Hello again everyone.
Man, it's been a long time since I've posted regularly. Someone once said that people only post when things aren't going well, when things are good they move on... That's actually pretty true. I used to post pretty regularly, then moved on and for the last few months have been looking for this site and haven't been able to find it.
I've been seizure free for four years. Or so I thought. I started having what I thought were possibly simple partials about six months ago and some serious headaches (which have been known to plague me before). I questioned hormones, blood sugar levels and again returning seizures. I had a brain tumor removed 4 years ago Aug. 21 and had been seizure free since then. I went to the neuro for the first time in over two years this last week (the headaches are just too much for me now) and she said I'm definitely having migraines and she thinks simples occasionally too. Uughh.. I started Topamax on Wednesday night.

Kinda creepy to be going down this road again,but like she said better to get it early and before it gets worse... Maybe in a couple of years I can try going off meds and they will be gone. Who knows.

Either way, I guess... I'm back.
stef

Hi Stefie,
I don't know if you remember me, but I had a tumor(colloid cyst) removed Nov 2000. I was on seizure meds for a year post op and was allowed to wean off the med. I went about 2 years without problems, then the dizziness, visual disturbances in left eye started. I went back to my neuro, and she had me take another eeg just to see what was going on. It was abnormal, and she started me on seizure med again. I continued this for about 2 years, and saw her again last month after having another sleep deprived eeg. She says normal, and to start weaning again. Honestly, I am scared the same thing will happen. Things will go fine for awhile, then I wind up having to go back on the med.

Somewhat reluctantly, I have begun weaning from the Trileptal. We will see what happens.

One thing about the topamax, it will help with the headaches as well as seizure control.

Hang in there. You have gone through a very serious surgery, and recovery.
I can totally relate to your feelings of frustration right now.

Wishing you the best, Dodi

I've been seizure free since tumor was removed 7 months ago but I have to go back to hospital every 3 months for "check-up" MRIs. That will last for 1 year then the check-ups will drop to once every 6 months. Then it will be MRIs once a year for the rest of my life.
I'm currently on Trileptal and Topamax and the neuro said that in Oct. I'll start dropping some of the meds but I will be on AEDs for the rest of my life.

I had an Astrocytoma removed 27 yrs ago. Didn't need AED's for the longest time. I was on Depakote for a couple of years but I have achieved better control with Keppra and have been sz free for over 2 years now. Wish you the best of luck gaining more control.

Hi Stefie,
It's good to see you back! I know that when my Dr. put me on Topamax it increased my sz. making me have 23 sz. in 1 month the AED just made things worse for me and just like you I got headaches also. I hope things get better for you and the sz. stop. Here's wishing you well and May God Bless You!

Sue

Hello again..
Thanks for the response everyone. I really have missed this site. I imagine everyone has.
Originally I was told I would have to do MRI's every year for the rest of my life but after a couple of them came back clean I would only have to do them if I had problems or symptoms (which for me seems to be whenever I have headaches,which is frequently).
I stopped taking AED's 9 months post op (I think anyways) and did fine (except for the headaches) until the vision thing started in. What was your vision distubance like? How did it progress? I'm a bit wierded out about the possibility of these small seizures "growing" into larger ones (exactly what happened last time over the course of several years).

I'm going to schedule another MRI soon. Just waiting for the hospital to call.

Jingle- You had a DNET removed didn't you? That's what mine was. I seem to recall talking with you about that before. I'm glad to hear you're doing well.