choose your own medication adventure
March 7, 2017 5:56 AM   Subscribe

My psychiatrist has suggested one of the following drugs to treat bipolar II that hasn't responded well to previous treatment: olanzapine/fluoxetine combo (symbyax), aripiprazole (abilify) or sodium valproate (depakote). She told me to go away and do some research, so: tell me about your experiences with these medicines.

Things that have been tried so far and haven't worked: lamotrigine (I got a-rash-but-not-the-rash both times I tried it, including titrating really slowly, which is apparently enough of a skin reaction that it's not an option again; wasn't on it long enough to know if it was going to work mood-wise), quetiapine (made me more intently focused on hurting myself than I'd ever been in my life) and lithium (got me out of a hole initially but didn't manage to keep me out of that hole, plus I got a bunch of bonus diseases [like psoriasis! in my ear canals!] from taking it).

It's clear now that lithium isn't doing a whole lot mood-wise any more, plus it's possible that I'm going to need to take long-term anti-inflammatory medication for an unrelated chronic pain issue that I'm also getting treated at the moment, which is less of an option with lithium in the mix. And, frankly, being in less pain would probably be helpful with the mood stuff. Also I would really like not to have psoriasis in my ear canals any more.

In terms of what we're actually trying to treat, I haven't been properly hypomanic since 2014 or so, but I keep having bad episodes of depression every 1-3 years (6+ months long, significant impact on my ability to stay functional & on quality of life, etc.) and the time in between episodes is increasingly dysthymic rather than back-to-full-functionality recovered. I haven't been able to do the creative stuff that makes me feel like an actual human rather than a sack of meat & obligations in a long time. I feel ground down and not at all optimistic about treatment or the future. (But that's also the disease talking, right?)

I'm in therapy and I'm planning to do other research beyond this, but I always like hearing from actual people about their experiences of various drugs because a lot of the other information available is just lists of side effects that I assume I will inevitably experience all of.

Currently my rough order of preference is: olanzapine + fluoxetine, then valproate (with birth control & extremely low likelihood of getting pregnant anyway), then aripiprazole, but that's entirely based on nebulous feelings rather than actual data. I'm also aware that my current mood is colouring everything futile & pointless, so some clear-headed info & experiences would be very welcome.
posted by terretu to Health & Fitness (14 answers total) 3 users marked this as a favorite
My wife spent many years on a lithium + abilify cocktail. The problem was that the VA kept increasing her dose of the lithium, until she was literally getting lithium poisoning (I read off symptoms from online, sent her to go do a walk-in, the doc heard the list, turned gray, sent her to the front of the lab line, and then pulled her off the lithium, but kept the abilify).

They put on her depakote, and for her, it's been a wonder. She's stable - she's only had 1 severe downswing in 3 years, which is a huge improvement, and no manic swings (still some manic tendencies - when something needs to happen, it's got to happen right now), but it's so much better than the every day is a roller coaster that was the end of the lithum. Side effects have been continuous spotting (so they put her on depo, which is just hilarious - even if two women couldn't not get each other pregnant, between me being fixed and her being on depo) and hair loss, and it's still better than the lithium. For her, abilify + depakote is the wonder combo.

Good luck in finding a cocktail that works(ish) for you!
posted by joycehealy at 6:14 AM on March 7, 2017

If I recall correctly Abilify was sort of a dead end for my partner - no major side effects but also no major mood improvement. (His bipolar sounds kind of like yours, more depressive than hypomanic, and getting more so as the years pass.)

I hope that you find some combination of the above that works well for you, but FWIW, you might also keep Viibryd in your pocket as another option if your current round doesn't turn out to be helpful. I think doctors tend not to go straight for it partly because it doesn't have a generic so it's Annoyingly Expensive, but it's been a really good drug for my partner's variant of bipolar, enough so that we live with the Annoyingly Expensive rather than getting back on the drug-cocktail-merry-go-round.
posted by Stacey at 6:32 AM on March 7, 2017

Quetiapine has worked wonders for me (and lithium before that), so I'm not too helpful there, but have you checked out CrazyMeds? It's been very, very helpful to me over the years, and I don't think I ever even posted, just sucked up the knowledge.
posted by fiercecupcake at 6:46 AM on March 7, 2017 [1 favorite]

(Also, holy carp, psoriasis in your ear canals? You poor thing.)
posted by fiercecupcake at 6:52 AM on March 7, 2017 [1 favorite]

I gained a crazy amount of weight on Abilify, and it didn't really help much at all. I don't recommend it.
posted by mollywas at 8:19 AM on March 7, 2017 [1 favorite]

This is insane. Your doctor doesn't want to spend the time learning about your individual experiences and needs enough to make a solid recommendation on the best option for you, and instead tells you to pick one of three entirely separate medications, leaving the burden of success or failure on you, when you have no background in medication management, medical practice, or pharmacology, and are limited by inevitable confirmation bias?

Gathering information and being an informed patient is all well and good, but doctors are doctors for a reason, and this one is not doctoring. My clear-headed response is to dump your doctor, and find one who will take your medical history, listen to your concerns, and make the best choice available to you based on his or her extensive medical knowledge and experience, which you do not have, nor do strangers on the internet.
posted by juniperesque at 9:28 AM on March 7, 2017 [22 favorites]

+1 juniperesque. Your psychiatrist should be able to roughly say, "Here are the strengths and weaknesses of each choice," or at least (like my first one) say, "All three of these might work, but evidence-based psychiatric pharmacology is so young that we have no way of knowing which one, and it'll take a month, minimum, to figure out whether each is working. That said, in my experience, generally, people in your situation have benefited from choice 1 most often. It might also help with your [other mental thing]." He said that on my first visit after taking a thorough medical history.

Strangers on the internet are just anecdotes, and they skew toward people who are not having success with whatever medication they are talking about. I've never angrily posted about Lexapro because it works fairly well for me.

You should probably drop this doctor soon, but until you find someone else, call the doc back and say, "The research I did is all over the map. In your professional opinion, what's the most likely to work well for me, given my problems? I recognize that it's not an exact science, but the amount of information on the Internet is overwhelming."
posted by radicalawyer at 9:38 AM on March 7, 2017 [1 favorite]

This is insane. Your doctor doesn't want to spend the time learning about your individual experiences and needs enough to make a solid recommendation on the best option for you, and instead tells you to pick one of three entirely separate medications, leaving the burden of success or failure on you, when you have no background in medication management, medical practice, or pharmacology, and are limited by inevitable confirmation bias?

I don't know - I told my psych that I hadn't responded well to SSRIs and he gave me a list of three other options to research, and I really appreciated that. All of the options were things he thought might work for me, but since trying a new antidepressant is a total crapshoot anyway, he wanted me to look into them in order to weigh which side effects were going to be more and less acceptable to me, what the medical literature said about them, etc. It made me feel like I was able to participate in my own treatment and that my concerns about side effects were valid. And the amount I wanted to know about each medication would have taken more than a full session to explain.

I think he gave me this option because he knew I was a person who managed my anxiety by, among other things, doing shit-tons of research in order to inform myself before making ANY decision, from what kind of kitchen knife to buy on up. He said that he didn't do the same thing for every patient, just the ones he thought would respond well to it.

I can't say if this doctor is doing that or if he just sucks, but it's not necessarily a bad thing that he let him do his own research.
posted by showbiz_liz at 9:58 AM on March 7, 2017 [6 favorites]

Response by poster: Thanks for all the responses so far. Couple of things to clarify:

This is the UK and the NHS, so I don't get to choose my doctor. You get assigned to the person whose specialism is whatever is wrong with you and they are your doctor. It's a rural enough area that she's also the first/primary private psychiatrist who comes up on a google search, because most private doctors here are the same doctors who would be treating you if you got an NHS referral, just six months earlier and for lots of money. The guy who took out my wisdom teeth privately (I have limited insurance through work which doesn't cover my other conditions as they're pre-existing) is the same guy who would've taken them out a year later in an NHS hospital. The medical system here also limits what drugs are available - I know lurasidone isn't licensed for bipolar here yet and non-generic drugs are extremely hard to come by.

I should also say that she's a pretty good doctor and we have a good relationship, she's more interested in getting me back to full recovery each time rather than just basic functionality, which is better than most of the other doctors I've seen, and she knows I read a lot about this stuff anyway. This suggestion came from a place that was more like, we've been through the best first line option and these are the three most appropriate next choices; have a think and see if one sounds like it would work for you more than the others. All three have the chance of some relatively severe side effects and I know what I tolerate better and worse in terms of side effects. It definitely wasn't a case of "I can't be bothered doing my job, you figure this one out." I am confident that if I still feel undecided by the time I see her again next week, she would happily make a recommendation or talk me through her thoughts and I will almost certainly ask her to do this before committing to a choice.
posted by terretu at 10:04 AM on March 7, 2017 [5 favorites]

Oof. I wish that you had access to a competent psych med manager, ideally a specialty pharmacist (but then, I wish I did, too!). I've been on all of those - and lamotrigine, and lithium - and I had bad experiences with all of them sufficient that I'm no longer on any of them. Definitely definitely definitely visit CrazyMeds and be willing to pull the trigger if you hit side effects that are sufficiently concerning. My family trends toward diabetes and metabolic issues, so olanzapine and depakote both made me balloon up, that kind of thing.

One weird side effect I got with Abilify that I don't think is common enough for you to worry about, but hey - I wound up going off it very quickly because I developed akathisia bad enough to land in the emergency room at an odd hour. So if that happens to you, you aren't imagining things! It was by far the most disturbing med side effect I've ever had and made me feel like I was losing my grip on reality, so if you get any weird side effects on anything ever, PLEASE don't be shy about telling your doctor.
posted by bowtiesarecool at 10:14 AM on March 7, 2017

No one is sure if I have bipolar or not, as I've never been manic or hypomanic, but my depression follows biplolar patterns more than MDD or dysthymia, e.g. lability, so in addition to antidepressants (which weren't really working) my doc has been using mood stabilizers as an adjunct.

Apiprazole and fluoxetine helped the depression that wasn't related to PMDD. Note: it made my urine smell like sherbet lemons, which was really weird.

Quetiapine and fluoxetine helped for about two weeks. I gained about a stone. And then I rebounded into a horrible depression and I stopped all of my meds.

My doctor and I agreed that the fluoxetine crapped out and we chose another SSRI.

Right now I'm trying sertaline and topirimate. It's only been a few days but I feel pretty good so far.

I think the important thing with psych meds is to titrate slowly to let your body adjust and avoid side effects. Like ultimately they want to get me up to 100mg of topirimate, so it's 25mg at bedtime for a week, then 25mg every 12 hours for a week, then 25mg in the AM and 50mg at bedtime, and then 50mg every 12 hours.

I have friends who swear by Depakote, even though it causes/d major weight gain.
posted by elsietheeel at 12:47 PM on March 7, 2017

I was on depakote for bipolar for a number of years, and it was fantastic for me. Stabilized me to the point where I've been unmedicated for...7 years? 8? Still under psych supervision, of course.

Downsides: lots of weight gain, and my hair fell out in clumps. (I have a lot of hair, so I didn't end up with bald spots, but it was unpleasant.) I also got shaky tremor-type things in my limbs that took a long time to go away after I was off the meds. With Depakote, you'll want your doctor to run regular liver function tests, because it can wreak havoc on that organ - my alcohol tolerance went /way/ down on that med and has never really recovered.

That sounds like a lot of bad, but overall it was solidly the best med experience I had. If I had to go back on meds, I'd start there without hesitation.
posted by okayokayigive at 3:06 PM on March 7, 2017

A person close to me skews more toward the hypomanic/manic side, and olanzapine saved their life when needed as a crisis "holy shit so manic that we are nonfunctional" type med, but also then when taken long term seemed to push their mood too low and they became depressive. they believe (and their prescriber believed) that this was due to the olanzapine being overwhelming to their system and so it pushed them too low. just an fyi as you're considering - if you already skew more depressive it may not be as good a fit for you. that said, it can be somewhat of a miracle cure for some folks with bipolar disorder, it certainly was a lifesaver for my person.
posted by fairlynearlyready at 6:43 PM on March 7, 2017

Response by poster: Quick note on crazymeds for anyone who's reading this in the future - the site is currently basically unusable if you're using an ad blocker. This had me confused for several days (it doesn't mention this anywhere obvious on the site).
posted by terretu at 2:05 AM on March 8, 2017 [1 favorite]

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