Topomax

US Brand Name: Topamax
Other Brand Names: Epitomax (Finland, France)
Topamac (Argentina, Germany, Greece)

Generic Name: topiramateOther Forms: Sprinkle Capsules

Topamax is an anticonvulsant

What are Topamax’s FDA Approved Uses:

Topamax is used by itself or with other meds to treat a variety of forms of epilepsy.  These include:

  • Simple partial seizures – you’re still awake (more or less), with symptoms such as one or two limbs spazzing out or wacky visual or other sensory distortions.  Think Alice in Wonderland, as Lewis Carroll must have had some serious temporal lobe issues.  The fist link will take you to a better explanation.  For a really detailed explanation of what a simple partial seizure is, click here.
  • Complex partial seziures – the people around you think you’re just acting out to get attention.  In reality you have no control over what’s happening.  Again, click there for the basics, click here for what neurologists think about this type of seizure.
  • Generalized tonic-clonic – the classic definition of a seizure, when you’re completely flopping all over the place like a fish out of water.  For the neurologist’s view, click here.
  • Lennox-Gastaut syndrome.  If your child has this, my heart goes out to you.  If you don’t know what it is, consider yourself fortunate.  See also Keppra, which has tested well for Lennox-Gastaut.

Topamax is also approved to treat migraines.  And please, people, a migraine isn’t a really bad headache.  If you aren’t brought to the ground by the nausea, the sensitivity to light and sound, and the jackhammers that have taken up residence in your head for at least a couple of hours, you don’t have a freaking migraine.

What are the Off-Label Uses of Topamax:

Topamax is also used for:

  • Adjunctive treatment for adults with Bipolar Disorder
  • and Adjunctive treatment of children and adolescents with Bipolar Disorder.  so when used with other meds it tests well.
  • In Monotherapy for Bipolar Disorder,  and another study here  it’s not that great used by itself  for random bipolar patients, but more about that in the comments section.
  • Cluster headaches.  Although from that study and some case histories it looks like you want to try the standard treatments first. Topamax will do its usual thing of working great for half the people and really messing up the other half.
  • Eating Disorders.  See also the abstracts for these two more recent studies hereand here, both of which confirm the first.
  • Vanity Dieting, a.k.a. Topamax for weight loss when you’re not mentally interesting, where it failed utterly in the two clinical trials for dieting and it continues to mess people up to use it for dieting purposes.
  • Fibromyalgia – anecdotal evidence only.  I don’t have enough to tell you one way or the other.
  • Depression (when used for obesity).
  • PTSD.
  • Alcoholism.
  • Sleep Disorders, including combined sleep-eating disorders.
  • Autism, mostly anecdotal evidence only, including mine, and usually dealing with sensory integration.  So don’t force it down your kids’ throats.  It’s an adult thing.  Either it helps deal with sensory integration or it doesn’t.
  • Healing old external scars (such as from self-injury).  Mixed reports from anecdotal evidence, but mostly positive.

Topamax’s pros and cons:

Topamax’s Pros: It’s the currently the only “modern” anticonvulsant approved by the FDA that you can take by itself to treat tonic-clonic (or clonic-tonic as the case may be) complex partial seziures and simple partial seizures. By “modern” Ortho-McNeil means “approved after 1995 and sucks less than Depakote.”  I’m getting lots of e-mails and reading numerous reports of people getting relief from their migraines at just 25mg a day.  You’re more likely to lose weight than gain weight (although this is a bug, not a feature, for me and a few other people). The best med on the market for temporal lobe dysfunctions.  It really helps with the sensory integration problems in autism.

Topamax’s Cons: If you don’t have a temporal lobe dysfunction or problems with other parts of your brain that Topamax hits, or you’re at the wrong dosage, it will make you dumber than a box of rocks. The kidney stones aren’t much fun.  Because it was newly approved for migraines and can work at a low dosage without all the sucky side effects of Depakote (Who cares if you’re stupid as long as you’re not fat and don’t need blood work?) the pharmaceutical reps are pressuring the doctors to prescribe it to anyone and everyone with bad head pain, even if it’s not appropriate.  New Approval Syndrome can thus screw people by prescribing  them the wrong drug for their migraines.  Worse yet when they may not even have migraines, and perhaps have trigeminal neuralgia, for which Tegretol is more appropriate.

Topamax’s Typical Side Effects: The usual for anticonvulsants. A pins & needles effect that usually goes away after no more than a week or two. Weight loss and appetite suppression – but please note that not everyone gets this side effect. Sodas and other carbonated beverages will utterly taste like ass, so you may as well give them up now if you’re considering Topamax. Memory loss, aphasia (weird words coming out in place of what you meant to say or write), word find problems (not being able to recall the names of people, things or concepts), and a general cognitive impairment that has earned this drug the nicknames “Stupamax” and “Dopamax.” As Topamax typically makes you really sleepy and has a long enough half-life, you can usually get away with taking it all at bedtime.

For tips on how to cope with these side effects, please see our side effects page.
These aren’t all the side effects possible, just the most popular ones.

Topamax’s Not So Common Side Effects: Dry and/or itchy eyes along with assorted vision problems. Topamax also has a warning for rare forms of myopia and glaucoma, so if you get any sort of visual weirdness, have your eyes checked immediately! Fortunately discontinuing Topamax usually takes care of these issues, but you can’t let your doctor just blow it off as an eye thing. You may find yourself not able to drink coffee any more, so be prepared to quit the bean. Because it does hit the temporal lobes so hard you can get a zombification effect that is typically experienced only with antipsychotics. Unlike the antipsychotics it’s not such a sure thing it will go away in a matter of a couple of weeks. And since the olfactory bulb is wedged in that neighborhood, food in general, and not just carbonated beverages, may not taste quite the same. If you were experiencing frequent, intense déjà vu or jamais vu you might experience the other as the damaged temporal lobe starts working correctly.
These may or may not happen to you don’t, so don’t be surprised one way or the other.

Topamax’s Freaky Rare Side Effects: Tongue paralysis. Combine that with not being able to get the right words out and you’re all set to apply for the position of village idiot. There have also been a couple of men who started lactating after taking Topamax.
You aren’t going to get these. I promise.

For all side effects read the PI sheet  Hell, read all of them below and really indulge your cyberchondria.

Interesting Stuff Your Doctor Probably Won’t Tell You: Topamax is the worst when it comes to birth control pills. If you’re taking The Pill for any reason at all and you start Topamax you need to contact your OB-GYN immediately, as you may need a new prescription. It depends on the type and strength of oral contraceptive you’re taking. It’s all spelled out in the PI sheet. What’s not in the PI sheets of either Topamax or various oral contraceptives is that combining the two often produces wacky hormonal effects that will make you feel like you’re a teenager again. The most common of which is acute acne.

Topamax may encourage you to stop smoking. Maybe not as well as Zyban (bupropion), but it certainly made me lose my taste for cigars, for about two years at any rate.  I’m now a sometimes daily pipe smoker.  But, hey, it was something.  I smoke one bowl of pipe tobacco a day and every once in a great while have a cigar, so it certainly moderated my tobacco use.  I will occasionally stop smoking, and when I do it’s no big deal.  I quit and I just don’t care one way or the other.

Did you beg for Topamax to lose some weight when taking lithium?  On one hand it could help with bipolar symptoms by hitting voltage channels in a different way, or it could hurt by hitting voltage channels in a different way.  In any event, be prepared for more frequent blood draws for lithium levels.  A study referenced in “Topiramate:  drug interactions”  by Barry E. Gidal PharmD Antiepileptic Drugs has Topamax lowering lithium levels 11% to 16%.  Yet a case report has them being raised, and that’s what made it into the Drug-Drug Interactions checker.  So neither, either or both could happen to you over the course of time.

Topamax sprinkles were designed for caregivers to slip to people unable or unwilling to take pills. It’s not so blatant on the PI sheet Ortho-McNeil publishes online now, but one I have shows you how to open up the capsule and mix it into food so it’s nice and hidden and somebody doesn’t know they’re taking their medicine.   This inspired Mouse and I to come up with the Anti-Psychotic Sundae:

  • Two scoops ice cream, sherbet or sorbet, of the patient’s favorite flavor, but something that mixes well with an orange-flavored syrup.
  • Dosage-appropriate amounts of Depakote (divalproex sodium) and Topamax sprinkles.
  • Dosage-appropriate amounts of lithium citrate syrup.
  • Two maraschino cherries, one red, one green.

Pour lithium syrup over scoops of ice cream (or whatever).  Top with Topamax and Depakote sprinkles.  Place one of each type of cherry on top of each scoop of ice cream.   Mellow-out and enjoy.

Topamax’s Dosage and How to Take Topamax: The initial dose of Topamax (topiramate)is 25-50mg a day, increased by 25-50mg a day each week as needed until you reach the maximum of 400mg a day. Usually divided into two doses, but you can often get away with taking it all at night.  Topamax’s half-life and peak-plasma figures will let some people get away with taking it all at night, but it all depends on your pattern of seizures and how the med works out for you.  In this respect Topamax (topiramate)is flexible.  You and your doctor can play around with the scheduling of your doses.  Although rated for 1,000mg a day in cases of extreme seizures, Ortho-McNeil has found little in the way of therapeutic value above 400mg a day.

For it’s FDA-approved usage as an anti-epileptic it’s most effective when the dosage is divided into two 200mg doses.

Personally I’m fond of taking it four times a day because I get the most benefit out of the peak plasma action, with three 25mg doses during the day and the remainder at night.   From all of the anecdotal evidence and studies I’ve collected, dividing the doses is the way to go.  Taking it all at night at first might get you past the initial lethargy, but you really should go for some of it during the day.

For migraines the target dosage is 100mg a day, split into two 50mg doses.  Starting at 25mg at night and increasing by an additional 25mg a day each week.  That’s more like it.  I’ve read of people getting plenty of relief at 25mg a day for a lot longer than a week.  I’m all about holding at whatever dosage you’re at when the symptoms stop.

As a bipolar medication it depends on what flavor of bipolar you have. In Bipolarland you don’t always need the full 400mg a day, and you can often get away with taking it all at bedtime. However, if you’re subject to ultradian rapid cycling (where you flip between extremely manic and severely depressed several times a day, even several times an hour) as I am, it’s best to take 25-50mg first thing in the morning, 25-50mg in the afternoon, and the balance of your dosage at bed time. If you have any breakthrough periods of ultradian rapid cycling, talk to your doctor about taking an extra 25mg of Topamax (topiramate)every hour on the hour until you’re ready to go to sleep that day. You’ll find the ultradian rapid cycling abates pretty damn fast that way, sometimes in a matter of three or four hours.

As always I’m for a slow titration.  Unless you’re seriously flipping out or seizing all over the place, start at 25mg and increase by 12.5 to 25mg a day each week as required until both symptoms and side affects abate.  Topamax (topiramate)is extremely dosage sensitive and you’ll find that side effects will actually decrease in intensity, if not go away, once you hit your proper dosage.  So as odd as that reads, it will take an increase in your dosage for some side effects to go away.  Presuming, of course, that Topamax (topiramate)is the right medication for you.

For all other applications, I have no idea if it’s better to divide the dosage or take it all at night, let alone what the proper dosage is, other than when the goddamn symptoms stop.  Check the studies that I have links to in the off-label usage section.

Days to Reach a Steady State: Four days.
When you’re fully saturated with the medication and less prone to peaks and valleys of effects. You still might have peaks of effect after taking many meds, but with a lot of the meds you’ll have fewer valleys after this point. In theory anyway.

How Long Topamax Takes to Work: Like all anticonvulsants Topamax (topiramate) will start to work best once you reach the proper dosage, although you’ll start to feel something once you reach a steady state. Topamax (topiramate) is especially tricky about being at the proper dosage, as getting too much or too little can really hose things for you.

Half-Life & Average Time to Clear Out of Your System: Topamax’s half-life is 21 hours, it’s out of your system in four to five days.

How to Stop Taking Topamax: Your doctor should be recommending that you reduce your dosage by 25-50mg every four to five days, based on the 21 hour half-life, if not more slowly than that. If you’re taking another anticonvulsants and you’re at 400mg a day, Ortho-McNeil states you can reduce the dosage by 100mg a day every week.   For more information, please see the page on how to safely stop taking these crazy meds.

Like any anticonvulsant, if you’ve been taking Topamax (topiramate) for more than a couple months and you’re up to or above 200mg a day you just can’t stop Topamax cold turkey if you’re not at the therapeutic dosage for another anticonvulsant that you know works for you, otherwise you risk partial-complex, absence seizures or even tonic-clonic grand mals, despite your never having had a seizure disorder before!  The risk is worse if you’re taking a lithium variant, and/or any antidepressant, especially Wellbutrin (bupropion).  Anyone with a history of a seizure disorder who needs to stop taking an anticonvulsant cold turkey needs to be discussing that with two neurologists and not getting your information from some stupid web site.  Get off your computer and start making appointments!
If you’ve worked your way up to a particular dosage, it’s usually best to spend this many days at the next lowest dosage before going down the next lowest dosage before that and so forth. This is the least sucky way to avoid problems when stopping any psychiatric medication. Presuming you have the option of slowly tapering off them.

How Topamax Works In Your Brain:  Topamax (topiramate) works using methods popular with anticonvulsants.  It just concentrates this activity in your temporal lobes.  That’s the main reason why it’s a wonder drug for some people and a cognitive nightmare for others.  If your temporal lobes aren’t messed up (e.g. you don’t experience flat-out rage, intense and frequent déjà vu and/or jamais vu, you smell things that aren’t there or a host of other symptoms of temporal lobe dysfunction that a neurologist is often more qualified to determine than a psychiatrist) then Topamax may not be the right med for you.  Of course, that’s just for epilepsy and bipolar.  When it comes to all the other off-label applications, I honestly don’t have a clue.  What the temporal lobes have to do with those other disorders or where else Topamax is doing its thing – beats the hell out of me.

Anyway, here’s what Topamax does for you:

  • It messes with your calcium and sodium voltage channels.  Messing with voltage channels are one way anticonvulsants deal with reducing the hyperactivity in your brain that results in seizures and/or bipolar mood swings.
  • It makes you really receptive to the GABA you have in your brain.  Not barbiturate-level receptive, but pretty damn receptive.  That’s why it knocks you out and leaves you feeling pretty worn out all day.  It’s also why it’s an effective anticonvulsant and half-decent mood stabilizer.  GABA is a key neurotransmitter in quelling bipolar and epileptic hyperactivity.  It’s also quite useful in dealing with various pain issues like migraines.
  • It gets kainate to work on the glutamate receptor, but doesn’t work on glutamate itself.  I’m not too clear on what kainate does for you.  Glutamate is a neurotransmitter that is getting a lot of study lately, not just as an anticonvulsant, but as an antidepressant and antipsychotic.
  • Finally it inhibits some isoenzymes of carbonic anhydrase (CA-II and CA-IV). Although not particularly strong in this regard and the floor is open to debate about how much it does for you when it comes to epilepsy and/or bipolar, it might be why some of the off-label applications work.   What I do know is that it’s why you get kidney stones.  So check for this particular feature of any other drugs you might be taking, as that would dramatically increase your chances for kidney stones.

Chances Topamax Will Work and How Topamax Compares to Other Meds:  From the clinical trials of people suffering 60 or more seizure events a month.  About 40% adults with partial onset seizures taking 400-600mg of Topamax (topiramate) a day, along with another anticonvulsant, will see a 50% or better reduction in their seizure activity.  The average reduction in seizure activity is a little under 50%.

Kids with generalized tonic-clonic seizures and  Lennox-Gastaut Syndrome where given about 6mg  per kg.  So if you weighed around 150 pounds you’d get 400mg a day.  The dosages used were  125, 175, 225 and 400mg a day for the tonic-clonic seizures.  The average reduction in seizure activity was 56%, with 56% of the kids seeing their seizure activity at least cut in half.  The numbers weren’t as good for Lennox-Gastaut, but with that syndrome any improvement is probably worth dealing with Topamax.

Here are the results from the clinical trials:

 

TABLE 2 Efficacy Results in Double-Blind, Placebo-Controlled, Add-On Trials
Target Topiramate Dosage (mg/day)
Protocol Efficacy Results Placebo 200 400 600 800 1000 »6 mg/kg/day*
Partial Onset Seizures: Studies in Adults
YD Number in group: 45 45 45 46
Median reduction in seizure activity: 11.6% 27.2% 47.5% 44.7%§
Percent with better than 50% reduction in seizure activity: 18% 24% 44% 46%
YE Number in group: 47 48 48 47
Median reduction 1.7% 40.8% 41.0% 36.0%
Responders 9% 40% 41% 36%
Y1 Number in group: 24 23
Median reduction 1.1% 40.7%
Responders 8% 35%
Y2 Number in group: 30 30
Median reduction -12.2% 46.4%
Responders 10% 47%
Y3 number in group: 28 28
Median reduction -20.6% 24.3%
Responders 0% 43%
Partial Onset Seizures: Studies in Pediatric Patients
YP number in group: 45 41
Median reduction 10.5% 33.1%
Responders 20% 39%
Primary Generalized Tonic-Clonic‡‡
YTC number in group: 40 39
Median reduction 9.0% 56.7%
Responders 20% 56%
Lennox-Gastaut Syndrome§§
YL number in group: 49 46
Median reduction -5.1% 14.8%
Responders 14% 28%
Improvements in seizure severity¤¤ 28% 52%
* For Protocols YP and YTC, protocol-specified target dosages (<9.3 mg/kg/day) were assigned based on subject’s weight to approximate a dosage of 6 mg/kg/day; these dosages corresponded to mg/day dosages of 125, 175, 225, and 400 mg/day.
‡‡ Median % reduction and % responders are reported for PGTC seizures.
§§ Median % reduction and % responders for drop attacks, i.e., toxic or atonic seizures.
¤¤ Percent of subjects who were minimally, much, or very much improved from baseline.

So the above results are good, if the trials were a bit small.  But you try finding people having two or more seizures a day who were willing to mess with their meds.
Comments: Approved by the FDA to treat epilepsy in 1996, I would be dead, institutionalized, in jail or worse without the benefit of Topamax (topiramate). I’m one of the people that just loves Topamax (topiramate), despite the kidney stones and having it turn me into an idjit on psychiatric drugs. My seizure activity is gone, gone, gone. No more absence seizures (at least Mouse, the only person in the world kind enough to tell me when I was having the damn things, says I haven’t been having any), no more simple partial events and no more rib-cracking, concussion-inducing, pants-wetting tonic-clonic grand mals. My bipolar activity is way under control. As long as I remember to take every dose every day I’m fine. If I forget a dose the results have been everything from a couple days of hypomania to a day-long mixed state. Topamax (topiramate)put an end to the violent, intrusive thoughts that Risperdal (risperidone) just wasn’t able to handle alone. Topamax (topiramate)keeps me from punching holes through the walls of my house and smashing furniture, dishes and computer equipment into pieces.
Topamax (topiramate)is the key part of my cocktail, but it is an adjunctive medication. It works best in combination with other medications, although some people can get away with using it as monotherapy, for bipolar, epilepsy or whatever. There’s been at least one small study using Topamax at lower dosages as monotherapy for epilepsy that showed it can be effective. More research needs to be done along those lines. The odds still are that in treating bipolar disorder and/or epilepsy, Topamax needs to be combined with another medication. This is usually because such problems do not reside entirely in one’s temporal lobes, where Topamax does most of its work.

Unlike valproates such as Depakote (divalproex sodium) that also mess with your GABA, you don’t want to eat more. Usually it’s the opposite, it makes you want to eat less and even causes you to forget to eat! I need a schedule to eat meals.

This is why everyone clamors for Topamax – because of its weight-loss side effect, a side effect that not everyone gets. Sure, I’ve lost twenty pounds I could ill afford to lose since starting this med, but that side effect sucks less than the hell of ultradian rapid cycling, which Topamax has stopped dead in its tracks. But it’s not just me, there are studies out there showing Topamax to be effective for ultra-rapid cycling. OK, we understand that weight is a big fucking deal for some people. Eating disorders, morbid obesity, dysmorphic body image and the societal pressure to be thin can depress the hell out of someone who has gained a shitload of weight thanks to Depakote (divalproex sodium), Remeron (mirtazapine) , Zyprexa (olanzapine) or an SSRI. Besides all of the other side effects and the fact that Topamax may not even reduce your appetite, if you’re on a medication that works, Topamax could fuck if up! Try something else first, please. If weight is seriously messing with your physical and mental health and you don’t have symptoms of temporal lobe disorders, Topamax should be the weight loss treatment of last resort if your other drugs are working. Of course, if they’re not working, then go ahead and try Topamax, it just might be the thing you need. Johnson & Johnson, the current owners of Topamax, began testing it as a weight loss medication on people without epilepsy, migraines or bipolar in 2002, but halted the tests because the side effects were too much for too many people. Oh, and if you try Topamax, then stop, then try it again, forget about losing weight with it. It’s usually a one-time offer if you’re going to get that at all.

Topamax is not for everyone, not just because of its other side effects, but because it hits your temporal lobes heavily, and the odds are your bipolar activity or epilepsy is not focused in your temporal lobes. This one extreme case illustrates the use of Topamax in bipolar disorder with temporal lobe dysfunction. If you do have indications of temporal lobe disturbances, Topamax is usually best as an add-on medication. But for some people it can be effective as a primary mood stabilizer or antiepileptic. Besides the vaunted weight loss, Topamax is best known as Stupamax or Dopamax because it turns you into an idjit on drugs. It really is a supermodel drug that will make you skinny and stupid. Your memory will go down the toilet. You will experience mild aphasia, the inability to recall the correct word for something or calling something by a completely bizarre name. Your thinking will become fuzzy. And you had best drink lots of water, because Topamax is not extensively metabolized, is a weak carbonic anhydrase inhibitor, and is primarily cleared by your kidneys, so Topamax will give you a propensity for kidney stones. It gives me a couple small ones a year. I’ve found that trace mineral supplements and omega-3 fish oils helped to deal with the worst of the cognitive problems like the aphasia and stupid memory tricks I was getting until I hit the correct dosage.

For the first few months I was taking Topamax (topiramate) the intense and frequent déjà vu I experienced (one of the signs of temporal lobe damage) became jamais vu as the damage to the left lobe was being worked around. Jamais vu means the familiar will seem unfamiliar and out of place. Your stuff may not seem like it’s your stuff for a few months. It may feel like people are moving your stuff around when that is not happening. I suggest not dusting to prove that nothing has been moved. Another weird effect is things seeming the wrong size. This will make grocery shopping a real adventure. So you come home with way too many carrots and not nearly enough potatoes, that’s life on Topamax for your adjustment period. Really, those bizarre side effects just mean that the Topamax is working. Eventually it all gets straightened out and there’s no more déjà vu and no more jamais vu and only French people get to see things in weird ways.

One thing that Topamax (topiramate)might be good for is stopping drinking. There’s been one study done at the University of Texas in San Antonio on it as a way to deal with alcoholism that is very promising.1 There has also been one study done and another underway for its use in treating PTSD. Given how Topamax messes with your memory, that just makes so much sense. Topamax is also useful for migraines.

Like Lamictal (lamotrigine), Topamax (topiramate)can cause a lot of muscle aches and pains, despite also being good for them. I have a guess as to what that is about. Topamax is one of the few meds approved for Lennox-Gastaut syndrome, an uncommon form of epilepsy that, among other symptoms, presents the atonic seizure, where all your muscles go utterly limp. You’re having yet another relationship argument and you fall into a big pile of being the human turd, unable to move or even look away from the stain on the carpet. I’ve been there with the atonic seizures. I don’t know how Topamax (topiramate)rates when compared to Lamictal (lamotrigine) for Lennox-Gastaut, but they both have FDA approval to treat the disorder. So if you’ve got a med that keeps your muscles from going limp and normally your muscles don’t go limp all the time, it would follow that muscle aches and pains could be a result.

However, there is some good news on the skin front. It seems that Topamax (topiramate)can be good for your skin in one way, it appears to old scars heal. OK, so I’ve checked my old scars. The most noticeable is, of course, even more noticeable now. Good old paradoxical reaction there. But many others do appear to be vanishing. Now I’m not a good test subject for this, as I don’t get much in the way of scarring and even my tattoo began to fade long before I took Topamax. Yet the scars I did have before weren’t going away, so there may be something here after all.

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