Brand & Generic Names; Drug Classes
|US brand name: Topamax|
|Generic name: topiramate|
|Primary drug class: AntiepilepticDrugs/Anticonvulsants|
|Additional drug class(es): Migraine/NeuropathicPain|
Approved & Off-Label Uses (Indications)
Topamax’s US FDA Approved Treatment(s)
Epilepsy - by itself or with other meds, for adults & children. Migraines. Qsymia is topiramate combined with phentermine, and is approved to treat obesity.
Uses Approved Overseas but not in the US
Off-Label Uses of Topamax
- Bipolar disorder
- Eating disorders - especially sleep eating. While more effective than Zoloft, the side effects suck more.
- Alcoholism. Johnson&Johnson might be going for FDA approval on this one.
- They’ve been doing the randomized clinical trials.
- They’re pushing how Topamax works to control physical health.
- Read the trials below on diabetes & obesity for more on how well Topamax works for glycemic and lipid control.
- There are some phase III trials listed at clinicaltrials.gov, but as they are all in Thailand I can’t tell if those are J&J’s or not.
- Weight loss - especially for weight gain caused by other crazy meds.
- West Syndrome.
- Pathological gambling
- Dravet syndrome
- Cerebellar ataxia and tremor in multiple sclerosis
- Hypokalemic periodic paralysis
- Exploding head syndrome: the sleep disorder.
When & If Topamax Will Work
Topamax’s Usual Onset of Action (when it starts working)
Anywhere from one day (don’t get your hopes up, but it happens) to a month. Three months is the longest wait time given, but unless you’re desperate (i.e. nothing else worked) you shouldn’t wait that long if Topamax has done nothing for you.
Like most everything with epilepsy it’s complicated. Two weeks to a month is about the soonest most people can hope for, as that is how long it takes to work up to 100mg a day. A lot of it depends on your seizure activity and what sort of titration schedule you and your doctor work out. If you start flopping around like a fish out of water, with no warning, on a daily basis, your doctor will most likely want to start you at 100mg a day and ramp you up to 200–400mg a day as quickly as possible. The side effects will really suck, but suck less than daily seizures. If you have the luxury of a slow titration Topamax is either going to stop, or mostly stop your seizures within four to six weeks, two months at the most, or it’s time to find another drug.
Likelihood of Working
Really good, as far as these things go, which is probably why Ortho-McNeil is all about Topamax for migraines these days. There are slight variations depending on the type and frequency of migraine involved, but it mostly maps to the results from clinical trials: at least half of the people who take Topamax have the number of days they get migraines cut in half. Actual response rates are higher, in that Topamax will do something positive for 75% of people who take it, but not necessarily enough to justify dealing with the side effects. So it works out to 50–60% of people who take Topamax for migraines can keep taking it for as long as they need to.
Not only that, around 40% of people for whom Topamax works are taking 50mg a day, or even 25mg a day. As side effects are typically dosage-dependent (the more you take, the more likely it is you’ll have a side effect and/or the worse it is, or it hangs around longer) with Topamax, people taking 25–50mg a day aren’t dealing with much in the way of side effects. At 100mg a day Topamax may suck as much as other headache treatments, at 50mg a day Topamax doesn’t suck at all.
If you experience paresthesia (the pins and needles feeling in your extremities), that’s a good sign. It might mean the Topamax is more likely to work than not.
It’s complicated, of course. Topamax works best if it’s the first med you’ve taken for epilepsy, and you’ve gone to see a doctor as quickly as your insurance and/or circumstances let you. Most doctors, who tend to be rational people, want you to have as few seizures as possible, with as much time between them, until you have none at all. That means working you up to a target dosage of 400mg a day as quickly as possible, which is where more than half the people who take Topamax have the highest rate of seizure reduction. The problem is, a rapid titration means more and more intense side effects, so most people who start taking Topamax aren’t taking it six months later. Fortunately the exception is when treating people who had their very first seizure. 100mg a day seems to do it, and working up from 25mg a day to 100mg a day can be tailored to your circumstances, and not a one-size-fits-all schedule. So for new onset epilepsy, having either partial onset or primary tonic-clonic generalized seizures, you’re in also in coin-toss territory, with around a 50% chance of Topamax reducing your seizure frequency by at least 50%. Like all AEDs Topamax will be better for some types of seizures than others. Topamax does especially well for nocturnal frontal lobe epilepsy. Topamax doesn’t do all that well if you don’t respond to other treatments. If other meds haven’t worked, talk to your doctor about trying Keppra, which has a better success rate for people who have had no luck with lots of other drugs. Topamax can work for people with refractory partial and generalized epilepsy, but it has the same rate of success as most other meds - not very good. Otherwise people wouldn’t be refractory to them. Duh.
As an add-on for Lennox-Gastaut you’re looking at about a one-in-three chance Topamax will help enough for you to notice. For Lennox-Gastaut those are decent numbers.
One good thing about Topamax: if you decide to try something else because the side effects are more than you can deal with, go ahead, as Topamax usually works as well, or at least nearly as well, as it did the first time you took it. With one exception. You won’t lose any weight the second time around. Even if you do, it won’t be as much. Now if weight loss was actually a bug and not a feature, then taking a medication holiday for a couple of months should fix it. Although in my experience those of us who don’t need to lose weight are the ones who usually do.
Taking and Discontinuing
How to Take Topamax
Here are OrthoMcNeil MS-Passport’s recommendations for Topamax’s most popular uses
For adults with migraines: Migraine (2.2) 25 mg/day administered nightly for the first week. The dosage should be increased weekly by increments of 25 mg. Dose and titration should be guided by clinical outcome. Recommended Dose: 100 mg / day administered in two divided doses. — the Topamax Full US Prescribing Information
- Start with one 25 mg tablet or capsule a night.
- If you need more after the first week (and you probably will), take one 25 mg tablet or capsule in the morning along with the one at night.
- Wait another week. Increase by another 25 mg, but only if you need to. Morning or night is up to you.
- Wait one more week before increasing that final 25 mg - again, only if you need it - so you’re taking 50 mg in the morning and 50 at night.
- After another week or two talk to your doctor about how well Topamax is working at whatever dosage you’re taking.
Monotherapy for adults and pediatric patients ≥10 years with epilepsy: 50 mg/day in two divided doses. The dosage should be increased weekly by increments of 50 mg for the first 4 weeks then 100 mg for weeks 5 to 6. Recommended Dose: 400 mg / day in two divided doses. — the Topamax Full US Prescribing Information
- Week one take one 25 mg tablet or capsule in the morning and one at night.
- Week two take two 25 mg tablets every morning and night.
- Week three take three 25 mg tablets every morning and night.
- Week four take four 25 mg tablets, or one 100 mg tablet every morning and night.
- Week five take 150 mg every morning and night.
- Week six take 200 mg every morning and night.
For migraines: Now that OMJHF finally decided to agree with me about the correct target dosage being the one where your symptoms stopped, I can’t add anything to the English-language translation of their recommendations.
For epilepsy: Depending on the type and frequency of seizures you have, you may or may not have the luxury of stopping, or at least slowing the titration when your seizures stop. That’s for you and your neurologist to have a what could be a very quick or very long conversation about.
How to Stop Taking Topamax (discontinuation / withdrawal)
OrthoMcNeil-Janssen Hunger Force Rainbow Neurologics now agrees with us. Per the PI sheet, unless you need to stop taking Topamax due to a severe adverse reaction, you should reduce your dosage by 25–50mg a day every week.