Topamax Dosage

[vodpop]

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?

[Porkette]

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

[vodpop]

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

[Porkette]

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

[vodpop]

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!

[jingle]

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 :Sigh: 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!!

[vodpop]

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

[vodpop]

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.

[jingle]

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~ :p 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.

[vodpop]

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.

[Garney]

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

[vodpop]

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.

[jingle]

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.

[vodpop]

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?

[Garney]

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

[vodpop]

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.

[Garney]

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:confused:

Have a good night, and great news


Garney