me try Keppra XR (extended-release) instead of the regular Keppra. A once daily med I'll take along with the Lamictol I'm on (400mg twice daily). My doc said this may help with some of the side effects I'm experiencing, like Mood swimgs and balance issues. But as far my seizures go. All my doctors have said my situation is a complex one, no one knows. Because It's not just plain Epilepsy. My seizures were bruoght on by the hydrocephalus I was born with. I see her again in a month, then we'll go from there, and no Im not giving up hoping.