Anticonvulsants are broken up into different classes based upon chemical structure, how they work in your brain or how your liver deals with them. Brain, liver, they’re all squishy bits, right? So in the US market we have the valproates:Depakote (divalproex sodium)
Depakene (valproic acid),
and the rarely used (but much more popular overseas) Depacon (valproate sodium or sodium valproate depending on the literature you read).
Look closely, note that valproic acid is not the generic for Depakote. I’ll be hammering this point until people get it. These three meds are very closely related chemically, and are often lumped together as the same med. But they aren’t really. Once they hit your brain it’s close enough for government work, but in your digestive system and liver they can be very different. If circumstances force you to switch from one to another your brain won’t care too much, but your digestive system might care, and let you know in no uncertain terms.
Next up are the Enzyme Inducing Anti-Epileptic Drugs, or EIAEDs. A family of meds that produce similar effects on your liver, and wildly different results in your brain. They are grouped together though because of important drug-drug interactions with other meds, including other anticonvulsants, antidepressants, antipsychotics, and other medications. Really, it does make sense. The drugs in this family include:
Tegretol / Carbatrol (carbamazepine)
Only the last two work in similar ways in your brain and chemically related. See the pages for more detail, but you can pretty much switch between Tegretol and Trileptal without too much trouble. Dilantin is also classed as a Hydantoin, along with Cerebyx (something you’d only get in a hospital).
Then there are the GABA analogues. These meds are basically fake GABA, a neurotransmitter critical to treating epilepsy, bipolar disorder, anxiety disorder and a variety of other issues. Real GABA can’t cross the blood-brain barrier, so don’t waste your money on buying GABA at the health food store. Gabitril isn’t really a GABA analogue, but it gets classified as such because all it does is potent GABA reuptake inhibition and absolutely nothing else. No voltage channel modification, no messing with glutamate or kainate. Nothing. So it may as well be fake GABA because you get slammed with enough of it when you take some. Trust me on that point.
Technically the benzodiazepines are also anticonvulsants, and while they have their place in treating both epilepsy and bipolar disorder, they have a section of their own.
A couple meds we may or may not cover are the Succinimides – Celontin and Zarontin. These are kind of last resort meds for absence and partial seizures. I’ve not been able to find out too much about them. One of these days I’d like to cover them.
That leaves all the other anticonvulsants:
Mysoline (primodone) (withdrawn from most markets, good luck finding it)
Again, to get technical, Lamictal is in a class of its own. Which shouldn’t surprise anyone. It’s a Phenyltriazine.
At some point I hope to cover some of the meds only available or primarily used outside of the US. Such as:
Then we have the stuff has anticonvulsant properties, but the use of which is way off-label. For example:
Meclofenamic acid, a non-steroid anti-inflammatory that is regularly used to treat canine epilepsy. It is approved as a human painkiller, so this isn’t a vet drug.
Progesterone-based birth control pills. Sorry, guys, this is just for the girls. This is both for Catamenial epilepsy (shaking it up that time of the month) and all other forms. I’ve found a couple of studies in humans (and plenty in critters) that show progesterone to have mild anticonvulsant properties in of itself or as an add-on to other meds. One from Finland and one from the good old USA. This doesn’t even count its use in treating catamenial epilepsy, which is documented all over the place.
People are constantly asking me what the equivalents are for different anticonvulsants. Except for Tegretol / Carbatrol (carbamazepine) and Trileptal (oxcarbazepine) or all of the valproates (Depakote (divalproex sodium),Depakene (valproic acid) and Depacon (valproate sodium)) it literally is an apples and oranges comparison. But since apples and oranges are both types of fruits, there are commonalities. Brent Jensen of Queen’s University School of Medicine, Kingston Ontario has put together a handy Mood Stabilizer Comparison Chart. Of course it applies only for meds available in Canada, eh. And it deals with these medications only as they apply to treat bipolar disorder, and not epilepsy, migraines or any off-label applications. But it’s better than nothing. Especially until I get around to doing the drug-to-drug comparisons for anticonvulsants like I have for some of the atypical antipsychotics like Seroquel (quetiapine).
Uses for Anticonvulsants / Mood Stabilizers
In Bipolarland the term “mood stabilizer” incorrectly applies to anticonvulsants only. In fact the set of medications that act as mood stabilizers includes anticonvulsants, antipsychotics and lithium. Anticonvulsants include benzodiazepines, which also have anxiolytic (anti-anxiety) properties. Antipsychotics are broken up into two classes, the older typical and newer atypical classes, and they also deal with a variety of other psychiatric issues. Confused yet? It’s no wonder that drugs are just thrown at patients until something works, there are so many from which to choose! When you total them up there are over forty, that’s right, more than 40 medications that act as mood stabilizers, although officially just a handful have FDA approval for such.
Most mood stabilizers are really anti-manics. Sure, they’ll take the edge off of bipolar depression, but what they’re really good at is bringing you down from your manias. Sometimes too far down. Only lithium and Lamictal (lamotrigine), amongst the officially approved treatments for bipolar disorder, are known for helping with bipolar depression. Along with the antipsychotics Geodon (ziprasidone) and Abilify (aripiprazole). Sometimes Geodon (ziprasidone) and Abilify (aripiprazole) can be a little too good at bringing the bipolar up from the depressed depths. Some word is coming up about the anticonvulsant Zonegran (zonisamide) being good for depression as well, although I’m a bit leery of Zonegran (zonisamide) in general.
All anticonvulsants try to calm hyperactivity in the brain, and this works for epilepsy and bipolar equally. How they go about it will vary from med to med. They target different areas of the brain. They all work with some neurotransmitter or another. Most deal with a voltage channel or two. A few deal with some other things as well. When dealing with epilepsy a good neurologist will be dealing with your symptoms and EEGs and selecting the best meds to try first. Bipolar disorder should work the same way, but far fewer psychiatrists work that way, so I’ll be touching upon it in articles on which meds are likely to be best for you. Anticonvulsants work on the brain in unique and often little-understood ways that they are now being evaluated for a wide spectrum of disorders beyond the traditional ones of epilepsy, bipolar and migraines, including the less common forms of PMDD.
Different anticonvulsants are generally more effective for different forms of bipolar, epilepsy and migraines. These are addressed in detail in the articles for individual meds, in future articles that will be about specific disorders, and the eventual Crazy Meds’ Drug Algorithms. For now, here’s the short version of the first medication to try for specific diagnoses:
Bipolar 1: lithium
Bipolar 2: Lamictal (lamotrigine)
Bipolar with rapid cycling (four times a year to four times a month) to ultra-rapid cycling (once a week to once a day) features and/or mixed states: Depakote (divalproex sodium) if primarily manic or mixed. Lamictal (lamotrigine) if primarily depressed with or without mixed states. Usually with an atypical antipsychotic.
Bipolar with ultradian rapid cycling (cycling several times a day): Depakote (divalproex sodium), Topamax (topiramate)or a cocktail of Lamictal (lamotrigine) and one of: Trileptal (oxcarbazepine), Tegretol (carbamazepine USP) or Topamax (topiramate). Usually with an atypical antipsychotic.
Bipolar 6 or NOS with periods of totally over-the-top euphoric mania: Keppra (levetiracetam). Good for seasonal manias.
Generalized, full-on tonic-clonic (or clonic-tonic as the case may be) seizures: Topamax (topiramate)or Depakote (divalproex sodium).
Temporal lobe epilepsy (TLE): One or more of: Trileptal (oxcarbazepine), Tegretol (carbamazepine USP) or Topamax (topiramate). Lamictal (lamotrigine) is also showing promise for TLE.
Frontal lobe epilepsy: Lamictal (lamotrigine) or Dilantin (phenytonin)
Hippocampus-based epilepsy or other stuff with weird-ass symptoms they can’t pin down: Keppra (levetiracetam). Sometimes Lamictal (lamotrigine). Sometimes either of those mixed with Topamax (topiramate).
Lennox-Gastaut syndrome: Lamictal (lamotrigine) and/or Topamax (topiramate).
There are a bazillion forms a epilepsy. Those are just off of the top of my head. Wait for the full article, and don’t but me about writing it. Bugging me about writing it will just delay its publication.
As for migraines, I don’t know enough about them. Sorry, I just suck that way. Maybe one day I’ll be useful in that area.
There’s a wacky hypothesis floating around, one that is not my own for once, that some forms of bipolar and migraines are really subsets of epilepsy, so that’s why every anticonvulsant on the market doubles as a mood stabilizer and potential migraine medication. As soon as a new one hits the market, it gets evaluated for bipolar and migraines, even though currently only Depakote (divalproex sodium), Tegretol (carbamazepine USP) and Lamictal (lamotrigine) are the only anticonvulsants with official FDA approval to treat bipolar. While Depakote (divalproex sodium) and Tegretol (carbamazepine USP) and Topamax (topiramate)have the official nod to treat migraines. But there’s plenty of off-label prescribing going on, and I’m all for it in most cases (details of which are covered on the individual med pages).
That hypothesis load of crap, as witnessed by the short-term effectiveness of antipsychotics as mood stabilizers. Most telling is this study. If nobody having a psychotic episode is going to show any epileptiform activity on their EEG, then it’s pretty much a given that bipolar disorder, schizophrenia & schizoaffective disorder don’t live in the epilepsy spectrum. Even if 12% of people with epilepsy have bipolar disorder. We sort of make life hell for both neurologists and psychiatrists, and they seem to wish that we didn’t exist, even if anticonvulsants do double duty. Probably because one anticonvulsant just won’t cut it for all of our issues. Oh, and let’s further confuse the issue with the fact that symptoms of some forms of epilepsy mimic those vary psychoses, enough to confuse the hell out of numerous shrinks. I’ve had two psychiatrists suggest that I’m not bipolar at all, that it’s all an epilepsy thing. On the flip side, when I spent 72 hours in a psychiatric lock ward, it was because I was suffering from long bouts of complex partial seizures.
My mind is still open about migraines being a form of epilepsy. There are still enough similarities between the actual disorders, and not just the treatments, for me to accept that a migraine is one hell of a long-lasting seizure with godawful pain thrown in for good measure.
The reason why anticonvulsants seem to work for bipolar disorder (and other things) is explained here. At least it was as of this writing. If that link vanishes I’ll try to write it up myself sometime. The short answer: For the same reasons why ECT, Vagus Nerve Stimulation and Transcranial Magnetic Stimulation all work – messing with voltage channels helps to regulate errant signal processing.
Besides epilepsy, bipolar disorder and migraines, what else are anticonvulsants used for?
A variety of neuropathic pain treatments. If it hurts and they think the source of the pain is in your head (not that you’re imagining the pain, but that the cause of the pain is from a brain malfunction), anticonvulsants are a first-line treatment. Neurontin (gabapentin) is especially popular for this, being approved for one form of neuropathic pain and having one of the lower side effect profiles around. Some examples:
Gabitril for neuropathy
Lamictal for diabetic neuropathy
Neurontin for neuropathic pain
Neurontin for HIV/AIDS-related neuropathy
Neurontin for phantom limb pain
Tegretol for diabetic neuropathy
Trileptal for neuropathic pain
Other types of headaches besides migraines. Such as:
Lamictal for SUNCT syndrome headaches
Topamax for cluster headaches (not a first-line treatment)
Anticonvulsants aren’t usually first-line meds with anxiety disorders. But there are some forms that respond better to anticonvulsants than other meds. The type of anxiety that cycles is one example. PTSD is another. And if OCD doesn’t respond to anything else, an anticonvulsant can sometimes boost the effectiveness of an SSRI. For instance:
Depacon (valproate sodium) for PTSD
Depakene (valproic acid) for social anxiety disorder
Depakote for PTSD
Gabitril for PTSD
Gabitril for generalized anxiety disorder
Neurontin for social phobia
Tegretol for PTSD
Trileptal for augmenting treatment of OCD
As you’ll see from the side effects page, anticonvulsants make you sleepy. Eventually they’ll go from making you tired all day to making you sleep 8-9 hours a night. Deal with it. In any event this makes them excellent meds for sleep disorders! So we have:
Depakote for sleep disorders (including restless leg & PLMD)
Neurontin for sleep disorders
Topamax for sleep disorders
Just as atypical antipsychotics are frequently used to treat bipolar disorder, anticonvulsants are now on the leading edge of research into the treatment of schizophrenia and schizoaffective disorder. Cases in point:
Depacon (valproate sodium) for schizophrenia
Depakene (valproic acid) for schizoaffective disorder
Depakote for schizophrenia
Depakote for schizoaffective disorder
Lamictal for schizoaffective disorder
Trileptal for schizoaffective Disorder
Another difficult to treat illness is borderline personality disorder. Anticonvulsants have shown promise in treating a variety of elements of BPD:
Depacon (valproate sodium) for borderline personality disorder
Depakote for borderline personality disorder
Topamax for Eating Disorders
Topamax for healing old external scars (such as from self-injury).
Alcoholism and other substance abuse issues. And not because someone was just trying to self-medicate their way out of bipolar disorder either. For some reason anticonvulsants are just good at helping people with their substance abuse issues. Some examples of this include:
Depacon (valproate sodium) for alcoholism
Depakene (valproic acid) for alcoholism
Depakote for alcoholism
Depakote for cocaine dependency
Gabitril for cocaine abuse
Neurontin for cocaine abuse
Tegretol for alcohol withdrawal syndrome
Tegretol to get you through benzodiazepine withdrawal
Topamax for alcoholism
It’s almost like there’s not a form of mental wackiness that some anticonvulsants hasn’t been used to treat! I’m still working on all the pages for them, but just use the search feature in the table of contents to search this site if you’re looking for a particular disorder, and chances are you’ll hit one or more references to anticonvulsant pages.
If it’s bad enough where you need to take an anticonvulsant / mood stabilizer, there’s usually no question that you need to be taking meds. Really. If your doctor says you need to be taking one of these meds, then you are fucked up enough to need to be taking one of these meds. It’s really that simple. Stop denying whatever the hell it is you’ve been denying. The only thing I require of the doctors is that they do a thorough examination of someone before prescribing any medication. A fifteen minute diagnosis is rarely enough, unless someone is obviously flipping out.
Plus you need to be seeing a therapist or a counselor. If you’re nuts, you need to see a therapist, and that’s that. The meds are just not enough. If you’re epileptic, have some other seizure disorder, have migraines or other type of neuropathic pain, or are taking these crazy meds for any of the vast array of off-label uses, you should see a counselor to get a better idea of how you need to live your life with whatever disorder you have, because your doctor sure as hell isn’t going to tell you everything you need to know. And regardless of the affliction, you need to belong to a support group to learn what it’s really all about to have whatever you have. For more information on, and reasons why you should be seeing a pro and belong to a support group, take a look at my page on support groups.
Despite all the scary potential side effects, it really is better to try some form of anticonvulsant / mood stabilizer once you have a diagnosis of bipolar disorder, be it one or more of lithium, an anticonvulsant or an antipsychotic. The same applies to epilepsy and anticonvulsants. Just letting it, or them go brings the kindling effect into play, where every mood swing or seizure just gets your brain into that much worse of shape and makes it that much harder for the anticonvulsants or other mood stabilizers to work if and when you decide to eventually start trying them. The bipolar are amongst the worse to seek treatment, so it’s not just you, it’s hard for all of us, and the combination of nasty side effects and there being no guarantee of any single medication working doesn’t help matters any. Yes, you may have to try several medications or combinations of medications before you find something that works, but the odds are there is a drug or combination of drugs that will work for you. And if you have one of the many other disorders that anticonvulsants are being applied to – depression, PTSD, anxiety, alcoholism and other drug addictions, various psychotic symptoms and you don’t get along with any antipsychotics, whatever; if your doctor recommends an anticonvulsant, do the research and make an informed decision. But my advice is to at least give a couple of the meds in the class a try. They are weird and they are picky, but when they do work they can turn your life around. Unfortunately a few people have started to jump on the anti-anticonvulsant bandwagon. It started with a report by Dateline on Parke-Davis’ truly sleazy marketing of Neurontin (gabapentin) . While Neurontin (gabapentin) can be a useful medication for a variety of disorders beside epilepsy, Parke-Davis went way over the top in getting that point across to doctors. Now it’s up to a jury to decide just how bad they were. However, that report has led to fear-mongering articles such as this where only epilepsy is deemed serious enough to risk the potential side effects of Topamax (topiramate), and that conditions such as bipolar disorder just aren’t severe enough. And of course the study on anticonvulsants and bipolar patients using Topamax (topiramate)quoted in the article, did it screen for people with temporal lobe dysfunction as part of their bipolar, you know, the people for whom Topamax (topiramate)does the most good? I thought not. Oh and the glaucoma associated with Topamax (topiramate)? It goes away when you stop taking Topamax (topiramate). Isn’t that worth risking to relieve migraines?
Anyway, now many people are stating that it should be lithium only for bipolar. Guess what folks? Lithium was even an off-label drug for bipolar. It was originally prescribed for uraemia, renal calculi, gout and rheumaticism, and later hysteria. If we didn’t use anything off-label, we’d have precisely zero, that’s 0 medications for bipolar disorder. But it should be a serious disorder to take anticonvulsants, as is true with any neurological / psychiatric medication. Vanity weight loss is no reason to take Topamax (topiramate)or Zonegran (zonisamide). Anxiety disorders or depression that may respond to therapy alone are no reason to take Gabitril (tiagabine hydrochloride) or Lamictal (lamotrigine). These things suck, but do they really suck badly enough to put up with these crazy meds? That’s the sort of thing that you and your doctor have to take the time to figure out, and not just throw a med at a problem after a haphazard 15 minute appointment. I’m all for the appropriate use of medications, even appropriate off-label prescriptions. But it has to be done the right way, dammit.
In fact, even for all the wacky off-label stuff, anticonvulsants are probably worth a try if the regular medications don’t do it for you. As the above mentioned article notes, they are being tried for just about everything. They are weird, weird meds and they work in mysterious ways, but they do work. OK, Neurontin (gabapentin) and Gabitril (tiagabine hydrochloride) are notorious for not working. Neurontin (gabapentin), while it works for me, has a high failure rate because it doesn’t get digested well by a lot of people. Its successor med Lyrica (pregablin) is supposed to address these issues. We’ll just have to see about that. And Gabitril (tiagabine hydrochloride) is the one anticonvulsant that will poop-out with any regularity when used for psychiatric disorders. But all the others, they certainly do something. They may not be the answer for you, but you will note that they will change the way you think. It’s just a question of finding the right medication to get you thinking the way you want to be thinking. It all comes down to which sucks less? I’d much rather deal with the athlete’s foot, the morning sinus clearing, food not tasting as good as it used to, and being somewhat more lazy than most people than being so insane that The Answer was to go to Liberia in 2002 and find someone who would give me a machete and just take it from there.
Common Side Effects of Anticonvulsants / Mood Stabilizers
There are side effects common to all anticonvulsants. Some of these extend to mood stabilizers of other classes (lithium, atypical antipsychotics) so some of those meds with common effects will be mentioned in passing for members of our bipolar reading audience.
Here are the most prevalent, notable or ones you really have to watch out for:
Two are lethargy and photosensitivity. No more getting up early, going outside and getting all tanned once undergoing treatment with anticonvulsants, or any form of mood stabilizer, as you’ll want to sleep more and must avoid prolonged exposure to strong sunlight. Some are worse than others, but since so many of us in the bipolar and epileptic spectra go Gothic anyway it seems a pointless warning. The lethargy is especially bad with lithium and anticonvulsants and is only going to get somewhat better with time. The very nature of these medications is that they slow down your brain to fight your mania or to prevent you from having seizures. In doing so they also wind up slowing down your metabolism. Well, duh. This sucks no matter which disorder they are fighting. With epilepsy you wind up slower than a normal person is. With Bipolar 1 you end up slightly slower than a normal person is after being used to being better than a normal person is. It makes it all the more confusing and frustrating in the realm of Bipolar 1 because you have no idea as to what a standard amount of energy and motivation is supposed to be in the first place! The questions “Is this normal? What is normal like? Is this how I’m supposed to feel?” and infinite variations on that theme come up on bipolar support fora day after freaking day because everyone in the bipolar spectrum thinks they are a unique snowflake and doesn’t bother to read any of the previous posts. The answer is – that is why you also need to see a therapist.
Furthermore these meds aggravate the ADD symptoms that come along with bipolar, so while you’re on the road to recovery in getting your mood swings in check, it seems like your mania isn’t getting much better because after all because the mood stabilizers are making ADD symptoms worse. Go on, compare an ADD self-diagnosis with a Mania self-diagnosis. Try to tell them apart if they didn’t have a title on them. Sometimes Provigil (modafinil), Strattera (atomoxetine HCl) or other medications need to be used to counteract the lethargy and ADD aggravation of anticonvulsants or lithium.
Be careful, though, both meds can trigger mania or seizures. The odds are such where it’s not all that likely, but it’s still possible for either med.
Anticonvulsants have a reputation for weight gain, but only four of the FDA-approved mood stabilizers, lithium, Depakote (divalproex sodium) (and the rest of the valproate family, but only Depakote has official approval to treat bipolar mania), Seroquel (quetiapine) and Zyprexa (olanzapine), have serious weight gain issues. Zyprexa and Seroquel are antipsychotics. None of the approved or off-label anticonvulsants has similar issues. Yet everyone freaks out over gaining weight. Well, except for the lithium and Depakote variants, anticonvulsants rarely cause you to gain weight. It can still happen, but anything can happen with psychiatric medications. The real culprits with weight gain tend to be the antidepressants. Doesn’t that cheer you up some? Topamax (topiramate)and Zonegran (zonisamide) will often cause you to lose weight, and people clamor for them, just as often with disastrous results to their mental health.
Most will mess with your memory and cognitive processes – at first. Although Topamax (topiramate)and Zonegran (zonisamide) are by far the worst offenders in that category. Notice something, the ones that make you skinny also make you stupid. Hence my labeling them as “supermodel drugs.” Unless you’re taking Keppra (levetiracetam) you will no longer experience the crystal clear thinking you often have with certain manias where everything makes total sense. Believe me, it’s a fair trade to no longer make the utterly stooooopid decisions you can make when manic that seemed like such good ideas at the time. Your credit report will thank you for it. It’s just that you will be stupid about little things, like leaving your cell phone at home when you go out. Bipolar mania makes you stupid about big things, like buying 50 acres of bushland in Australia, like I did. All in all I’ll take the little stupidity of anticonvulsants over the grandiose stupidity of euphoric mania or the self-destructive stupidity of depression and dysphoric mania. Plus the stupidity of anticonvulsants lessens over time, while bipolar stupidity gets worse over time. I’ve found trace mineral supplements to help greatly lessen the impact of Topamax (topiramate)& Neurontin’s (gabapentin) stupid memory tricks, and the effect of trace minerals on memory is backed up by a variety of studies, mostly dealing with aging and strokes. I’ll be discussing this in more detail in a section on supplements I plan on writing.
Expect your dreams to be different. I can’t tell you how they will be different, just that they will be. Maybe they’ll be different in a good way, maybe in a really bad way (e.g. nightmares). Not necessarily forever, but for some time. Once I started taking Topamax (topiramate)my dreams changed to being a replay of what I did each day. That was it. The sequence was different, and it was like watching it on the world’s most boring TV channel, but that was it. What little I did each day was played out again each night for about a year. It was really difficult to tell when I was awake and when I was asleep. Previously I had the most baroque dreams you can imagine night after night. In Mouse’s case Topamax (topiramate)made her have the same freaking dream every night.
Trust me, nothing messes with your dreams like some form of antipsychotic or an anticonvulsant.
All of the anticonvulsants deplete you of folic acid. Which means you should take a folic acid supplement, right? Sure, but not too much folic acid, because according to one double-blind study done in 1967 with Depakene (valproic acid) and epilepsy, patients taking more than 1,000mcg of folic acid along with their Depakene (valproic acid) started experiencing increased seizure activity. There have been a couple more recent studies done that weren’t double-blind that were inconclusive. Does this apply to bipolar and to all of the anticonvulsant mood stabilizers? Maybe. Play it safe, take no more than 800mcg in folic acid a day in the form of supplements. That’s more than plenty to cover the depletion from the meds as well as aid in potential mood stabilization. If you’re pregnant and nursing, talk to your doctor extra long about this issue. Everyone should talk with their doctors about any supplement regardless.
All of the anticonvulsants also mess around with girly hormones, just to varying degrees. While you can expect things like menstrual cycles being disrupted and the like, or positive benefits like PMS or PMDD symptoms being lessened, if you’re taking birth control pills you must discuss the interaction of these meds with The Pill with your OB-GYN. You may need a stronger pill, a weaker pill, a birth control bill that works with different hormones, or you may have to ditch the birth control pill entirely and use something else. PMS and PMDD symptoms can just as easily be worsened as they can be improved. Oh, and guys, we have girly hormones too. The odds of our being affected are not as great, but it is possible. Topamax (topiramate), Tegretol (carbamazepine USP) and Trileptal (oxcarbazepine) are the worst when it comes to The Pill and your own girly hormones, while Lamictal (lamotrigine) can be interfered with by birth control pills or even your own monthly cycle.
This is something where your OB-GYN and your neurologist and/or psychiatrist need to be talking with each other.
They also mess around with our manly hormones. Tegretol (carbamazepine USP) in one study and the valproates in another are shown to be the worst offenders for men. Even women can have problems with valproates during puberty. Of course epilepsy itself is a huge factor in hormonal wackiness. So it’s little surprise that the anticonvulsants mess around with hormones. Again the other anticonvulsants probably play a part in hitting testosterone, but the popularity of Tegretol (carbamazepine USP) and valproates has them being studied more.
The anticonvulsants are the pickiest and most sensitive of all medications to interactions with other drugs, foods, vitamins, tobacco, the hormones of the menstrual cycle, the seasons of the year, and just about anything you can imagine. Lamictal (lamotrigine) is far and above the most sensitive of the anticonvulsants in this regard. Sometimes these things can make a med work better, sometimes worse. And if you’re on a cocktail, the same thing could be making one med work better and one med work worse. Take smoking, for instance. Lots of us smoke. Smoking actually makes Tegretol (carbamazepine USP) work better. Initially at any rate, but that’s just enzyme-induction fu. It lessens the effects of Topamax (topiramate).
If you drink alcohol expect a change if you mix booze and anticonvulsants. Like the dreams I can’t tell you what kind of change, just that it will be different. This applies to lithium as well. Maybe you’ll get drunk faster. Maybe you’ll be able to hold less liquor. Maybe it will take a lot more to get you drunk. Maybe it will feel different. Maybe it will be some combination of effects. One thing is fairly common – the hangovers tend to be a lot worse and last a lot longer. One person taking Trileptal (oxcarbazepine) reported a three-day hangover after a few glasses of wine one night. That’s an extreme case, but it illustrates the point well. I suggest that you abstain from drinking if you take anticonvulsants, or at least keep it to a bare minimum on just a very few occasions. Anticonvulsants and lithium are just too picky about booze to go mixing the two too often.
So even if you take your meds religiously, if you take anticonvulsants too close to when you ate it is quite possible that they will vary in efficacy from meal to meal. This is where it helps to be slightly autistic and cook once a week and eat the same thing day after day at the same time and take meds on the clock between meals. Unless you’re supposed to take your meds with meals, of course.
Anticonvulsants are rash medications. No, they won’t make you go out and do stupid things without thinking about it first, quite the opposite. Instead you’ll be getting a lot of rashes. And fungal infections. And acne. Lithium can make you break out like it’s two weeks before the senior prom and you still don’t have a date. Since increasing my dosage of Neurontin (gabapentin) I need to stock up on antifungal lotion whenever it goes on sale, and I cover myself in the drugstore-house-brand version of Gold Bond medicated body powder every day. It helps. Check out the PI sheets and you’ll see the side effects. Now if you get either hives or you get a rash and a fever at the same time, it’s off to the emergency room with you. And bring all your meds in their bottles. But if it’s just a rash and no fever, then it’s off to the drugstore to get the appropriate ointment. If the rash doesn’t go away, or gets worse, call your doctor about it, as some of these skin problems can get serious, especially with the rashest of all the anticonvulsants – Lamictal (lamotrigine). But any anticonvulsant can give you Stevens-Johnson syndrome, a.k.a. the Lamictal Rash.
Stevens-Johnson isn’t the only rash that can kill you. Among others there’s Toxic Epidermal Syndrome (TEN). A.K.A. FLESH EATING VIRUS. OK, it’s really a flesh-eating bacteria, but everyone freaks out more with FLESH EATING VIRUS. TEN appears as a freaky rare side effect for many of the anticonvulsants, and it’s not so much that the anticonvulsant gives you the bacteria, but makes you way more susceptible to it. Believe it or not, those little buggers are around us all the time, ready to eat us for dinner. But our skin is usually in good enough condition to make us unappealing to them. Unless some anticonvulsant acts as a meat tenderizer. Jonathan wrote me to report he had to be treated for TEN after taking carbamazepine. Folks, any sort of skin weirdness combined with a fever needs medical attention if you’re taking an anticonvulsant.
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.
In any event consider going hypoallergenic if starting anticonvulsant therapy. Get rid of scented soaps, fabric softeners and similar products. Anything that will reduce the chance of a false-positive for a problematic rash will make your life easier.
Not only do they mess with your skin, they mess with your teeth and gums. It doesn’t matter that I brush and floss and use antiseptic mouthwash after each meal, I still get periods where my gums bleed. Other people report increased susceptibility to cavities, teeth that chip more easily and the like. Calcium supplements may help to prevent the chipping of the teeth, but everything else requires that you inform your dentist that you take anticonvulsants and that the side effects include these various dental problems.
For all that they mess with your outsides, they can mess with your insides just as much. All anticonvulsants carry the risk of aplastic anemia and agranulocytosis – in plain English they’ll screw up your red blood cells and white blood cells respectively. These are rare, but still real and potentially deadly risks. Tegretol (carbamazepine USP) carries the greatest risk for agranulocytosis, and it is recommended you have regular blood work for it. Should I point out that Mouse has had both of these problems? You’d have guessed it anyway. A couple of readers of this site have had one of each as well. So any weird bruising that you can’t explain (the aplastic anemia) or fever and constant infections (agranulocytosis) needs to be dealt with immediately. As in seeing any doctor today.
They will stuff up your nose and sinuses. At least someone on about.com’s bipolar support forum had a good explanation for this effect. Her take on anticonvulsants and lithium interacting with various endocrine systems explains everything – skin, teeth, hair, weight. Between the anticonvulsants and my minor dust mite and mold allergies I have no idea why I wake up each morning with a stuffed up nose. All I do know is that I couldn’t take Sudafed or anything else that contains pseudoephedrine, let alone real ephedra, as both are contraindicated for the bipolar and the epileptic. Not that I need to, my stuffiness isn’t that bad, but if yours is, no Sudafed for you if you’re taking these meds for either bipolar disorder or epilepsy. So what can you do besides blow, blow, blow your nose? Here’s a little Yoga trick I’ve found to be quite useful: Cross your arms in front of you as if you’re hearing something don’t like, only put one arm in front of the other and make your hands into relaxed fists, one fist resting in front of one elbow, the other behind the other elbow. It doesn’t matter which arm is in front first, but I start with my left arm in front of my right arm each morning for some reason. Then place your right fist in your left armpit, keeping your left fist on your right elbow. Now inhale and exhale slowly and deeply through your nose. You’ll start to feel your left nostril and sinus clearing. Keep breathing until that side is clear. Then repeat the process for the right side. I do this once, sometimes twice a day and I don’t have to keep blowing my nose so often, just first thing in the morning to clear it out prior to doing my little Yoga trick.
And it that’s not enough for you, there’s always the nose enema. I’m sorry, the very idea of this thing this freaks me out to know end. It’s just a simple saline solution in a little bulb that you squirt up your nose to irrigate your sinuses. It worked for Mouse, it’s worked for a few correspondents of mine and I don’t ever want to see or read about anyone using it ever again. I know it works. You can get it in a drug store. But for me – ick, gross, don’t tell me about it!!!
And to cap it off, they mess with your hair. The valproate and lithium families are the worst when it comes to hair interaction, but all anticonvulsants can change the nature of your crowning glory. Hair thinning is the most popular side effect, especially with lithium and the various flavors of Depakote (divalproex sodium). But they and other anticonvulsants can also cause your hair to curl when it was straight, straighten when it was curly, frizzle, or even get thicker and reverse baldness. When it comes to anticonvulsants, damn near anything is possible. They haven’t done anything to my hair, it’s as out-of-control as ever. Every day is anime hair day. Trace mineral supplements may help reduce the impact on your hair, but the studies I’ve found indicate that they won’t do squat for your hair. You should be taking them anyway for your memory and to help improve symptoms, so any work they do with your hair is just an improbable bonus.
SUDEP (Sudden Unexpected Death in EPilepsy) and status epilepticus
If you look up any of the anticonvulsants / mood stabilizers you might see one very frightening side effect: sudden death.
OK, calm down now.
If you’re taking these for specifically for bipolar, migraines, neuropathic pain or any other non-seizure disorder-related wackiness, sudden death is just not going to happen. At least not because of those specific illnesses and not because of the anticonvulsants. Other illnesses and/or other meds, that’s another story. This page is primarily for those of us who live in Epilepsyland. But y’all should read this page anyway, just to put some of your side effects in perspective.
Those of us taking them for epilepsy actually have to deal with this calculus, the odds of which anticonvulsant is going to make it less likely for epilepsy kill us in our sleep. Or just at some random time. The deal with the most terminal of side effects is Sudden Unexpected Death in Epilepsy (SUDEP). You’ll probably want to read that page at some point, as it’s the most information I’ve seen on the subject. At least non-hysterical information. Thus a source for a lot of what you’re going to be reading here. Dr. Devinsky is the author of my current favorite book on epilepsy Epilepsy: Patient & Family Guide (see the dead tree references below). It’s the only book in my collection to state the hard truth – epilepsy kills.
As for that sudden expected death, in the PI sheets that is just written up as good old status epilepticus (more on that later). In real life that also includes accidents because of seizures (drowning in a bathtub is popular, just like Tracy Pew died). Or suicide. Or other violent behavior that can turn out very badly. Fortunately all the research I’ve been doing shows that you have to be in a real freaky-deaky state, and not just a run-of-the-mill complex partial seizure, to get violent against people. So that’s something at least. It kind of puts to rest the somewhat pervasive idea that the prisons are full of people with epilepsy. That has not been been true for quite some time. Although, as with any study, you can match it with another presenting conflicting data. Note that the latter was self-selecting.
Anyway, SUDEP is a very rare event that usually happens to people with epilepsy who experience nasty tonic-clonic seizures. There’s a whole bunch of factors involved in calculating the odds:
Guys are almost twice as likely to drop dead than girls (7:4)
You’re most likely to die between the ages of 20 & 40, peaking between 28 & 35.
If you drink heavily, you’re more likely to die.
In this case ignorance is not bliss. The developmentally disabled (IQ under 70) have higher SUDEP rates.
You don’t keep your symptoms under control, you’re more likely to die.
Generalized seizures – that’s the big factor. Generalized nocturnal seizures – really big factor. Generalized seizures that started at a young age – oh boy. Generalized seizures going on for more than ten years – make sure your will is up to date.
As usual the Brothers and Sisters get the short end of the stick. Rates of SUDEP are higher amongst the Black population than the White population.
Right side temporal lobe issues have a greater risk than left side. There are reasons why my will is up to date, let me tell you.
You’re not med compliant or you’ve suddenly changed meds – watch out. The same applies if you do something stupid like quit smoking cold turkey when on anticonvulsants. Talk to your neurologist first and go for patch or nicotine gum reduction if and when you decide to quit smoking. It can make a huge difference in the clearance of your meds.
Similarly, if you suddenly start smoking more for some reason (e.g. you’ve hit a bad patch and hit the smokes more, or suddenly acquire a taste for cigars). Again a sudden change in how much you smoke will make a big difference in the clearance of your meds, and it’s just like messing around with your dosage unexpectedly.
The problem with a drastic change in one’s smoking habit is likeliest to cause a problem when dealing with one or more of the enzyme inducing antiepileptic medications (e.g. Tegretol (carbamazepine), Trileptal (oxcarbazepine), Dilantin (phenytoin)) or one of the meds they effect (e.g. Lamictal (lamotrigine), Topamax (topiramate)).
You have concurrent brain funkiness that indicates hyperactivity in some regions of the brain – bipolar disorder, migraines, stuff like that. Uh, yeah.
If you’ve had a recent significant increase in seizure activity and have a bunch of other risk factors – get to a neurologist right the fuck now!
A study I recently stumbled across supports the idea that taking anticonvulsants, new or old, and keeping your seizures under control is more likely to prevent SUDEP or status epilepticus than cause either. The drug companies put the incidents of deaths by people taking their meds in the PI sheets as a cover-their-asses policy. Granted, people in Epilepsyland do have paradoxical reactions of all sorts to medications, just as the bipolar do. But the odds of a med killing you from SUDEP are a bajillion-to-one.
While there’s some promise shown in using a pacemaker to prevent SUDEP, given that a majority (maybe 60-80%) of people dying from SUDEP do so because they couldn’t breathe for some reason or another (e.g. my wacky seizures that prevent me from breathing for 10-15 seconds- I’m sure that’s what will eventually kill me one night) the pacemaker thing isn’t going to help all that much. Heart issues of various sorts accounted for, at most, a third of the deaths.
I promised I’d discuss status epilepticus. It’s been traditionally defined as “30 minutes of continuous seizure activity or a series of seizures without return to full consciousness between the seizures.” That’s pretty much enough to fry your brain somewhat, if not kill you. These days the bar for status epilepticus has been lowered to five minutes. Pussies. I’d be wandering around in circles having complex partial seizures for an hour or so before I finally got an ass full of liquid diazepam. Repeatedly. OK, I was sort of conscious during those times. Read my blog entry from 21 June 2004 (Happy Solstice!). Five fucking hours of epilepsia partialis continua. Including an hour’s worth of a Jacksonian March.
Now if you’re talking tonic-clonic, no one should be having one of those for more than a minute before heroic action is taken. It takes days to recover after a big one like that. I’d hate to think of what five minutes, let alone thirty would be like.
There are all sorts of non-epileptic reasons someone could go into status. Brain tumors, severe alcohol withdrawal (break out the Tranxene!), diabetic weirdness, electrolyte weirdness, it goes on and on. But if it’s from epilepsy there are reasons that are similar to SUDEP:
Noncompliance with your goddamn meds.
Boozing it up regularly.
Unlike SUDEP, status epilepticus tends to hit at the extremes of ages (i.e. the very young and very old).
Bad freaking luck.
There’s also a high rate of status after head injuries. That’s why you see kids with certain types of seizure disorders wearing helmets all the time.
Status epilepticus is fatal about 20% of the time. In the other 80% there are times when you just wish it were fatal.
Basically death just sits on our shoulders, and when you’re epileptic you have to enjoy every freaking day, because it may very well be your last. Our mortality rate is 2-3 times that of the general population, between the seizure-related accidents, the suicides, the meds getting screwed up, SUDEP and status epilepticus. Bipolar isn’t the only condition that leads to freaky reaction to meds, epilepsy has its share as well. All of the anticonvulsants are suspected to very rarely make seizures worse, really worse, and going from deep sleep to rib-cracking, concussion-inducing spazzing around can get worse?!? Sure! 20-30 minutes of continuous seizing that doesn’t respond to any treatment at all! We can understand how that can kill you. If you’re epileptic, this information is something you may want to consider.
I honestly don’t think that the meds really have that much to do with making SUDEP or status epilepticus more likely. On the contrary, I go along with the study referenced above, that taking meds consistently and keeping your symptoms under control make either condition less likely. For adults at least.
On the SUDEP side of things, while it still happens with meds, any increase in SUDEP rates because of meds as indicated on a PI sheet is more likely a statistical aberration. When you’re taking your meds you’re obviously aware that you have epilepsy and you’re doing something about it. Any sudden unexpected death suddenly has an explanation. There are people walking around with undiagnosed epilepsy who may be dropping dead from SUDEP and it is never explained in that unexplained way.
And if you’re not taking your meds consistently, then you’re just asking for trouble.
The reports on status epilepticus show that it’s often the first time someone gets medical attention for epilepsy. As someone who had a lot of issues with doctors after my nasty lithium nightmare, and who had plenty of absence seizures that were never addressed, I wonder how many times those were really the first seizures they had. So when you do the calculus of SUDEP and status epilepticus rates for a given med, consider that they strike the unmedicated in full fury as well, then factor in your quality of life.
If anyone who doesn’t have epilepsy has read this far, maybe you can understand why Kassiane or I get a bit snarky with you on the Crazy Talk forum when you complain about some vanity side effect (e.g. gaining ten pounds, acne, that sort of thing). If we’ve recently had a seizure and our breathing or our heart rate got a bit weird, keep in mind, we stand a running 1% chance a year of just dropping dead from our epilepsy. We’ve each got a lot of combined high risk factors for SUDEP.
So remember fellow epileptics, be thankful for every day you wake up. Live each day to the fullest, with no regrets and try not to be a too much of a jerk, for it very well may be your last.
If you’re the survivor of someone who died from SUDEP, status epilepticus, or any of the vast number of ways to die from Epilepsy, you’ll want to check out our page of epilepsy support groups. Some of them deal with issues of surviving death from epilepsy.