Some tips that are general to all antiepileptic drugs (AEDs) / anticonvulsants (ACs) regarding their dosages, discontinuation, and just taking them. You’ll have to look up the pages on the individual meds for more specific information.
The dosages and titration for AEDs are typically identical for epilepsy and bipolar, so if you are blessed with the dual diagnoses of bipolar and epilepsy as I am, treat the epilepsy first. Find a med that will get the seizures under control and you’ll find that the bipolar won’t be as bad.
You may be wallowing in depression, but believe us, as much as depression sucks it is far less dangerous and damaging than mania or the especially sucky mixed state. Once the seizure activity is under control, then start going after the bipolar, using the anticonvulsant(s) you’re on as a baseline for your treatment of bipolar. Try to get your neurologist and psychiatrist talking to each other from the beginning.
Actually, there is an exception to the dosage of anticonvulsants being identical for epilepsy and bipolar. In extreme cases of epilepsy the drugs are often rated for a slightly-to-much higher dosage for really severe seizures. But those dosages are usually not meant for long-term usage. They’re just to get the seizures under control until you can find an add-on medication or another med all together.
A far more likely combination is bipolar disorder and migraines. Around 25% of the bipolar get migraines, while over half of all migraineurs - up to two-thirds of the women - are diagnosed with, or probably have, a mood disorder. And most of them have bipolar 2, whether or not it’s diagnosed or correctly diagnosed. Many AEDs are really effective for preventing migraines (prophylaxis) and other headaches.
The dosage for migraines and bipolar disorder are usually quite different, as the dosage for migraines tends to be really low. But that can be a feature, and not a bug, because…
Our general rule for starting and taking any crazy med for any condition is to start at the lowest possible dosage, increase the dosage as slowly as you can until your symptoms are under control, and stay at that dosage.
It’s just that simple.
Assuming you have the luxury to do things that way. If you’re having severe that haven’t responded to anything, seizures, an intense bipolar flip-out, or some other crisis, and someone else is reading this - then doing whatever your doctor recommends you do is probably the best course of action.
Back to our best-case scenario. For some people that means you’ll be at what is normally a sub-therapeutic dosage. 25mg a day of Topamax (topiramate) works for a lot of migraineurs. Lots of people are quite happy at 100mg a day, or less, of Lamictal (lamotrigine) for unipolar or bipolar depression. Sure, eventually those dosages may need to go up, but not always. That’s the beauty of these meds, you can make do with low dosages for a long time for a lot of disorders.
The evidence is piling up that many of these meds can suppress or even reverse the kindling damage to the brain that epilepsy, and presumably bipolar disorder, can do to the brain. Keppra (levetiracetam) is one med shown to do it in humans. Gabitril (tiagabine) is another that has worked in humans, but for people whose brains have really kindled. Still, it would likely work for everyone else. Lamictal (lamotrigine) has tested well in rats. Topamax (topiramate) has done so as well.
What does that all mean, all that stuff about suppressing and reversing kindling damage? It means that long-term use of anticonvulsants actually repair your brain. Isn’t that frickin’ miraculous? Now this will take years, folks. Not weeks, not months, but years. It’s slow, complicated work on the most complicated organ in your body. The bit that is most responsible in defining just who you are. But the meds are doing something that radical brain surgery is only sometimes able to do. With a lot less blood, and far less chance of your dying or walking around with one foot dragging behind you and not being able to remember the names of any fruits.
It also means that after so many years you can probably start lowering your dosage to a nice maintenance dosage of whichever anticonvulsant you get along with best. So if you’re on a cocktail of a bunch of meds now, eventually you can look forward to being on one or two.
If you’ve been taking anticonvulsants for a few months or longer and need to stop, you can’t stop cold turkey. Unlike stopping SSRIs the effects of sudden discontinuation aren’t just viciously unpleasant, they can be downright dangerous. You run the risk of having seizures on top of bipolar, migraines or whatever getting worse. These run the gamut from partial complex or absence seizures to tonic-clonic grand mals. Maybe you’ll have this problem, maybe you won’t, there’s no way to tell. If you never had a seizure before that doesn’t mean you won’t start flopping around like a fish out of water. The risk is worse if you’re taking a lithium variant, and/or any antidepressant, especially Wellbutrin (bupropion hydrochloride).
Anticonvulsants need to be gradually discontinued to prevent any seizure activity from happening. With gradual discontinuation the worst most people experience is slight dizziness, confusion and sensitivity to sound and/or light. If you’re already taking another anticonvulsant and are in the therapeutic range already, then you can probably stop one cold turkey with little risk of seizures, presuming you have no past history of seizure activity. You’ll feel other wacky effects, and those will vary from med to med, but you won’t be risking seizures. Let me qualify that, it has to be an anticonvulsant that is known to be effective for you. If it’s a new anticonvulsant, well, you just never know. The odds are in your favor at least.
If you do have a history of seizure activity, stopping any anticonvulsant cold turkey is never a decision you should make based upon information gleaned from any stupid website on the goddamn Internet you jackass, you should be discussing that with at least two neurologists! Get off your computer, on the telephone and start making appointments!
If you are stopping, there had better be a good reason. Is it because the drug isn’t working as well as it did before? If that’s the case it may be a question of just adjusting the dosage - upwards or downwards. Gabitril (tiagabine hydrochloride) is the one anticonvulsant I know of that will poop-out with any regularity. Anecdotal evidence of users (as well as my own experience) has it pooping out for various off-label psychiatric uses all the time. For epilepsy the data are contradictory. One review of case histories (plus bunches of individual case reports) makes it look kind of dodgy. Another clears it. In any event, all the others rarely do fail on their own accord. If you haven’t been 100% compliant with taking your meds like you’re supposed to, well, don’t go blaming the med.
What happens with them, though, is you’ll often have breakthrough symptoms of whatever you’re taking an anticonvulsant for and you’ll need to have your dosage and/or your dose schedule adjusted. Try that before just giving up on a particular anticonvulsant.
Because anticonvulsants are so freaking picky you have to be 100% compliant about taking your meds every day, when you’re supposed to. If you’re supposed to take them with food, then take them with food. It’ll help to keep a journal of effects if you eat a particularly varied diet, because different foods can mess with the absorption rates of different meds. Tegretol (carbamezepine), for example, does especially well when taken with fatty foods.
Once you find the right anticonvulsants, and the right dosages, however long that may take, after 3–12 months you’ll find yourself thinking really clearly. Whether it’s for bipolar, or epilepsy or both, you’ll just be thinking clearly. Unless you’re just taking Keppra (levetiracetam), in which case you’ll probably be thinking way more clearly than ever in a matter of days. You’ll need some patience, obviously. You have to get beyond the quick-fix mentality that too many people have. What’s a year compared to the rest of your life?
Just think how miraculous it is. These little pills (OK, if you’re taking a valproate, especially Depakote ER, they’re big-ass pills) are changing the way your brain works. Without surgery. No more seizures. No more mood swings. No more migraines, or PTSD flashbacks, or whatever. To me that is truly a miracle of modern science! Think how long it would take to recover from an auto accident where your car is totaled and they cut you out of the wreckage with the jaws of life and you had casts and metal pins and everything. Well with bipolar disorder and epilepsy it’s just like that: a car-wreck in your head1. Have some patience with how long it will take and give yourself some space to heal.
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1 If you've ever said your life is a car/train wreck, now you have proof. If you want to further explore the concept an inner landscape littered with car crashes, I recommend the works of JG Ballard, specifically Crash, The Concrete Island, and, if you really want to delve into someone else's crazy, The Atrocity Exhibition. Especially the illustrated, annotated, and expanded version from RE/Search publications.
Tips for Taking and Discontinuing Antiepileptic Drugs / Anticonvulsants by Jerod Poore is copyright © 2010
Page created by: Jerod Poore. Date created: 21 November 2010 Last edited by: JerodPoore on 2013–08–20
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1 While there are plenty of books to help you with hypochondria, for some reason there’s not much in the way of websites. Then again, staying off of the Internet is a large part of curing/managing the disorder.
2 Remember kids, Microsloth operating systems are like TOS Star Trek movies with in that every other one sucks way, way more. With TOS Star Trek movies you don’t want to bother watching the odd-numbered ones. With Microsloth OS you don’t want to buy and install the even-numbered ones. Anyone who remembers ME and Vista knows what I mean.
3 Have I mentioned how open source operating systems for commercial applications is one of the dumbest ideas in the history of dumb ideas?* I don’t even need my big-ass rant any more. Heartbleed has made my case for me. And that’s just the one that got all the media attention. The very nature of an open source operating system makes security as much of an illusion as anonymity on teh Intergoogles. Before you flip out too much: the domain Crazymeds is hosted on uses a version of SSL that is not affected by the Heartbleed bug. That’s one of the many reasons why I pay a lot of money and keep this site on Lunarpages.
* Yes, I know I’m using open source browsers. I also test the site using the now-defunct IE and Safari browsers. Their popularity - and superiority - killed IE and Safari, so that’s why I rely on the open source browsers. It’s like brand vs. generic meds. Sometimes the generic is better than the brand.
Author: Jerod Poore Date Modified: 2015–12–18 Date Published: 2010–11–21