Dear tsmcpherson,
i am 40 years old and I had seizures since 8th till 18th year, then nothing till my 38th year. After that my seizures were connected with menstrual cycle. My neurologist at first tried with tegretol cr, but since there were no results, we decided to try neurontin. After terrible side effects (for three, four months) everything is much better now. My seizures, it seems so, are under control.

Hello there! My seizures went away in my late teens and they came back with my first pregnancy. Obviously the hormones. I have the best doctors/surgeon in the area (oh) and they have confirmed that there is no answer to the hormone situation. None of the meds could fully control my situation after the pregnancy.

Four months now after my surgery and I am almost off all of my meds.
Look into it if this is a possibility for you. You have been through enough.

Tsmcpherson,
for years I have asked my doc about the hormone connection.... But he doesn't agree. My seizures didn't get bad until I had my first daughter. I had none while pregnant the 2nd time, and after I had my hystorectomy I felt great and had no seizures for 4 months.
About your arm hurting..... The same thing was happening with me. I have been on all the meds and combos of meds the doc can come up with. I was on topamax once and lost alot of weight and my body just started to hurt mainly my left arm/shoulder area. I was taken off the topamax cuz of the weight lose (i look like a walking skeleton). Then after trying other meds the doc put me back on topamax and wanted me on a high dose to see if it would work better.
Well, during the time when I wasn't taking it my body didn't hurt so bad. But the higher the dose got (i got to 500mg a day) the worst my arm felt. It hurt to wash dishes or to fold laundry. Not to metion that I couldn't think straight. And had headaches all the time.
I couldn't take it no more.... The doc wanted me to keep uping the dose, but I couldn't function. So in may I weaned myself off the topamax.....
Since may I have only had 3 seizures.....A big difference from several a day. And my arm and body don't hurt no more.
My doc is mad at me, he keeps telling me that I need some meds..... But I have come to the opion that maybe the meds were making me have more seizures. All I know is that I feel great and I can think clearly and I have energy. And my quality of life has improved greatly. And its a chance i'm willing to take not being on meds.... I have been taking them for over 20 years with no success. And i'm not a surgery canidate either the spots I have in my brain can not be removed without causing more problems for me.
Jill

Jill,
interesting pregnancy. I had a girl first, too-with seizures. Did you have a boy or girl the 2nd time? Trying to see if there was any connection with the g/b hormone differences.

hi jill,

thank you for the info - i'm happy to hear your success.
I'm am totally off topamax now and taking trileptal which seems to be doing the trick at the moment. However, my doctor wanted me to have an mri due to the problem I was experiencing. The mri shows scaring which could be from an infection years ago, but wants me to do additional testing to rule out ms. I am going to get a second opinion first since he wants me to have a spinal tap and I have been told that is the old way to test for ms. The soga continues.....
Take care :d

hi ksbkrzi,

thank you for your response - what type of side effects did you incounter ? The side effects I have experienced with past medication has been to much for me to handle and live a normal life.

hi ksbkrzi,

thank you for your response - what type of side effects did you incounter ? The side effects I have experienced with past medication has been to much for me to handle and live a normal life.
Good luck I hope everything continues to go well.

Tsmcpherson,

neurontin was really nasty at first: I had troubles with "double vision", week knees, troubles with finding "right words", my concentration was at level of gold fish, there were panic attacks ... You name it. Also I was extremely sensitive when listening to the music (this was horrible to me since I help a lot to my husband who is composer) - I just had feeling that I hear "too much", like music will explode in my head any moment. My neurologist persuaded me to be patient for some three or for months. Since I have trust in him I decided to wait patiently, and really - after this period little by little everything began to change. Now I didn't have any troubles since march and finally my claustrophoby (fear of having attack out of home and far from my husband) is also slowly going away. Well, I work at home anyway ... But my doctor said that I reacted extremely badly, so all this is not something everybody experiences when at beginning of taking neurontin. Good luck!