Curious-
For those of you taking Topamax- what dosage do you take for it to be effective? I'm taking 75 mg twice a day (primarily for migraines and aura's) but have had some breakthrough headaches lately, also visual spots and a couple of small sz's. I'm debating about asking the doc if we need to increase the dosage. What do you think?

Hi Stefie,
If I may ask how long have you been on the tompax? I know that when I was on the AED I started having more auras and cp sz. then my Dr. took me off the topamax because he found it was increasing my sz. The dosage I was taking was 250 mg. twice a day. I hope you have better luck with the drug than I did. Here's wishing you well and May God Bless You!

Sue

Hi Sue!
I've been taking the Topamax since September and have actually seen a dramatic decrease in headaches since starting it. The seizure/aura activity I've had has also decreased, only I notice that around my period it seems to pick up and of course with certain triggers (alcohol, if I'm around lots of noise or lights etc) and am wondering if maybe the dosage should be increased a bit more.
I take an antidepressant too and had to switch to a different one within the last month because the previous one was causing breakthrough headaches and seizure activity. I'm thinking that maybe the topamax dosage should be a little higher,but am curious as to what the therapeutic level is.

How did you react to Trileptal when you were on it? I had a terrible time on that stuff. I hope you are having more success on the meds you are on now, it can be a frustrating challenge to find the right cocktail can't it? Still, I wish I would have gone on the Topamax a few years ago and saved myself all of the headaches (and the liver/kidney damage from all the OTC meds I've taken that didn't give me relief anyways).

Take care!
stef

Hi Stef,
I'm glad that the topamax is working for you. Take my word when it comes to hormones changing nothing will help with the sz. activity and headaches and that's because the estrogen level is up which causes more excitment and the progesterone level is down and it's progesterone that helps calm the nerves.
I was doing pretty good on trileptal but just like tegretol I broke out with a rash so I didn't stay on it that long. Trileptal is very similar to tegretol as I'm sure you know. Have you ever tried taking vitamin B12 once a day? I have found that to do wonders reducing my sz. and I have fewer headaches.
Just like you certain colors bother me and trigger sz. but I have noticed that since I had my surgery a few yrs. ago the colors don't bother me so bad as they used to.
Here's wishing you only the best and May God Bless You!

Sue

Hi again Sue,
I haven't tried the B12 in several years (actually not since knowing I had e) so I may have to give it a try. I did notice that when I completely cut out caffeine and only drank water my headaches were drastically reduced (after the initial withdrawl of course). Lately we've been indulging for the holidays and the headaches have returned on a regular basis even with the Topamax (although reduced in magnituded compared to without it).

The definite seizures I've been able to identify since surgery have been involving either caffeine, alcohol, stress or lack of sleep (my usual triggers) and since surgery lights and noise (any over stimulation). Hormones of course are always an issue (I'm PCOS, just controlled pretty well with medication).

It's funny after almost 4 years why they would come back? They aren't nearly as bad as they were, but still I have to wonder why they have returned at all,there's no tumor regrowth..

Take care & Merry Christmas!

Stef - before I went to an 'university' hospital for the surgery I was taking 125 mg of Topamax per day plus Trileptal. After surgery the epi there said that was not a sufficient or "normal" (my word, not hers.... I'm having memory/word problems this morning) dosage of Topamax and I slowly dropped Trileptal and went to 200 Topamax.
(Of course right now I'm quickly working Trileptal back in and have clonazepam on hand.)
Anyhow --- my epi said that 200 was the lowest standard dosage for an adult.
Good luck!!

Hi Jingle!
Merry Christmas & Happy New Year! Thanks for the update on the Topamax. I was really curious as to what the therapeutic level was on the stuff. My doc was talking about working me up to 100 mg 2 times a day but thats all. I'm still thinking about checking with her to see if I should add a little more and step it up to that. I had another sz at a Christmas party a couple of weeks ago (can't remember if I already wrote that or not), not sure if had anything to do with the two martini's I'd had or not (I've drank before & nothing happened) so I'm wondering if the dosage may be a little low or if my threshold is really just that low. Motions and lights (or heaven forbid the combination of the two) really mess me up- even noise (not volume, but magnitude of multiple sounds like too many voices in a room at one time) can trigger one for me- strange huh?
How have you been feeling? I hope you're doing better, I read your other post previously and know how terrifying that feeling is. (((hugs)))

stef

Hi Sue!
You mentioned the colors affecting you, do you mean lights or specific colors? My neuro had asked me if there were any colors in specific that bothered me and I couldn't tell her anything in particular (hadn't ever paid attention th that specifically), just brightness, neon lights that sort of thing. Motion coupled with light is awful for me.

You mentioned that its better for you since your surgery- funny,it didn't bother me until AFTER surgery. Weird isn't it? I can't even watch fireworks now (selectively at least), movies can be problematic, concerts, lots of things can really be bothersome that weren't before. Really strange. I wonder why.

Hi Stef -- so good to "see" you again.
Isn't it strange that nothing has ever been a seizure trigger for me? BUT sound volume causes instant migranes, especially sound with a beat like music.
Flashing lights rarely bother me but what we call "clicking lights" -- sunlight coming through bare tree branches onto a highway -- causes instant migrane. Heavy traffic and that noise causes migrane. I'm now afraid of noise.

I take my B12 ~sigh~ C, calicum, E, CoQ-10, B6, Magnesium, Fish Oil, yadda yadda

What I need is something to help me get over feeling so incredibly awful about having these seizures again. I've really let this get me down. Oh well.

Jingle,

So sorry to hear you're having such a rough go of it. I know that feeling. After surgery you expect (hope) to have everything go so smoothly and not have them anymore and then WHAM! brick wall. I pray the meds work for you and you gain control. You hopefully will have much better control after surgery than before. I know I do. There was no such thing as seizure control prior to surgery ( not even slightly with the meds) and am doing much better now.

The clicking lights you mention is a big one for me (I'd call it flashing lights), strobe effect. It's still so funny that it didn't have any effect on me prior to surgery and now it does.
Noise is a true bother for me. I can handle really loud music (I mean really loud, but only if I am familliar with it and know what beat, tune to expect at all times). Any static at all and I'm climbing the walls, very bizarre. That's where the multitude of voices comes in. It doesn't even have to be very loud, but if I'm in a room with a bunch of people who are all talking at once it's like I can't think, then can't breathe and then uh oh, there I go, dizzy, sweaty, heart pounding and whoo, it may even be lights out. Again very bizarre.