I'm sorry to hear about your troubles
. I have LOTS of experrience with AEDs and they are pretty much all yucky as far as sleep inducing and very depressing. I have had epilepsy since 1970. I also had surgery to correct mine
. I had temporal resection. I had my right hippocampus removed. I have no more seizures now, but for 25 years of my life I had uncontrollable epilepsy. It $*c#$ doesn't it! I used to have to take Depakote 250 TID. I felt like I was coming out of a hangover, and everytime I almost got sober, it was time for another med
!! Anyway What type of epilepsy do you have? Grand Mals, petite mals, complex partials, simple partials? There are some AWFUL MEDS out there who most folks would rather have the symptoms rather than the treatment! I feel really bad for you, cause I know exactly what it's like!! You can't co anywhere unless you go with friends, family or a bus:trout:, you have to fight the side effects of your meds, and then you have to monitor your stress levels just to avoid having a seizure. I feel your pain, and I'm sorry. What med are you taking? The best med I HAVE EVER TAKEN is Lamotrigine (Lamictal) 100-200 mg/day. I currently take (when I remember) 1 pill once a day (particularly to have as insurance when I drive) of Lamictal. This is the one anticonvulsant that I have taken that has shown the least side effects of all of them. This differs from Pt to Pt so my experience may be very different from yours, but you might read up on the AEDs and ASK your NEUROLOGIST about surgical options, pacemakers, (implantable goes in under the clavicle), and Lamictal. You are not alone! I hated the WORLD for a VERY LOOOOOOOOOONG time, ESPECIALLY my Neurologist!!! It seemed that all he was interested in was GIVING ME ANOTHER PRESCRIPTION
!!!!! Oh yeah, maybe a little more of this pill, now we have a new one we want you to try along with this one, and on and on and on...
Yes, Sadly I'm no big fan of neurologiststrout
, too many bad experiences with AEDs that didn't fix the problem, just added to my long list of symptoms and complications!!!!! Extra weight gaintransient hair loss, tremors, depression, and apathy and just a HUGE lack of ANY energy
! I actually had to program myself to get up out of a chair, and even to move one of my hands up off of an object (like telling my right hand to move up now) Yeah, I could complain for hours about neurologists and anticonvulsants, but, unless you are willing to explore the surgical option (a very viable option for those with focal epilepsy where the seizures come from a single area of the brain) you may have to keep changing anticonvulsants until you find one that works for you. You should ask your neurologist to refer you to a neurosurgeon. Then ask him to perform an MRI on you and explore whether you are a candidate for surgery or perhaps an implantable device. That sounds crazy, I know, but one day, some 25 years AFTER I had been diagnosed with complex partial seizures (Epilepsy) my husband of one year (Oh I love that man!) was just browsing the internet in our apartment and he asked me "Why don't you get that surgery to treat your epilepsy?". He had just gotten his first CO-OP job before he graduated Electrical Engineering School at UT-Austin. Anyway, I was so excited that he had a job I was thrilled. He had also known me for some ten years before we were married, so he knew about my epilepsy, and somehow came back for the increased responsibility and stress and abuse anywayblushkiss. Go Figure!
Anyway, I told him to stick to fixing the electronics and the machines, and let me worry about my own brain thank you very! But then I remembered that I needed to make an appointment with a neurologist so I could get my prescriptions refilled. But NOW WE HAD INSURANCE, GLORIOUS INSURANCE and MY MEDS (all 250 dollars worth or more) would be COVERED, and MY DOCTOR would be COVERED TOO No MORE pulling money from where ever I could to buy my pills anymore. So I made an appt with a primary care physician and told him that I needed to see a neurologist to get my prescription refilled:caduceus:. I went to the neurologist on our plan, and I asked him: My husband said something to me the other day. He said maybe I should try this surgery to fix my epilepsy! Of Course, I told him that he was just CRAZY, because IF ANYtHING like THAT were available, SURELY one of my LONG-TERM NEUROLOGISTS who had been treating me for 10 or 15 YEARS WOULD HAVE TOLD ME ABOUT SOMETHING LIKE THAT
The next thing this man told me was"I'm gonna give you a business card, and I want you to make an appointment with this man. He is a former collegue of mine, and he works out in Baylor at The MEDICAL CENTER with Methodist and Baylor College of Medicine in Houston. Well, I just stood there with my mouth hanging, like I was in some kind of movie that I couldn't stop. I thanked him, and I took the card and the prescription. That was the last time I ever saw that neurologist! I remember his name as clear as a bell, but I couldn't say it if I tried. I'm also not sure about giving names on this board either. He was a Korean doctor, and I never forgot him, because he was the only neurologist I only saw once.
The next day I went to fill my prescription and I called the doctor's office from the business card. I told them my name and that I was a pt of a doctor here in Austin, and he told me to call your office to make an appointment to see you. I scheduled the appointment, and I met with the doctor. They explained to me that this was a medical seizure study, and I would have to be evaluated. I went through a few different tests. The first thing they did to me was schedule an MRI. I had the MRI and they told me that I could possibly be a candidate for surgery, but they would have to do some more tests on me to determine if I am a candidate. So they scheduled me for an MRI, a Language test, a psychological battery with a neuropsychologist, and an extended study EEG. I had to be admitted to the hospital and put on a long term EEG and VIDEOTAPED FROM HEAD TO TOE for 2 WEEKS! That was interesting!!! I was removed from ALL of my meds, hooked up to an EEG machine and videomonitored completely until I had 3 seizures on videotape!!! I laughed at first. I thought, Heck, you take me off ALL my meds, I'll be outta here by tomorrow! Well one day passed, and NOTHIN' then 2 days, then 3 days passed, and still nothin'. I was AMAZED!!! I said really, I think I'm cured, I didn't know it was possible to stop taking my pills and not have any seizures!! Well the next day I had a seizure. I was somewhat relieved. Then the nurse came in and told me that the seizure came from the place they had expected ( the place on the MRI). I was relieved. Now it was just a matter of time before more would happen. Then after a couple more days, I had another seizure, and after about 2 WEEKS I finally had three seizures!!! YEAH ME!!!!! Crazy, huh? Well then we went for psychological testing and another MRI. while I was in the recovery room (patient bay) I saw Jerry Lewis (of Martin and Lewis) you know (HEY LADY,) the Labor Day telethon guy. I just sat there and thought, Wow the place can't be that bad, Jerry Lewis is in here. Then he spoke to me!
He said, "Whatta ya in for?" I said, "Jerry Lewis is TALKING TO ME!!!!!!!!!"I told him "I'm in for BRAIN SURGERY!!!!" Who says things like that out loud? (just another page in the book of the story of my life!) He told me that "the people out here are the BEST!!!" He said "You are in REAL GOOD HANDS HERE!" I asked him what he was in for, and he said "heart surgery. " He had to have a tripple bypass! YUCK! Well, we wished each other well with our respective surgeries, and then the orderlies came to take us to our rooms. I'll never forget that!
Well, I was still not sure what the doctors were going to do as far as whether or not I was a candidate for surgery. I asked the doctors, and they introduced me to their chief of Neurosurgery!!! He was the cheif or Neurosurgery and the Head of the Neurosurgery Dept at the college. He told me that I had a condition called Hippocampal Sclerosis! I said "I just thought I had epilepsy." I was stunned. He asked how my seizures started, and I told him that I had severe ear infections when I was about 2-4 yrs old. I told him that I had fevers of 104 degrees and after a few years I started having auras and then I got simple seizures and then I had psychomotor seizures (complex partials) I told him I had been taking Depakote for about 15 years or so:
, and it still didn't seem to help very much. He told me he thinks he can fix them.
Then I was actually scheduled for SURGERY!! I really thought that I would be disqualified somewhere along the way, and the whole process would be a waste of time and aggravation, but somehow they actually scheduled me for BRAIN SURGERY!!! I remember when I was admitted for surgery the morning of the 21 of December in 1991. They prepped me and shaved my head and I told them, " I have always wanted to give my doctor a good piece of my mind, I just never really envisioned doing it quite like THIS!!!!!" That got everyone to laugh! Well when I went to sleep I had hair, and eight hours later, when I woke up, even before I opened my eyes, I noticed that my auras were COMPLETELY GONE!!!!!!!!!!!!!!!!!!!!!!!!
I was AMAZED!!!!! WoW! THIS IS WHAT HAPPINESS IS LIKE?yelclap:I like it!!!!! I remembered that the surgeon told me that one of the possible side effects was loss of short term memory and partial loss of peripheral vision on my right side. I wasn't worried about that, as soon I realized my AURAS were GONE I OPENED my EYES to see if I could STILL SEE!! I opened my eyes, and saw my husband
:and my parents and my sister and my inlaws and my friends there waiting for me! I could see everyone and everything and I hadn't forgotten any of them! I had some temporary problems with where did I put this thing, but it passed. I could see, and hear and remember and had NO AURAS!!!!
:yelclapLife was GOOD!!!!!
Then I fan my hand over the right side of my head to see how much hair I had lost, and I noticed about 64 hard metal STAPLES going down the side of my head!!!!!!! I thought to myself: They didn't EVEN SEW me SHUT!!! They just GRABBED A STAPLE GUN AND QUICK-FIXED ME? Then I ran my hand back around the back of my head and found a HOLE in the BACK of my HEAD!!!!!!!!! This thing was the SIZE of a QUARTER
or maybe even a HALF-DOLLAR!!!!!!!!! Heck, I bet If I put A QUARTER in I could get a GUMBALL OUT!!!!!!! I was SHOCKED!!!! but I was HAPPY!!!!!!!
Well I healed for about a week in the hospital, and then I was discharged and kept on a different anticonvulsant for about a year to minimize risk for seizures. after a year I came off the drugs completely and had no seizures. I had one or two while I was pregnant, but I haven't had any in about 11 years. I take only one pill and that is more for insurance while driving than because I notice effects if I don't. I just don't want to have to worry about having something unexpected happen when I drive.
Well there it is... I didn't want or try to turn this into a story about me, but, just know that you are NOT alone!!!!!