Has anyone been prescribed Topamax purely as a sleep aid?
February 11, 2013 9:13 AM   Subscribe

My pdoc prescribed me Topamax as a sleep aid. I do not have epilepsy or migraines, which Topamax is usually prescribed for. I have searched Crazymeds and a couple other drugs forums and no-one has ever mentioned it being prescribed purely as a sleep aid. Oh, and it doesn't even work.

Long story: I have bipolar and take Lamictal and Wellbutrin. The latter doesn't spin me into mania, luckily, but it works wonders in keeping depression at bay. I was taking Ambien for sleep for quite some time, but it stopped working, so my pdoc switched me to Seroquel. That made me gain weight and gave me horrible hunger pangs - I could eat and eat and EAT until my stomach burst and still feel hungry.

Obviously the Seroquel was not sustainable, so I weaned off. I asked my pdoc what would help me sleep but not make me gain weight, and he prescribed Topamax. I did some research and found out that 1) it's not normally a sleep med, 2) it doesn't even make you feel sleepy half the time, and 3) is known as "Dopamax" for good reason. I did try taking it at the lowest dose (25 mg) and got nothing but sore feet. No sleepy-byes.

Right now I am working very hard on sleeping without any drugs at all. So far an air purifier, Breathe Right nasal strips, avoiding caffeine after 10 AM, taking my Wellbutrin before 10 AM, and listening to soothing music have all helped. I do so much better at staying asleep. It's falling asleep that's still tricky. I've stayed awake tossing and turning for two hours. Not fun. And I refuse to sleep in (that's a terrible habit, AFAIC, that I do not wish to start. Besides, I love being up with the sun).

When I asked my pdoc if I could resume Ambien just as needed (since I'm really trying hard to train myself to sleep) he said no, it "disturbs sleep patterns." And Lunesta is a no-go because Kaiser doesn't cover it and pdoc says "it doesn't work." I wonder if he is thinking that I am a drug seeker (oh horrors!), but if that is so why wouldn't he say something?

So - tl;dr: Anyone find that Topamax works purely as a sleep aid (since I don't have migraines or epilepsy which it is usually prescribed for)? Any chronic insomniacs - I've been one since childhood - successfully sleep without pills? Is it time for a new pdoc and maybe a neurologist or sleep lab test? (I did take a sleep test, one of those take-home kind, and it didn't detect sleep apnea). Or can I just take heart that we need less sleep as we age? (I am a post-menopausal woman.)
posted by Rosie M. Banks to Health & Fitness (23 answers total) 1 user marked this as a favorite
Response by poster: Oh, and I forgot to add: Trazodone is a no-go. It gives me horrific night terrors and turns me into a zombie the next day. If I could take the stuff, I would.
posted by Rosie M. Banks at 9:30 AM on February 11, 2013

Best answer: I was tried on this for migraine and found it activating. It was also supposed to be some sort of miracle weight loss drug at some point.

Get an actual sleep lab test.
posted by availablelight at 9:35 AM on February 11, 2013

My wife was on it as while and she did sleep a lot while taking it in addition to the other pernicious effects.
posted by nolnacs at 9:57 AM on February 11, 2013

I am a post-menopausal woman who is also taking Wellbutrin and Topamax. I take Ambien for sleep and have for years. Ambien has never stopped working for me, but if I take it within 2.5 - 3 hours of having any kind of food, it doesn't work at all. Are you always taking the Ambien on a completely empty stomach? It's hard to do sometimes if you want to eat dinner later than 7pm and go to bed at 10pm.
posted by miaou at 10:06 AM on February 11, 2013

I was on Topamax for a few years in high school to control some severe non-migraine headaches.

Not only did it not work for the headaches, it made me really, really depressed. I figured I was just depressed because I was a teenager with controlling parents stuck in a town I hated at a school I hated, but then I stopped taking it (without consulting my doctor) and after a couple weeks I stopped feeling like I wanted to die. I don't know if this is common, but personally I would not let anyone I cared about take it unless they needed it (and it worked) for their epilepsy or migraines or whatever.

I do not recall it making me tired when I took it. I also do not recall losing any weight.

I don't know what to tell you other than that if you stick it out with the Topamax, maybe keep a journal or something and pay close attention to how you're feeling.
posted by phunniemee at 10:07 AM on February 11, 2013

I have been on Topamax for some time now, and it seems to me that the side effects would weigh against one taking it for a sleep aid. I did sleep like a log the first six months I took it, but that effect gradually faded. So did the weight loss effect, although I certainly did lose for a while. I'm now back to where I was before, if not a few pounds heavier. Oh, bacon cheese burgers, why must you be so delicious?
posted by backwards compatible at 10:19 AM on February 11, 2013

By p-doc do you mean psychiatrist or primary care doc? Why don't you call and ask the doc about it?
posted by discopolo at 10:44 AM on February 11, 2013

Response by poster: Pdoc = psychiatrist.

I was prescribed the Topamax after an actual in-office visit with the psychiatrist, not a phone consult. He assured me that it was perfectly safe, I could take as much as I want, and it would make me lose weight, too. Then I got home and read up on all the side-effects, that it was NOT normally prescribed as a sleep aid even off-label, and then I started wondering WTF. (I have to wonder if he thinks I am a drug seeker for asking about going back on Ambien or trying Lunesta and that is why he's throwing all this weird off-label stuff at me.)

My next step is going to be a sleep lab. Kaiser does not do sleep labs - it gives you an in-home test to take consisting of a thingamabob that fastens around your fingers. I suspect it's not as accurate as a full in-house lab test. I have been reading articles and a book (Sound Sleep, Sound Mind) by a Dr. Barry Krakow, who states that a majority of sleep-onset insomnia is in fact caused by sleep-disordered breathing. Here is the New York Times article. FWIW, the Breathe-Rights do make a difference.

I'm going to: tell my doc that the Topamax isn't working for what it's meant to do, and I'm just going to go without any prescription sleep meds for a few months to see if I can retrain myself to sleep like a normal person. And then find out how much it will cost to go out-of-network for a sleep lab test. And then if THAT doesn't pan out, back to the doc.
posted by Rosie M. Banks at 11:10 AM on February 11, 2013

Maybe he prescribed Topamax because you had been complaining of the hunger pains with the Seroquel? One of the other uses of Topamax is prescription by psychiatrists to bulimics/binge eaters to help stop those urges.
Either way I don't recommend that drug. It can cause some pretty strange side effects, including not being able to recall specific words. When this happens to a client, many psychiatrists I know call it, "a topomax moment."
Also fwiw it has been reported to cause seizures. Bad times.
posted by fireandthud at 11:12 AM on February 11, 2013

Best answer: There are so many options for sleep drugs. If your doc doesn't have 8 next possible steps you should be surprised and skeptical. My doctor has mentioned everything from valerian and melatonin to Ativan (really helpful for me because often it's worry keeping me up) and its class, ambien and its class, Benadryl, etc. he was a kick ass doctor (wish I could still afford him) who kept up to date with all the research, including international research. He never mentioned topamax. It sounds like your doctor might be focusing too heavily on the weight component. There is one drug I ended up not even trying because it was supposed to increase appetite, but since you don't actually want a weight loss drug you should have a lot more options than it sounds like he's presenting.
posted by Salamandrous at 11:19 AM on February 11, 2013

Topomax and it's side effects were worth it to control my migraines, but:
A) I took it 2x a day, once when I first woke up without any drowsiness.
B) you have to rotate up and down on it-you don't just take however much you want
C) the side effects are real: weird tingling in hands, aphasia, typing/writing words out of order, not sweating much.
I was on what is considered a high dose for migraines (100mg 2x day at the peak), but a low dose for epilepsy/anti-psychotics, and the side effects were REAL.
posted by atomicstone at 11:24 AM on February 11, 2013

and by "rotate" I, of course, meant "titrate" I blame both the auto-correct and my inability to notice it until the edit window closed. This was not a topomax error, but it's a good example of what it can feel like on "dopamax".
posted by atomicstone at 12:03 PM on February 11, 2013

Best answer: I have been on various psychiatric medication for two decades, including most of the drugs that you mention. Unfortunately, I have no personal experience with Topamax, though I have close friends who take it. I have never, ever heard of it being used as a sleep aid.

I don't wish to throw a wrench into the works of a possibly otherwise-functioning doctor/patient relationship, but many people do not know that the quality of psychiatric doctors varies widely. Extremely widely. Prescribing psychiatric medication is an art as well as a science, and not every doctor has mastered both aspects. Since you are relying on your doctor's knowledge and judgement, you may not recognize that you have an incompetent doctor until suddenly you notice they're not listening to you, or they're advocating something off-the-wall, like Topamax for sleep. In my opinion, that's a totally bizarre recommendation.

I have been on a medication that gave me symptoms like you experienced on the Seroquel. It was an absolute horror show, and people tend not to believe how bad it is unless they've experienced it, or they think you're just complaining about your weight. (I'm not sure if weight has been an issue for you, but it has been for me.) Most of the drugs commonly prescribed for depression/bipolar/etc are associated with long-term weight gain. Topamax is often prescribed as a counter-measure because it is one of the few safe medications with decreased appetite as a side effect. So I wonder if your doctor is hearing "eating issues" and responding with "Topamax!" even though you are asking about sleep.

Psych meds usually cause serious insomnia, unless your medications happen to be sedating, which most of them are not. Many doctors underestimate the importance of sleep. If you aren't sleeping, you are never going to feel good. It's very, very basic.

Doctors do not have a great selection of sleep meds at their disposal right now. Ambien's reputation has been going down the toilet recently and some doctors are afraid to prescribe it, even if that's the only one that works and you have taken it before with no problem. You have a right to sleep at night. Some doctors will try to give you crappy half-measures around the sleep issue because they're afraid to pull out the big guns, but you deserve to have this solved. Ambien is a fine drug if you do not have the side effects. Many people take it with no problem, myself included.

Your profile says you are in one of the major cities on the East Coast. I have had the best luck with doctors who are as high up the food chain as I can find, preferably associated with a respected teaching hospital, and who strike me as caring and informed.

Disclaimer: I am not a doctor or mental health professional. I am a patient who has been around the block a few times. These are my observations and opinions.
posted by gentian at 12:52 PM on February 11, 2013 [1 favorite]

Best answer: Just a data point: my mom was also prescribed Topamax for sleep (and found it ineffective) but had already been through a variety of other sleep aids with essentially no improvement so I did get the sense it was kind of a Hail Mary pass.
posted by en forme de poire at 2:44 PM on February 11, 2013

My husband also takes Topomax as a sleep aid.
posted by hydropsyche at 2:53 PM on February 11, 2013

Response by poster: Gentian: I am actually on the West Coast. I am insured through an HMO, which is great when it works but for mental issues - not so much. I'm going to find out just how much it will cost me to go to an out-of-network sleep lab, and then, if I can afford it, get a sleep test.

I worry that trying to be a good advocate for my sleep will translate as "drug seeking." As it is, I wonder if I did something that inadvertently set off my doc's druggie-dar because he was perfectly happy to keep renewing my Ambien prescription for years, until I told him that it wasn't working so well anymore. And I have taken Lunesta before, prescribed by my oncologist. As it stands, I don't think my primary care doc will give me anything without going through my p-doc first - when I told her about my horrible weight gain and cravings from the Seroquel, she just referred me to him.

I don't know if there is another psychiatrist in my HMO accepting new patients and who isn't an hour's drive away. And if I change doctors, it just might get me slapped with the dread "doctor-shopping drug-seeker" label.

So. I'm going to try and get a sleep study and give the "sleep without prescription meds" a month or two. Then, if the sleep study doesn't help and nothing else helps, I'll go back to my doc and see if I can get something that WORKS (in my case Ambien or Lunesta). My current doc has actually been pretty decent and worked well with me until recently when he for some reason has decided that Ambien and Lunesta are EVIL and now has seemingly gone off the deep end with exotic sleep meds.

I'm also going to ask around on the Crazymeds site to see what they might think. Thanks everyone for your input - it was very helpful!
posted by Rosie M. Banks at 3:33 PM on February 11, 2013

Best answer: Okay, I have bipolar too. I've been on Topamax for roughly seven years. I'm gonna guess here and say that you weren't prescribed it strictly as a sleep aid but to calm your racing thoughts so you can sleep. The Dopamax side effects disappear after a while. Give it time.

Topamax is the ONLY medicine that's worked for my mania. The. Only. One. And I've been on the med-go-round for many, many years. I'm actually on both Topamax and Seroquel (as well as Welbutrin) and that cocktail has really been a mind-saver for me.

Anyway, I just wanted to suggest that you might look at Topamax as, not a sleep aid, but another ingredient in your crazymed cocktail.
posted by patheral at 3:44 PM on February 11, 2013

Not really answering your question directly, just some anec-data, but mirtazapine knocked me out in about 30 minutes for the first month or two. I also had very intense dreams, which may not be your cup of tea. After about 2 months, the sedative effect wore off, but I still have intense dreams (which is generally a good thing for me). Crazy Meds summary seems pretty accurate.
posted by Diag at 4:17 PM on February 11, 2013

I doubt you'll be viewed as a drug seeker unless you have a history of drug abuse. I don't have a drug abuse history and I push pretty hard about sleep. I have just spent too many nights sitting up until 6 AM and I refuse to accept it anymore. I view it as a quality of life issue.

When I was looking for a new doctor, I tried several different ones. I was just upfront about the reasons I didn't want to see the previous doctors again and nobody ever raised an eyebrow about it.

Your mileage may vary on all of this. I'm just giving my perspective as someone who's been a psych patient for a long time and experienced some similar issues. It's hell, I know. Good luck out there.
posted by gentian at 5:09 PM on February 11, 2013

Response by poster: Patheral: I hadn't thought of it that way; maybe I will give the Topamax another chance after all. I wish my pdoc had said that the Topamax was for my bipolar and not just for sleep, though; he said nothing about it helping my bipolar (for which I'm on Lamictal, and that is an enormous help - one of the key meds that keeps my brain cooties at bay).

And, FWIW, it was my shrink - a Psy.D - who diagnosed my bipolar and helped get me on the correct cocktail for my particular brain cooties. If my shrink weren't on a long vacation, I'd be going to him with this problem as I'm sure he'd be of more help.

My next question on the green will probably be about sleep labs! Thanks again to all who answered. You helped a lot.
posted by Rosie M. Banks at 5:27 AM on February 12, 2013

Best answer: So you don't have to wait a week- I have experience with east coast Kaiser, sleep tests, and many of the meds discussed above! (I tried topomax for headaches, and it removed all appeal from eating and turned my anxiety up to 11, so not great for sleep for me.)

I did the take-home sleep test after many months of exhaustion and non-restorative sleep. The test was negative for apnea but I was referred to a sleep specialist within Kaiser, who suspected I had apnea anyway. He authorized an overnight study in a sleep lab, followed by an all-day study (MSLT), for which my co-pay was $50 per test, $100 overall. The authorization was very quick, but sleep labs in my city have long waits, so it was 6 weeks between authorization and the actual overnight study.

In the end, the overnight didn't reveal apnea or any other physical reason for excessive daytime sleepiness. The sleeping pills I've tried were overly sedative or didn't give me energy the next day, and my bpII doesn't play well with stimulants (e.g. provigil). I've had success with acupuncture, which I was very reluctant to try, and I only did after exhausting western medicine options.

Good luck!
posted by casualinference at 6:26 AM on February 12, 2013

Response by poster: The good news is that my primary care doc did send in a referral for me to get an overnight sleep study in a lab. Yay! That was easier than I thought. The bad news is that it's going to be a bit of a wait, but that's to be expected since it's non-urgent.

Meanwhile, I am taking the lowest Topamax dose and taking it with my Lamictal in the evening, not the morning, and that is helping somewhat. Thankfully, the "Dopamax" effects haven't taken hold except for a few incidents.

I still worry that I got myself put on some kind of drug seeker blacklist with my pdoc, and I am not sure how to bring that up.

Thanks for all your help!
posted by Rosie M. Banks at 9:08 AM on February 26, 2013

Response by poster: Update: I got my sleep study. I have "long sleep latency" (meaning I take a long time to get to sleep - which I already knew) and severe sleep apnea.

I'm now pretty much convinced that treating this physical problem will improve my insomnia, since I bet it was apnea at the root of it all along - since I'm female and small it's easy to overlook (not the "stereotypical" fat middle-aged male apneic). So now I'm going to get an appointment for a CPAP mask and titration and I hope this will help solve my insomnia.

Marked resolved. Thanks for your help!
posted by Rosie M. Banks at 2:27 PM on April 15, 2013 [1 favorite]

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