Topamax Side Effects
common, uncommon, rare, and dangerous side effects; how long they last & how to mitigate them

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Potential side effects (adverse events in fancy pharmaceutical talk) are often used as a rationalization to not take a medication. Many people will stop taking an otherwise working drug because of one or more relatively minor, or often temporary side effects. There may even be ways to counter or mitigate side effects.

It all comes down to a very important question: which sucks less?

There is no perfect drug. If you keep switching meds in the hopes of finding something with no side effect, or irrelevant side effects that don’t bug you as much, you could wind up treatment-resistant, and a med that worked before may work as well as it did the first time, if at all.

1.  Side Effects All Crazy Meds Have

No matter which neurological and/or psychiatric drug you take, you’ll probably get one or more of these side effects. These will usually be gone, or at least will diminish to the point where you barely notice it most of the time, within a week or two.

• Headache
• Drowsiness / fatigue - even when taking stimulants in some circumstances.
• Insomnia, instead of or alternating with the drowsiness.
• Nausea
• Assorted other minor GI complaints (constipation, diarrhea, etc.)
• Generally feeling spacey / out of it
  • Which can all add up to the ever-helpful “flu-like symptoms” listed as an adverse event on the PI sheet of practically every medication on the planet used to treat almost any condition humans and other animals could have.

All crazy meds can, and probably will affect your dreams as well. There is no way of telling if that will be good or bad, let alone if this side effect is permanent or temporary.

So don’t operate any heavy machinery and try to avoid driving the first couple of days. We always recommend starting a new med Friday night / Saturday morning (or whenever your day off is) so you have an idea of how it will affect you for the first week or two. Keep in mind: most side effects are usually temporary in nature.

2.  Topamax Typical Side Effects

Most everyone gets at least one or two of these.

• Memory loss.
• Sleepiness, fatigue, and/or lethargy.
• A pins & needles effect (paresthesia), usually in your extremities, and that usually goes away after a week or two. If it doesn’t go away after two weeks it may never go away. The paresthesia may or may not be constant.
  • Keep this in mind: Paresthesia is a good sign. At least if you’re taking Topamax for migraines. If your fingers¹ are tingling, you’re way more likely to respond to Topamax than if they weren’t.
• Sodas and other carbonated beverages will taste like ass.
• Memory loss.
• Weird words coming out in place of what you wrench to say or write (aphasia).
• Word find problems, i.e. not being able to recall the names of people, things or, uh, you know, those thingies that are abstract…concepts! (dysnomia).
• A general cognitive impairment that has earned this drug the nicknames “Stupamax” and “Dopamax.”
• Shit, I’m sure I forgot one.

3.  Topamax Uncommon Side Effects

You may or may not get one or more of these, so don’t be surprised either way.

• Dry and/or itchy eyes along with assorted vision problems up to narrow-angle glaucoma. Don’t flip out over the glaucoma. It goes away after you stop taking Topamax, even if you go blind.
• You may find yourself not able to drink coffee any more, so be prepared to quit the bean.
• Food in general, and not just carbonated beverages, may not taste quite the same.
• Frequent, intense déjà vu or jamais vu. If you were experiencing one prior to taking Topamax be prepared to experience the other.
• Full-body muscle aches that feel as if you were hit by a truck, or had a tonic-clonic seizure. Similar to Lamictal.²

4.  Potentially Dangerous Side Effects of Topamax (topiramate)

If you have one or more of these, call your doctor ASAP. Or now. Or get the hell off of the Internet and go to the ER. NOW!

• Kidney stones and similar renal problems.
• Decreased sweating (oligohidrosis) and increased body temperature (hyperthermia). Adolescents and children are more susceptible to this one.
• Metabolic acidosis
• Hyperammonemia (build-up of ammonia in your blood), with and without encephalopathy (doctorese for “my brain hurts”). This usually happens when:
  • Taking Topamax with a valproate (Depakote (divalproex sodium), Depakene/Stavzor (valproic acid), or whatever they call sodium valproate/valproate sodium where you live).
  • Adolescents are taking Topamax for migraines.
  • Children are taking Topamax for epilepsy.

5.  Topamax Freaky Rare Side Effects

You won’t get these. Unless you already have and that’s why you’re here.

• Tongue paralysis
• Neverending cough
• Staghorn calculus. I’d like to know how you do calculus using antlers. “Calculus” is doctorese for “kidney stone” and similar problems that involve your squishy bits turning into rocks. “Staghorn” is your upper urinary tract. Staghorn calculus is painful, serious, and if you look at the pictures with this case report, rather gross.
• Palinopsia and the Alice in Wonderland syndrome. So Topamax explains Sarah Palin?
  • Palinopsia is persistent after images, i.e. you keep seeing something you looked at when you look at something else. Read about one of our forum member’s experiences with Topamax-induced palinopsia. It was a temporary, albeit worrying, side effect.
  • Alice in Wonderland syndrome is when you perceive all or parts of your body as being very large (macropsia) or very small (micropsia). It is often a symptom of migraines and temporal lobe epilepsy, so it is often fixed by Topamax. As with all anticonvulsants, anything Topamax can fix is also a potential side effect. I still have an episode of macropsia now and then, due to temporal lobe epilepsy, but it happens far less often thanks to Topamax.

For all known side effects, see the Topamax full US prescribing information. Or really indulge your paranoia by reading every PI sheet in the world we can find.
n.b. Reading the PI sheet for a drug you haven’t taken is an exercise in the fear of medications (pharmacophobia).

6.  Ways to Counter/Minimize/Deal with Some Side Effects of Topamax (topiramate)

• A lot of people who get the full-body muscle ache have reported regular stretching (e.g. yoga) helps.
• While Topamax usually works a lot better for certain things (e.g. ultradian rapid cycling) when you take it twice (or even three or four) times a day, if the sleepiness and/or fatigue are bad enough you can try taking all or most of your dosage at night.
• Drink plenty of water.
• For some of us weight loss is actually a bug and not a feature. Topamax is a crazy med that usually works as well, or nearly as well, the second time you take it as it did the first. Except you won’t lose any weight the second time around. Even if you do, it won’t be as much. So if weight loss is a serious problem for you, 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, and you’ll probably be one of those people who still lose weight no matter how many times you stop taking Topamax and try it again latter.

7.  Topamax (topiramate) Pregnancy Category

C-Use with caution

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Pregnancy category is included here as it is a potential side effect that many people take into account when considering a medication. Exactly what do the pregnancy categories mean?

Pregnancy categories A, B, C, D, and X are used to quantify both risk and the risk-to-benefit ratio. They are relatively neutral when it comes to severity of birth defects.
The only difference between categories A and B is that the drug companies conducted human trials to get that A rating, while the B rating means there has been no reported birth defect of any kind since the drug has been on the market. With both A and B, no matter how much of either med researchers give to critters, the cute little babies are just fine. Until dissected to prove there is no problem.

Category X is fairly straight-forward. You take this drug while pregnant, possibly pregnant, or potentially pregnant, your kid will be born with three arms and a total of two fingers. There are also plenty of alternatives available. So unless you’ve tried everything else already, talk to your doctor about another med. In fact, if you’re a woman whose baby-making bits still work, you should ask your doctor why you’re taking this stuff instead of something else in the first place; or consider having all of your reproductive organs removed if nothing else worked, you’ve run out of options, and your condition isn’t popular enough for the drug companies to develop any new medications to treat it.

It’s the meds that are categories C and D are difficult. C means animals gave birth to mutants when given anywhere from sub-therapeutic to ridiculously high amounts of the medication in question, and there have been reports of human birth defects that may be due to taking the med. Sometimes the data from the field are so vague (e.g. all or almost all the women were taking at least one other medication), and the critters didn’t spawn Roger Cormanesque offspring on anything lower than 50 times the maximum human dosage, that it’s pushing a C+ to B-. The important thing is category C meds are first-line drugs while category D meds are usually second- or third-line drugs. Let’s compare Lamictal (lamotrigine), Topamax (topiramate), and Depakote. Lamictal is fairly safe. It looks like an overall 2-3% rate of birth defects, and the animal tests show a slight increase in the risks for low birth weight, low folate levels, and miscarriage. Category C, easy.
It’s a different story with Topamax. From the Topamax PI sheet:

And that doesn’t even get into the animal tests - that section of the PI sheet reads like a bad X-Files Fringe script - or the increased risk of low fetal body weight or miscarriage due to metabolic acidosis and other side effects that can affect the mother. So why is Topamax category C instead of category D?

• Because Topamax is a one-pill wonder for so many women with migraines and/or full-on, flopping-around-like-a-fish-out-of-water generalized seizures.
• It doesn’t make them fat.
• There aren’t enough reports of problems to figure out what the exact risk is. By now there would either be enough instances of problems to know what the chances of birth defects or miscarriage are, or that the odds are Topamax is safe. It’s just not 97.something percent or better safe like Lamictal.
  

Category D means you can still consider taking the drug, but you probably want to try another one first if you might be getting pregnant. Category D meds may still be first-line drugs, but they’re usually meds that used to be one of the first things prescribed but are now second or third line. Depakote is one. Why is Depakote is category D?

• Because the birth defects happen fairly often - 11% of the time for something serious.
• They’re pretty bad, like spina bifida and needing a liver transplant at birth.
• Depakote isn’t as good as Topamax when it comes to migraines.
• It makes people fat. Along with other side effects that are worse than what you’d get from Topamax, Lamictal, and most other first-line meds prescribed for epilepsy, bipolar, and migraines.
• But Depakote is still a reliable med for epilepsy, bipolar, and migraines, and it’s side effects suck less than desperation meds like Felbatol (felbamate) and Sabril (vigabatrin).

Thus Topamax has a risk-to-benefit ratio that makes it category C, while Depakote’s is category D: there are better meds out there, but we know that Depakote works and that sucks a lot less than taking nothing.

For more information, see the Federal Regulations covering PI sheets and the FDA’s Summary of Proposed Rule on Pregnancy and Lactation Labeling. They’re both remarkably clear for legal / bureaucratic documents.

Date created 11 Jan 2011 - 13:43 Page Author: Jerod Last edited by: JerodPoore

Topamax Side Effects by Jerod is copyright 2011 Jerod

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² Have I mentioned how open source operating systems for commercial applications is one of the dumbest ideas in the history of dumb ideas?
[begin rant] I rent a dedicated server for Crazy Meds. It’s sitting on a rack somewhere in Southern California along with a bunch of other servers that other people have rented. The hardware is identical, but no two machines have exactly the same operating systems. I don’t even need to see what is on any of the others to know this. If somebody got their server at the exact same time, with the exact same features as I did, I’m confident that there would be noticeable differences in some aspects of the operating systems. So what does this mean? For one thing it means that no two computers in the same office of a single company have the same operating system, and the techs can spend hours figuring out what the fuck the problem could be based on that alone. It also means that application software like IP board that runs the forum here has to have so many fucking user-configurable bells and whistles that even when I read the manual I can’t find every setting, or every location that every flag needs to be set in order for a feature to run the way I want it to run. And in the real world it means you can get an MBA not only with an emphasis on resource planning, but with an emphasis on using SAP - a piece of software so complex there are now college programs on how to use it. You might think, “But don’t people learn how to use Photoshop or Adobe Illustrator in college?” Sure, in order to create stuff. And in a way you’re creating stuff with SAP. But do you get a Bachelor of Fine Arts degree with an emphasis on Photoshop?
Back in the Big Iron Age the operating systems were proprietary, and every computer that took up an entire room with a raised floor and HVAC system, and had less storage and processing power than an iPhone, had the same operating system as every other one, give or take a release level. But when a company bought application software like SAP, they also got the source code, which was usually documented and written in a way to make it easy to modify the hell out of it. Why? Because accounting principles may be the same the world over, and tax laws the same across each country and state, but no two companies have the same format for their reports, invoices, purchase orders and so forth. Standards existed and were universally ignored. If something went wrong it went wrong the same way for everyone, and was easy to track down. People didn’t need to take a college course to learn how to use a piece of software.
I’m not against the open source concept entirely. Back then all the programmers read the same magazines, so we all had the same homebrew utilities. We even had the forerunner to QR Code to scan the longer source code. Software vendors and computer manufacturers sponsored conventions so we could, among other things, swap recipes for such add-ons and utilities. While those things would make our lives easier, they had nothing to do with critical functions of the operating system. Unless badly implemented they would rarely cause key application software to crash and burn. Whereas today, with open source everything, who the hell knows what could be responsible some part of a system failing. [/end rant]