Two of the most important things to know when deciding on which med is the best for a particular condition1: how likely is it to work and how long will it take.
The odds of a med working for a particular condition and how long it generally takes to work should be fairly easy to nail down, and not need to be summed up by the Internet shorthand YMMV (Your Mileage May Vary). Aside from it being hard enough to get an accurate diagnosis when brain cooties are involved, why is it so difficult to figure out if Topamax is right for you and how long it will take for you to know that?
- Because no one is quite sure exactly what causes various conditions.
- Which is further complicated when everything is a spectrum disorder (e.g. bipolar 1, bipolar 2, all the others planned for DSM-V).
- And they’re never really sure about how Topamax works in the first place.
- Plus, if you have more than one condition for which you’re taking one or more medications to treat, things get really complicated.
- None of which is helped by studies that produce contradictory results, if they aren’t questionable in the first place.2
Always remember: if your symptoms suddenly get a lot worse, call your doctor immediately. Any drug that makes your symptoms worse is a drug you probably need to stop taking as soon as possible.
See our page on the tests researchers use to measure the efficacy of medications, including during clinical trials to get FDA approval.
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.
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.
There aren’t a hell of a lot of consistent data on using Topamax for other forms of epilepsy, except for one - West syndrome. Topamax seems to be an effective first-line treatment for West syndrome, which means it meets the criteria of a greater than 50% reduction in spasm frequency for more than 50% of patients. In several of the studies half, or nearly half of the kids were spasm-free.
Topamax is probably not going to work by itself as a mood stabilizer. As an add-on, this really depends on what form of bipolar disorder you have, and even then the odds aren’t going to be great.
So if your bipolar symptoms can be best described as both:
- Really rapid cycling. You have at least one mood swing every 24 hours.
- When not cycling every day, or hour, or five minutes, you’re primarily manic (either euphoric or dysphoric) or mixed.
Or if you can answer yes to either of these:
- You’re male and your symptoms first appeared as mania in childhood or early adolescence and you get really aggressive or violent during dysphoric manias.
- You have epilepsy or migraines.
Then Topamax has a one-in-four chance of working for you. At best it’s one-in-three, and that’s if you are both a primarily-manic rapid cycler who is also epileptic, a migraineur, and/or had early-onset bipolar as described above. Otherwise it’s unlikely Topamax will do squat for bipolar disorder. Having another comorbid condition that Topamax successfully treats like binge eating or alcoholism can push the odds in your favor a bit, but if that’s all you have in addition to being bipolar3, Topamax might help somewhat for your bipolar symptoms, but you may still need a third med to get your symptoms completely under control, or something else entirely.
You’d think giving a med that causes weight loss to someone with an eating disorder is a bad idea, but Topamax is a great med for nocturnal sleep-related eating disorder (NSRED), or sleep eating, which is actually a sleep disorder like sleep walking, and is often misdiagnosed as night eating syndrome (NES), which is an eating disorder. But what does any of that matter to someone who can’t lose weight, can’t keep food in their fridge, and can’t figure out why that is happening? Only in deciding which med to try first. If it’s nocturnal sleep-related eating disorder, Topamax is probably the best med on the market, if you don’t have restless leg syndrome (RLS) that is. NSRED is often part of RLS, so you may need to adjust your RLS meds one way or the other. If what you have is NES, then you’ll probably want to try an SSRI first, and if you fail two of those, Topamax should be the next med. For NSRED Topamax is a first-line med, so you have a better than 50% chance of your symptoms getting at least 50% better. I can’t tell you any more than that because there aren’t enough data for me to nail it down any better. For NES the odds aren’t quite as good, and there aren’t enough data, but they’re probably a little better than one-in-three. Generic binge eating is about the same as NES.
There are clinical trials recruiting people to use Topamax to treat their alcoholism. Johnson & Johnson might be serious in getting FDA approval for Topamax to treat alcoholism. There isn’t enough money in NSRED to jump through all the hoops for FDA approval, but there’s plenty of money in alcoholism. There aren’t enough data for me to nail it down, but just for them to think about it means you have a better than 50% chance of your symptoms getting at least 50% better.
I could have told them Topamax wouldn’t work that well. It’s all too random. If you take Topamax for epilepsy, migraines, or maybe even an off-label application and you also smoke, see how long you can go without smoking. Don’t try to not smoke, just notice if there’s a difference in how long between smokes (or patches or chews or whatever) you can go before you feel like having more nicotine. Topamax will probably make no difference whatsoever, while some people will find they don’t want to smoke as much. And a few outliers like me, we don’t care one way or the other. The highest report has been from one pack a day to none, with the person essentially forgetting to smoke.
5. Topamax (topiramate) versus Other AntiepilepticDrugs/Anticonvulsants for its Approved Indications
- Low-dosage Topamax vs. Lamictal vs. placebo for migraine prophylaxis. Lamictal? For migraines? Actually Lamictal is used off-label all the time for headaches, proving the adage4 that whatever adverse event (side effect) an AED causes it can also treat, and vice versa. Or the other way around. In any event the results: Topamax wins, probably because Lamictal usually needs a higher dosage and is most effective for migraine with aura.
- Topamax vs. sodium valproate in chronic migraine. Topamax takes on sodium valproate, the
commieDepakote of everywhere outside of North America. The results: a tie. Worked and sucked about the same, and they recommend if you’re on one and it stops working or starts sucking too much, just switch to the other.
- Topamax vs. sodium valproate - the rematch. A slightly larger and longer-lasting study than the one above. The results: Statistically a tie, but Topamax did a little better. Nothing in the abstract about side effects.
- Topamax vs. Depakote in the preventive treatment of migraine. How does Topamax stand up to all-American Depakote? Once again, it’s a tie.
- Topamax vs. Zonegran in migraine prophylaxis. The way Zonegran works is similar to the way Topamax works, although Zonegran does more stuff. The results of this study: Zonegran reduced headache severity “significantly” more than Topamax did (but the numbers aren’t in the abstract). Other than that, there was no difference.
- Topamax vs. Botox for chronic migraine prophylaxis. This is a tough call on how you want to look better: thinner or fewer wrinkles? It’s funny because I’ve had three migraines my entire life, and I’ll bet none of them came close to sucking as much as any of yours. In any event, it’s also a tough call on deciding which med is better. Topamax worked a lot better, but three times as many people stopped taking it than the Botox (7 vs. 2 in this huge study of 60). Ultimately Topamax wins, because more people stopped taking Botox than Topamax because their med didn’t work, and Topamax worked better.
- Topamax vs. Botox - the rematch. Like the study above, this one was small, but didn’t last as long. Unlike the one above, I’ve got the full text. The results: a tie. What’s striking in this study is Botox sucked more. While statistically a tie, at the end of the 12 weeks more people taking Botox had “major” side effects, including cognitive effects. Every now and then you get an anomalous outcome.
- Topamax vs. propranolol in migraine prophylaxis. The results: I didn’t know propranolol was that effective in preventing migraines in the first place. Topamax kicked its ass, but still, if you can’t deal with the side effects of other meds, there’s always propranolol.
- Topamax vs. flunarizine in migraine prophylaxis. Flunarizine is a calcium channel blocker that is currently unavailable in the US. The results: They worked about the same, and Topamax sucked more.
- Topamax vs. propranolol vs. flunarizine in migraine prophylaxis. This is Dr. Sagar Singhal’s dissertation for his degree in pharmacology, so it’s over 100 pages long. It also contains an incredible amount of information about migraines and migraine treatments. If every study were written like this, I’d still complain for one stupid reason or another, mainly about how no one needs to read Crazymeds because the studies and trials make more sense. In any event, the winner is: flunarizine! Suck it, America. Topamax came in second and propranolol third. Topamax had more, and more severe side effects except, of course, people lost weight instead of gaining a few kilos. And that might be the reason why more people rated Topamax as an “excellent” drug than flunarizine, even though flunarizine was superior.
- Topamax vs. Lyrica in the prophylaxis of chronic daily headache with analgesic overuse. The idea of taking a drug to the prevent headaches that occur because you take too many painkillers gives me a headache. There is something inherently wrong with that equation, but really I don’t know what it is. In any event, the results: a tie. This is one of the few studies I’ve read where the numbers really are close to identical. There’s nothing in the abstract about side effects, but it’s a given as to which drug sucked more.
- Topiramate versus amitriptyline for prevention of episodic migraines. I’m surprised I can’t find more Topamax vs. TCA studies. The results of this one: a tie. They worked about the same, and they sucked about the same, albeit in different ways. The people taking the meds preferred Topamax for quality of life reasons, and you probably know why.
- Topamax vs. subcutaneous histamine. Histamine desensitization is an experimental therapy when it comes to migraines, or anything else for that matter. How does it stack up against Topamax? Damned if I can tell from this abstract. They both worked, but it’s not really clear how well each med did, or how they compared with each other. I infer from that the histamine desensitization bombed, but that could just be my cynicism getting the better of me.
- Topamax vs. relaxation therapy vs. exercise for migraines. No, that isn’t an aphasia moment. Relaxation therapy has been used to treat migraines since forever. 40 minutes of exercise three times a week is new, to me at least. The winner: a tie? I can’t understand the statistical method they used, and they write way too much about oxygen intake as well as a philosophical discourse about side effects instead of providing concrete numbers on how well each method worked for the whopping 30 people in each group. Hey, Europe School, here’s a clue about side effects: don’t ramp up study participants to 200mg a day of Topamax (two, possibly four times as much as they needed to take) so quickly. As with the study above this reeks of trying to bury the failure of the treatment you wanted to win in obfuscated stats and language.
- Topamax vs. acupuncture for migraines. This is one study where the double-blind protocols would be kind of difficult to do5. The winner: acupuncture! It was more effective - average days with headaches cut from 20 days to 10 vs. 20 to 12 with Topamax. As you could probably guess, acupuncture sucked one hell of a lot less, with only two people (6%) complaining about side effects, vs. 22 people (66%) in the Topamax group.
- Topamax vs. Depakote vs. Lamictal for generalized and unclassifiable epilepsy. This study also paid a lot of attention to idiopathic epilepsy, where doctors had no idea why someone was having seizures. The results: Depakote wins! Lamictal sucked the least! Topamax loses big, by being the least effective and sucking the most. The guidelines for the titration of the meds weren’t given, so there’s no way of telling how much influence that may have had as far as side effects were concerned. That Depakote is the best med for idiopathic generalized epilepsy is no surprise.
- Topamax vs. Tegretol vs. Neurontin vs. Lamictal vs. Trileptal for partial epilepsy. Practically every AED in the US is approved to treat partial seizures, and for some of them it’s the only thing they have approval to treat by themselves (monotherapy), so figuring out which one is the best is pretty daunting. Especially since there are a buttload of partial seizure types. For the seizure types the people in this study had the winner is: Lamictal! It’s more effective than Tegretol and even sucks less than Neurontin. As with the study above, the titration guidelines are not available, but we can infer that the Lamictal titration must have been rather sane based on this: