I was diagnosed with grand mal epilepsy back when I was 18 years old in the Army stationed at Schofeild Barracks HI. I am now 51 years old. I remember the first seizure I ever had, I was with a buddy down in Honolulu and we were about to get on a city bus and go back to Schofeild. I stepped up in the bus and fell back out on the sidewalk. Next thing I knew, I was awakened by a doctor at Tripler Army Hospital and had no idea as to how or why I was there. This was in the late seventies so army hospitals were not that well equipped. The army doctors did not have a clue what had happened to me. I guess just in order to get me out of their hair; they decided it was drug related. I had never touched any kind of drugs, legal or not, I didn't even like to take aspirin. No drugs were found in the blood test they did either. Anyway, my company commander decided that I needed to volunteer for drug rehab. My therapist at rehab sent several messages to my captain telling him that this was wasting their time. I passed every drug test the army could muster. Well, in the mean time; the seizures continued at least twice a month and sometimes more. They even sent me to a psychiatrist. They finally sent me to a neurologist at Tripler. He did several tests and decided that I had Grand Mal Epilepsy from a temporal lobal sclerosis. He said this was probably caused by a head injury I got when I fell and destroyed my knee. I have taken every kind of seizure prevention medicine you could think of, so many I can’t remember the names of them. Finally the doctors at the VA in Birmingham Al decided to try Depakote at 3500 mg a day (7 pills). This got the seizures down to one every 3 or 4 months. I even went 8 months one time without one. Last year in August, I had to have a total knee replacement in my left knee. The surgeons had to stop the operation and wait for a pint of blood platelets to be pumped into me. They said the count was below 50,000 whatever that means. After the surgery, they had to give me more. They all put their heads together along with my neurologist and decided the Depakote was causing this loss of platelets. My neurologist decided then to take me off the Depakote and put me on Levetiracetam, 1500 mg a day. Guess what, they are back. I have averaged 1 to 2 seizures a month sense the change in meds. I do know this, it’s very, very true that seizures get worse with age. Now it takes me a week to 10 days to get over one. I have read that the Depakote is physically worse on the body than Levetiracetam, but the Levetiracetam has some pretty nasty side effects also. I get fighting mad about the least little thing that used to didn’t bother me at all. My wife says that if this medicine is causing this, it has got to go or she will go. She did say it was my choice. Anyway, I have an appointment with my doctor in a week.
My Lord, I didn’t realize this post had gotten so long. Sorry!

Hello and welcome to NeuroTalk. Happy to see you have come to be with us. Just let us know if we can be of any help.

There are great number and caring fellow members here to assist you. Our shouders are here for support in many ways. Sorry to hear about your situation. I have had epilepsy since I was 10 and it was hard to control. Mainly i was having petit-mals. At this time I am on keppra and lacmitcal but has you said the older I got the seizures got worst. I would suggest that you take B12 vitamin, it has helped me out through the years. Aviod bright flashing lights, like at a theater Iusually cover my eyes at that time. My thoughts and prayers are with you.

Again welcome, looking forward to seeing you around.

Darlene

Thanks Darlene,
I do take B12, My wife will beat me if I miss a dose. I have noticed that if I am in a room with florescent lights, I get that aura. I have to wear dark sunglasses in order to go to the VA hospital, folks probably think I'm just trying to be cool (I wish). I had to have cateract surgery done on both eyes back in 2009 and when they do that dialation, it gives me a fit. I have know idea what meds they will try next. I just know for sure the Levetiracetam ain't gona work.

Thanks for the welcome, I'll be around.

rlj1959

Hi rlj1959,

I can understand what you are going through I took Depakote for many yrs. for my absence (petit mal) and complex partial seizures and it worked great but just like you I had to go off of the drug because it lowered my blood platlet level to the point that I was almost bleeding internally. Since then I haven't found a single drug to help stop my seizures. I tried the lamictal and I broke out with a rash from the drug after taking it for only 4 days. I also took tegretol and trileptal and the same thing happened. You might want to try taking mysoline which breaks down into phenobarbital it works well for many people who have grand mal seizures. Also cut back on the carbs. and starch foods because it has been proven that to much of this kind of food will cause seizures.
In regards to the light you may be photosenstive which means that certain colors can trigger seizures for you. I had a special e.e.g. done where they would flash different color strobe lights one at a time and they found that florescent green, amber, and bright white like the sun shining on the snow will trigger seizures for me. You might want to ask your Dr. to order this special e.e.g. to be done. You can also request a DNA test be done on you and by doing this the Dr. can find out what seizure med will help you the most with the least side effects. Take my word the Drs. don't like to do this because they are losing money from the pharmacies but you have every legal right to have this test done.
Thank you for serving our country! I'm very proud of you and I sure wish I could have gone into the military but it was my epilepsy that stopped me. I have a lot of family that made a career of the service. One cousin served 41 yrs. Here's wishing you and your family only the best and May God Bless All of You!

Sue