Vodpop,

I was on Topamax for about 4 yrs. 75mg 2x day. This was for migraines with aura. I would still have break thru migraines. I think I became use to the Topamax. I then started having seizures for the first time this past Oct. Was taken off the Topamax and put on several different meds. Now on Keppra 500mg 2xday and Dilantin 130mg in morn and 160 mg at night. I had a lot of migraines after being taken off the Topamax? Maybe system just had to adjust.
I would ask your dr. about the dosage. It can be raised. The dose you are on now is low. Do you have any side effects though from the 75mg 2x day?
Good luck and don't be afraid to ask him/her.

Garney

Hi Garney!
Topamax has been the easiest drug for me so far (if that makes sense) to adjust to. I did experience a few side effects in the beginning, and do have a few occasionally, but they are minimal at best. Things like tingling in my hands/feet (which my neuro says can be helped by taking certain supplements she can tell me about if I want).
I've upped the Topamax on my own this last week and a half to 100 mgs at night and so far so good. It seems to be helping with the headache breakthrough, of course I can only do that for so long without actually having more pills before I have to refill them sooner than my insurance will allow. Hence, the should I call the doc and ask if she'll let me increase it to 100. I'm really skiddish about calling the doc unless I absolutely have to. I haven't even told her about the 'spell' in December (one of two 'sure things' that I know of in recent months). Is that reason enough to call? I'm not due to go and see her for another 2-3 months. I don't want to overreact over little things either.

I started Topamax as soon as it was available and crashed weight. I had to taper off as fast as possible and start over very slowly. Since then I've done just fine. When I increased so much in Oct. - up to 200 mg per day - I did get the very tingly hands and even feet and occasionally dizzy spells. That's ~whew~ all gone now.

Garney, I developed epilepsy in North Dakota and the "No Driving" there was one year. Here in Missouri it's six months. I was allowed to drive on Aug. 3 and ~sigh~ stopped again on Nov. 21.

In all honesty, the reason I'm not "over reacting over little things" is because of the driving thing. When we lived in Oregon I lost my drivers license due to the one and only gm I've ever had (there it's 6 months), and now that we live in Idaho (here it's 6 months or a year I don't remember) and I've started to have a few small sz's I can't possibly lose my license. We live in a small town outside of the largest town in the state. EVERYONE commutes and there's practically no public transportation here. It's truly pathetic. We've been here for almost five years and still don't have any real friends (my husband is self employed and I work in a very small office where everyone happens to live in another town) and all of our family lives out of state. See why I can't stop driving (not that what I'm experiencing is in any way a safety risk at this point, I just don't want it to progress to where it was and it was a safety risk before.
See what I mean? We're all in the same boat, but who's paddling?

Vodpop,

I understand how you feel about the driving. I have not driven since Oct. 2. My neuro would just keep saying, "Lets see how things go until I see you again." My daughter drives me to work every day, and a friend at the school where I work drives me home. I feel guilty, and so frustrated having to depend on other people for rides.
I think you should be up front with your Dr. and let him/her know that you upped the Topamx without any real side effects. As you stated, the insurance co. will not let you refill rx. again until certain date. That means you would interrupt your dosage, which could bring on seizure activity. I too had some side effects while on Topamax. The tingling feet and hands. This is mild compared to other meds.
I'm sure this is not an easy decision. For some reason we put our Dr. miles above ourselves, and think that we have no right to question or disagree with them. It is your body, you know how you feel and how it is responding. The added stress you feel about having to confront your Dr. is probably taking a toll on you also. I don't think you should wait another two or three mos., but that is only my opinion.
I wish you the very best in working this out.

Garney

I did it. I called the doc and asked to increase to 100 (and told her that the anti depressant I was taking was working really well to stabilize my moods- a side effect of the surgery I'm afraid). No problem. Didn't even bat an eye.
I should say that it was the assistant that I spoke with. My doc had originalyy told me that we would take me "up to 100 mg twice a day if necessary" when we first set out on this journey, but I've always been so hesitant to ask for meds. Something just seems so wrong with asking for it, know what I mean? I know there's nothing wrong with it, I need it, but at the same time, I have the mentality that taking anything is just wrong I guess, who knows why.

I feel better since I started doing it. No side effects so far. Just a few sleepless nights (I had forgotten about that part- Topamax wakes me up in the middle of the night and makes me tired in the am/day) until I get used to it. After a while all is fine again.

Vodpop,

Happy to hear you talked with Dr. Next time will be a piece of cake. I hope this combo does the trick for you.
I on the other hand, I had a bad day yesterday. My daughter finally had to call 911. I ended up having 5 seizures in a row. These were the worst ones I have had. Involved hand, arm, and leg jerking. Have never had this before. Now on 5th med change in a few months. Dr. is refering me to Dartmoth-Hitchcock med center for my testing.
I hope they find the problem

Have a good night, and great news


Garney