New to forum-GrandMal seizures and med change to Keppra

[seizuredisordermom]

I have been on dilantin for grand mal seizures in upwards of 30 years. been very fortunate all these years that my seizures were very well controlled with Dilantin, and whenever they did occur, were only during sleep. So as life is grand I was thrown a loop and had a grand mal seizure a week ago at my office. The grace of God allowed it to happen after I arrived, within 10 minutes of driving to work, which is an hour away. Talk about luck! the previous day I was home sick, nauseauous, etc. Nothing like being wheeled out of your office in an ambulance clueless. Dr. made decision that it is a good time to switch me to Keppra from Dilantin. It took a few days to get out of the fog and constant sleep. I had 1 additional seizure after 2 days, but its been calm since the keppra was increased, and most of the tire effects have ceased. My EEG was extremely abnormal. To be honest, this is the first time in my life I've been truley scared of this disorder. I am extremely independent and very concerned for what this will mean career-wise. Any advice? Fortunately, both my sons are seizure free.

 

[seekinfo]

In the same boat

I can really relate to your problem; I had a seizure while substitute teaching a month ago, have lost my drivers license and had to quit working because I can't drive to jobs. I live in a place where there's no public transport and nothing within walking distance.
I had a previous seizure in 2007 and was put on a low dosage of Keppra. I tolerated Keppra well and I had no grand mal seizures until just recently. My Keppra dosage has since been doubled. For several years, I have also suffered from night-time shaking convulsions without losing consciousness. I've been told these seizures could be epileptic or non-epileptic, and have been recommended for a multi-day stay in an Epilepsy Monitoring Unit (EMU) for further diagnosis. However, my doctor has been unable to secure an appointment for me after several days of calling!
I am so frustrated! If you want to vent about similar issues, I'm the perfect person to vent to!

 

[Jennergize]

Wow- I can really relate to the career issues! I have only recently been effected by seizures, and I am still going through initial diagnostics. I've been on Dilantin for a little over a week, with positive results-- though negative side effects.
Since I am kind of in the same boat, (scared) I have no real answers for you, but just wanted to say that I can understand your fears about your career. I'm listening!

 

[daviscy60]

I can REALLY relate to what you are going thru. Started with seizures at 19 years old. Female and always thought cause was from hormones. I had been on Dilantin for 30+ years. Long story short. Had seizures in a store last December. My Dilantin level was low but not sure why. I'm stubborn and didn't do anything about it. Then in April had one at work. Made appt with neuro but couldn't get in until June. Had another at wrk middle of May. Had generalized tonic seizure during EEG. That afternoon Dr called and had me start on Keppra but was still taking Dilantin. After a month of seeing that everything was going ok she started weaning me off of the Dilantin. She had me cut back 100 mg a week until I was off of it. I started all this med change the first of July. As of august 29 I take nothing but 1500 mg Keppra. I am just now starting to get use to it. The last several months especially the first month I was miserable!!! Lost like 20 lbs depressed bad..,coordination was really off. I have just started feeling like I can go on. Still tired and have bad mood swings but nothing like when I started the switch.

Don't know if this helps any. But hopefully you will see that things should get better. I'm single and independent. They wanted me to go out on short term disability at wrk in May. But I did convince them that I was ok to work. Had some restrictions but on me but since I sit at a desk they did not affect my wrk a whole lot.

 

[valeriedl]

Unfortunately with meds you don't know what's going to work and what's not. You may have to go through many different meds and dosages to find out. And then you will have to wait a few weeks to see if it works. If it doesn't then you will have to go through the whole process again.

I've had epilepsy for 10 years and had to go through this a good many times. One recipe that I was on may have worked for a year or so then I may begin having more seizures again.

I got a VNS in 2007 which helped a lot with the number of seizures I was having a month. I am still taking medicine also. After I got it we had to figure out what and how much meds I should be taking with it. Every so often my neuro adjusts my meds. He's been trying to lessen them so I won't be taking so many. But sometimes that doesn't work, and as I said it may take a few weeks to find that out.