Topamax - friend or foe?...

A lot of M patients complain of this highly recommended by medical profession antiseizure medication
as having impossible to tolerate side effects.

Or, due to these 'intolerable' side effects, they don't take Topamax long enough to even truly know whether
it would help with M or not, but still categorically deem it as "ineffectual".

What is it about Topamax that make it so hard to tolerate?

Well some of the side effects are as follows:

~dizziness
~fatigue
~drowsiness
~mental and physical slowing or delays
~difficulty with concentration or attention

http://epilepsy.emedtv.com/topamax/topamax-side-effects.html

It is definitely bothersome when one has to work or study or even simply function at home as caretaker
of the whole family while experiencing the above.

But, let's take a look at what is the standard procedure at the beginning of Topamax treatment:

* Week 1: 25 mg at bedtime
* Week 2: 25 mg, twice a day
* Week 3: 25 mg day dose, 50 mg bedtime dose
* Week 4: 50 mg, twice a day
* Weeks 5 - 7: maintain 50 mg, twice a day. If that isn't effective in reducing the frequency and severity of Migraine, progress through weeks 8 - 11 if necessary.
* Week 8: 50 mg day dose, 75 mg bedtime dose
* Week 9: 75 mg, twice a day
* Week 10: 75 mg day dose, 100 mg bedtime dose
* Week 11: 100 mg twice a day
* Weeks 12 - 18. Maintain 100 mg twice a day.
* If 100 mg twice a day doesn't give the desired results, he recommends tapering down and off Topamax rather than going to a higher dosage because the clinical trials showed no benefit to going higher.
http://www.healthcentral.com/migraine/medications/topamax-151847-5.html

It is easy to notice how the recommended titration is happening every WEEK.
And then two, and then three.
Also, it is recommended that the dose is divided into two to be taken one in the daytime, the other at bedtime.

And that's where the problem lies.
It simply doesn't work for quite a number for people.

Considering how tiresome side effects of Topamax are,
from my online friends' experience it shows that it is sometimes so much better to start at even lower dose
than standard 25mg.
If your dr allow to cut the pill in half, or if it's possible to order such a small ones- even better! - please, do it.

Then, once you've started Topamax you do NOT have to taper up every week, not even after two or three.
You can observe how your body reacts to it and titrate after, say after a month or so.
Remember, you weren't taking it at all before, so where's the rush????
(usually 4 weeks is good enough)

If you feel fine after a week - then by all means. But if you are confused, tired, nauseated- why rush into it?!
Give your body enough time to adjust, is all.
Once you feel you are ready for the next dose, increase in 25mg increments, and again give yourself
as much time as you think you need.
Do not taper up more than 25 mg any one time, and always, always give yourself enough time
to get used to to the higher dosage.
The higher the dosage, the longer it may take.

When I reached the 75mg dose it took me 6 weeks until I increased again to 100mg.

Granted, this way you won't know how well the Topamax is working on your M fast enough.
BUT, at least you WILL have a chance to know- eventually, as opposed to experiencing so severe side effects
that all you will want to do is immediately stop taking it, not caring whether it would work or not.

Now the second part of the standard procedure calls for taking Topamax twice a day - dividing a final dosage
-most commonly it is about 100mg -200mg per day -
into a daytime dose and a bedtime dose.

From my own experience, I found Topamax taken during the day makes me drowsy and loopy.
I much prefer to take it all at once at a bedtime. But I take only a 125mg per day.
This way I sleep through most of the 'full blast' - when it starts working, and wake up feeling much fresher and saner than if I divided it into two parts.
Also, being as forgetful as I am, it simply works better for me this way, too.

This part however - to take it once a day or twice a day - is totally individual thing.
Some people actually find T easier when taken twice daily, so one must experiment both ways, I guess before
finding their ideal way.

The beginning of the treatment, however - the titration - is not so indifferent.

It really pays to slow down the titration as much as it's needed. It worked for me very well! I hardly felt the negative s/e!
So, talk to your dr about that, don't be afraid to insist to take it at a slower pace.

And last but least - never ever stop taking Topamax suddenly. Always taper off, or you may get a seizure!
Even if you took it for a short time, the possibility of a seizure is still there,
so please talk to your dr or pharmacist if you want to get off the Topamax.

Risa

This is most excellent advise Risa. I do just want to throw in a warning from one of the 'intolerant'. If you get any suicidal thoughts, PLEASE, call your doc or neuro, and do whatever they say to safely, quickly, taper off.

Topamax cause me to have horrid panic attacks, and those led me down a nasty mental pathway, so I just wanted to throw that out.

Take care all!
-Sara

You both have given excellent advice. I would also like to tell folks that trying Topamax is worth it. There are success stories. I am one of them. Topamax has decreased the severity and frequency of my migraines. It didn't do it alone but it was definitely a factor. In fact, I have done so well over time with this, that my dosage was able to be decreased (so don't think you have to be at a high dosage forever.) For mosty migraineurs the therapeutic dosage seems to be in the 100 to 250 mg range. For me personally 75 was the magic number!

I too titrated up very, very slowly. I started at 25 mg but increased slowly and carefully. I take my Topamax at bedtime as it is less likely to interact with other medications then and I find that because it makes me sleepy, I do best taking it then. I also make sure I keep a good schedule -- getting to bed at around the same time each night and waking up around the same time.

Another thing that helps is that I eat an occasional banana for breakfast (with my oatmeal or eggs) as I find that it helps with the tingling side effect. In fact, I hardly ever get that side effect any more. Which is something else I should say -- some side effects will improve with time.

Of course, everyone's individual reactions may vary as it is with any drug, so you do need to watch it. But because this drug does help some of us, it is the reason doctors continue to prescribe it.

From the Polish M forum that I participate, Topamax also got favorable reviews from M patients
who didn't gave up and decided to withstand the s/e,
in the end they also agreed the T was one of the most effective M medication they've ever tried.

Of course, the tiredness, the mental fog in the beginning was hard to take. But once it stopped or diminished to the quite tolerable level - it was well worth it as it helped with M a lot.

And indeed, most patients needed on average a 100mg doses, only. Not that much.
I probably mentioned that, but if not I am taking currently 125mg once day, at a bedtime.
Is not that bad. I am forgetful but it's nowhere close to what was at the beginning.
I take over the horrid Ms I had any time!

Plus - what I forgot to mention Topamax is sometimes used as a mood stabilizer.
And indeed in my case it helped to balance my mood swings a lot. I am sorta of "bi-polar" on a daily basis.
I can cry at commercials, and cry then laugh in the same second. Quick to get angry and irritated, too.
Topamax evened all that quite nicely - an additional unexpected benefit.

Risa