Bipolar 2 on meds, in serious depressive episode--need your expertise

[electriclynx]

Hi friends, 

I just joined, though I've been lurking for years. Some background: I'm 26 years old and female. My diagnosis went from Major Depression at age 16 to Bipolar Disorder Type 2 about three years ago after I had a hypomanic episode and subsequent depression severe enough to get me back into treatment. No SSRI or SNRI antidepressants ever helped me (made things worse) and I have a family history of Bipolar Disorder, types 1 and 2. Since then I've tried a variety of medications--including Buspar and Latuda, the latter of which made me very sick (nauseated all the time, foggy, tired). Currently I take: Wellbutrin 450 mg, Lamictal 100 mg, Klonopin .5 mg PRN, and Neurontin 300 mg x 3 a day. I've been up to 300 mg of Lamictal. That gave me memory issues so I was on 200 mg for a long time. The NP put me on Neurontin and took me down to 100 mg Lamictal because I lost my health insurance, about 4 months ago. I don't notice much benefit from Neurontin but I'm holding out until I get better insurance. I'm waiting on Medicaid approval right now and unfortunately that means I'll have to find another doctor, which is very challenging here due to providers not accepting our state Medicaid. Also, I've been in therapy for the past 3 years but have cut down on that to 1 x a month. I had issues keeping my job and that has caused financial issues for me. 

For the past 2 or so months, I've been in the throes of a very very bad depressive episode. My depression is unlike unipolar depression because it's accompanied by agitation and anxiety. Although I can get out of bed and take care of basic things, I find working and concentrating difficult. I also feel like I need to distract myself by having someone around to talk to. I'm single and frequently can't get ahold of anyone so then I'm left to face my own mental problems alone. I feel incredible despair. I am often caught off guard by my own tears. I feel the need to self-treat since my medications aren't fully effective--though I know it's vastly better than without them. I drink but I try to keep it limited. I did struggle with an alcohol dependency earlier this year. I am prescribed one .5 mg Klonopin every day, but my NP won't actually give me that even though my therapist thinks I need it. They are part of the same practice. So I'm left to try to scrape by on what Klonopin I have, which can be really difficult. Overall, I'm just ineffective at my job and stricken with a profound sense of hopelessness and sometimes dysphoria. I've been dealing with this for 2 months and I don't know how much longer I can go on. I'm not actively suicidal. I just want to get better. But I know I can't handle this longterm. Unfortunately, BP for me is just an unending series of ups and downs with more downs than anything, and severe downs they are. This recent episode is the worst I think I've experienced in 10 years, though. 

I don't know where to go from here. I had a terrible year marked by relationships deteriorating, family health issues, job loss, and being hit by a drunk driver on 12/18/15. I have no strength left. My therapist suggested me going back on Latuda, but it's $900 a month and not only does it make me violently ill, but the insurance I have doesn't cover it (and I'm losing that insurance on Jan 1). Medicaid also doesn't cover it. And I just don't want to take it. It was very unpleasant. 

My dad has BP and I know that I have a lot of years left to deal with this. That thought is daunting. Please help me. I know my NP and therapist are best to advise but they're not terribly helpful right now and also I will have no insurance soon. It might be a while before I can realistically find a new doctor. I just need some thoughts to help me get through this, and maybe some thoughts on my med lineup.

Thank you.

 

Edited December 31, 2015 by electriclynx

[Wonderful.Cheese]

You should be able to easily qualify for a county clinic dr at a sliding scale fee. I used to have Medicaid. That's what I do. I have Medicare now. Just wanted to throw that out there.

I'm sorry if I missed something and if that was mentioned. I have trouble reading longer posts (concentration is shot). No fault to you, of course.

[lifequake]

I'm glad you joined CB.  I can really relate to your post (26 y/o, female, recently diagnosed BPII).

I am no expert on meds, but I wonder if you've tried other AAP's besides Latuda?  Finding a med which had already gone generic would likely be much cheaper.  Also, I am curious if you've tried lithium?

I will keep reading along and hoping you'll stick around the boards...

 

[Rabbit37]

I was going to suggest lithium as well, dirt cheap without insurance... I should know, as I don't have it right now. My cousin and her husband are both pharmaceutical reps, believe me, they encourage pdoc's to prescribe the "latest and greatest" meds without regard to cost. 

I would at least give it a try. As long as you drink plenty of water, there's really not much in the way of s/e's, maybe mild tremors. Risperdal is also a cheap AAP, worked well for me, except my prolactin levels got too high. 

Good luck, keep us posted.

[dragonfly23]

i have some luck with Seroquel,  I say some cus I am not particularly stable at the moment.   I did not cause weight issues for me and at higher doses I no longer experience grogginess.

[electriclynx]

Hello again, and thank you all for your replies. I'm sorry I haven't been around--I got very sick after New Year's and am just starting to feel better. And honestly I've been kind of overwhelmed. It can be hard to keep things going, you know? I let a lot of commitments slide when I feel this way. Also, I'm sorry for ending up writing a book in my first post. I feel like with all of us, there's probably a long treatment history to explain.

Wonderful.Cheese - I'm considering going outside of city limits to see if I can get some help from a clinic a bit farther away from me, as most of the ones in my city are booked. The clinic I'm going to now *just* did away with their sliding scale, but since I'm currently waiting on Medicare approval and uninsured, I can see them for a few more visits at that "time of service" discount. Also, not sure what you think about this, but since I'm on all anti-epileptics I'm considering maybe seeing an MD if I have to just until I find another provider. 

lifequake - Thank you. We should stay in touch, because it is a really confusing and frustrating thing to navigate, probably especially when you've first been diagnosed and are trying to figure out your cycles. Still working on that! Oh--and also the symptoms of your cycles. Depression is easy, but hypomania is so hard to be aware of. I've made a ton of bad, impulsive decisions in those states. Latuda is the only AAP I've ever tried. I saw my therapist yesterday and he recommended Risperdal, Geodon, or Abilify. If you (or anyone) has experience with those and BP II, I'd be curious. Of course the side effects scare me, but they seem to really think I need to be on one.

Rabbit37 - I haven't actually considered Lithium because it was never presented as an option. They pretty much immediately put me on Lamictal and I've been on it ever since. I think my NP has some kind of vendetta against it because when I asked about it she kind of brushed me off, saying that it wasn't a BP II med and it's "old." Do you feel like the Lithium evened you out on both ends or that it was particularly helpful for depression? I'm definitely open to it.

dragonfly23 - That's good to hear, because they were considering Seroquel for me at one point but I was concerned that it might impair my ability to work. I have a detail-oriented job and was already dealing with significant med-related fuzziness at that point. The diabetes risk scares me so much with AAPs. Currently I am a normal weight and have never worried about obesity or diabetes so maybe I would be less prone to that. 

General question: Were you guys able to find an AAP that didn't totally wipe you out mentally/creatively, or cause undesirable side effects like sickness? The thing that sucked about Latuda was that I had to plan my whole day around taking it and that was very draining. You all have made me think more also about whether or not I even need an AAP--maybe my mood stabilizer is the problem? Could be biased because I'm really scared of AAPs, though it seems like the only thing they want to do for me now. I really appreciate your responses and I feel less alone in this now.

 

[survivingbp]

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Edited August 25, 2022 by survivingbp

[jarn]

I've BP or SZA but I think my flavour of BP run to II, so...

Abilify - I took 30mg, then 20mg when I got bad akathisia, then ended up in the hospital with OCD symptoms.  Was taking such a high dose for psychosis though.  Akathisia was dose dependent, for sure.  I have fond memories of Abilify and would go on it again.  Don't remember much depression on it other than the OCD suicidality.  My husband takes Abilify (has ranged up to 15mg, currently on 7.5mg) in concert with Wellbutrin and Cymbalta for his depression and finds it helpful.  

Risperdal - Haven't taken, but took Invega, which is the active metabolite.  Lactated, but hey, I just took meds for that.  Great for moods, pooped on psychosis eventually.

Ziprasidone - took twice, first only for 2 weeks, so who can say.  Second time I was a mess because I was so, SO sedated.  Made Seroquel look like a stimulant.  I don't think my experience is the norm though.

[Wonderful.Cheese]

I can chime in. My advice though - don't fear the AP's and of course everyone reacts differently to different meds or ymmv! Good luck!

Abilify - I have taken this for nearly 10 years at 30-45 mg. It got me out of a year long state hospital stint. But it's not enough for my psychosis. (I have sza bipolar). So I also currently take 800 mg of seroquel xr. 

Risperdal - tried it twice. Once while in combination with abilify at another state hospital stint and once when full blown manic. Didn't work for me at all. I took like 6 mg. I also tried invega and took 12 mg. I was so freaked out that lactation was a possibility so I stopped if on my own. 

Geodon - tried it several times alone or with seroquel or abilify. Got up to 240 mg. It did not work for me and tended to make me very tired. Although I took it when full blown manic and then was not tired on it (actually it was the first aap I ever tried). 

I'll add seroquel. - this  is along with abilify the backbone of my med cocktail. I have been on and off it for years. It fully prevents full blown mania (although I can get hypo on it). Helps me sleep (although too much) and helps anxiety a bit too. I recently tried stopping it, ended up manic and was placed IP. Sad, because I had been IP free for almost 2 years. I've gained weight which I'm currently trying to work off. 

[electriclynx]

On January 5, 2016 at 4:58 PM, survivingbp said:

Abilify: I was put on abilify in hospital after an antidepressant induced hypomania where I tried to kill myself. It didn't help at all, to be honest. My mood dramatically improved, and I was laughing, expansive, maybe even a bit euphoric, but my thoughts were racing, I was busy planning for my future, I couldn't concentrate to do any work, my speech was incredibly pressured and I wasn't sleeping (but was paradoxically tired). I was told by my pdoc that I was hypomanic. Abilify also gave me blurred vision. 

Risperdal: I was prescribed risperdal to bring me down from the abilify induced hypomania, and it worked. Within one day, I was sleeping again, and within a week, the pockets of racing thoughts were gone. I was on a smallish dose - 2-3mg - but it was enough. I found that I would shake a lot on risperdal but I thought it was anxiety at the time, but who knows, it could have been a side effect. I was feeling very depressed on risperdal and was suicidal, and risperdal didn't help. My suicidal ideation was bad enough that I needed to be admitted again. 

Geodon: I've been on geodon since being diagnosed as BPI, so maybe this isn't applicable, but mania's a spectrum anyway, so maybe this will help? I actually like this med. I feel like myself again, which is something that other meds (hello, Zyprexa) took away. I still have pockets of euphoria, which I like, but I'm not sure if 160mg of geodon is enough to contain my mania, as I'm also taking a very small dose of another AAP at the same time. No side effects on geodon, to be honest, but I've been somewhat depressed (though not severely) on a smaller dose of geodon and a larger dose of my other antipsychotic. But on geodon I feel like myself again, which is something I never thought would happen. On other meds, I didn't realize what I was missing. So geodon has been the magic med: no side effects, doesn't wipe me out, lets me keep my personality. Let's hope it keeps on working. 

Hi survivingbp, 

I'm glad you found your magic med. I hope it keeps working for you for a long time! 

What other AAP are you on in addition to Geodon? Did you find it difficult to consume as many calories as you have to take with it, and/or did you experience akathisia? On Latuda, I would get awful agitation and feelings of doom and terror to the point that I'd feel suicidal every night (akathisia?), so I had to go to sleep immediately after I took it, but I also had to take it with so many calories or I'd throw up and that required some planning/hampered my social life. I am optimistic because I've heard other people say good things about Geodon. It seems to be associated with fewer side effects (but that's just what they tell me). 
 

[electriclynx]

On January 6, 2016 at 7:30 PM, jarn said:

I've BP or SZA but I think my flavour of BP run to II, so...

Abilify - I took 30mg, then 20mg when I got bad akathisia, then ended up in the hospital with OCD symptoms.  Was taking such a high dose for psychosis though.  Akathisia was dose dependent, for sure.  I have fond memories of Abilify and would go on it again.  Don't remember much depression on it other than the OCD suicidality.  My husband takes Abilify (has ranged up to 15mg, currently on 7.5mg) in concert with Wellbutrin and Cymbalta for his depression and finds it helpful.  

Risperdal - Haven't taken, but took Invega, which is the active metabolite.  Lactated, but hey, I just took meds for that.  Great for moods, pooped on psychosis eventually.

Ziprasidone - took twice, first only for 2 weeks, so who can say.  Second time I was a mess because I was so, SO sedated.  Made Seroquel look like a stimulant.  I don't think my experience is the norm though.

Hi jam, 

I am very afraid of akathisia so that's a good thing to keep in mind with Abilify as I've heard it's similar to Latuda. They told me it was mainly for mania but I know it's been marketed for both. Who can you really trust these days, with so many commercials and the influence of drug reps? They all basically do the same thing to dopamine.

Did you have any blood sugar or weight issues on Risperdal? I don't have psychosis so this could be a good option. Also--did you like Seroquel? That's another one we talked about more than a year ago but I ended up on Latuda instead. Do you feel like Saphris is helping you now?

[electriclynx]

5 hours ago, Wonderful.Cheese said:

I can chime in. My advice though - don't fear the AP's and of course everyone reacts differently to different meds or ymmv! Good luck!

Abilify - I have taken this for nearly 10 years at 30-45 mg. It got me out of a year long state hospital stint. But it's not enough for my psychosis. (I have sza bipolar). So I also currently take 800 mg of seroquel xr. 

Risperdal - tried it twice. Once while in combination with abilify at another state hospital stint and once when full blown manic. Didn't work for me at all. I took like 6 mg. I also tried invega and took 12 mg. I was so freaked out that lactation was a possibility so I stopped if on my own. 

Geodon - tried it several times alone or with seroquel or abilify. Got up to 240 mg. It did not work for me and tended to make me very tired. Although I took it when full blown manic and then was not tired on it (actually it was the first aap I ever tried). 

I'll add seroquel. - this  is along with abilify the backbone of my med cocktail. I have been on and off it for years. It fully prevents full blown mania (although I can get hypo on it). Helps me sleep (although too much) and helps anxiety a bit too. I recently tried stopping it, ended up manic and was placed IP. Sad, because I had been IP free for almost 2 years. I've gained weight which I'm currently trying to work off. 

Thanks, Wonderful.Cheese. I dismissed Seroquel because of all the diabetes risks and my therapist steered me against it, but I understand that it's kind of a crap shoot. There's no way to tell until you give it a shot. Before they knew I was BP, I was on Paxil for a short time and it did zilch for me but I also had no weight gain. My brother is on it however and gained like, 80 lbs. By the way, I've been told that Seroquel is especially good for anxiety, which is a big part of my problem. All the more reason to fear akathisia too. That's got to be the worst experience I've ever had, and I was on Latuda for about a year.

I feel more optimistic about trying some other AAPs. I was hoping I could just stay on the mood stabilizers but I don't think I can keep that up for the rest of my life with only partial relief, unless the Lamictal is really the problem. I've been working on some stuff on my own lately too--codependency stuff. My dad was untreated BP and a physically violent narcissistic type. I pushed those problems away because I didn't want to feel weak (lame I know), but I think dealing with them is only going to help improve my overall life situation. My therapist is a great guy but he hasn't really helped me on that front. 

 

[jarn]

18 hours ago, electriclynx said:

Hi jam, 

I am very afraid of akathisia so that's a good thing to keep in mind with Abilify as I've heard it's similar to Latuda. They told me it was mainly for mania but I know it's been marketed for both. Who can you really trust these days, with so many commercials and the influence of drug reps? They all basically do the same thing to dopamine.

Did you have any blood sugar or weight issues on Risperdal? I don't have psychosis so this could be a good option. Also--did you like Seroquel? That's another one we talked about more than a year ago but I ended up on Latuda instead. Do you feel like Saphris is helping you now?

I've been on Seroquel more times than I can count.  It's effective, mostly (for me anyways) but I gained 50lbs.  Not everyone will gain like that though.  I'm also a former bulimic so predisposed to binging.  On Invega I lost a tonne of weight, Abilify as well was good weight-wise.  

[mcjimjam]

Lithium is an option. It has a lot of evidence showing it is effective in augmenting antidepressants in refractory depression. Plus it is the gold standard mood stabilizer for BP. In my experience it has been very gentle, with regard to side-effects. It is also cheap.

[electriclynx]

Update: I called my NP yesterday and we talked about an AAP or mood stabilizer change. She mentioned taking me off of Lamictal which I thought was scary. I went down on it because of cost and started taking Neurontin, but she didn't think 100mg was probably doing much. I do want to be on a mood stabilizer. Anyway, she decided to put me on Lexapro short-term for the winter. I've tried all kinds of SSRIs and none of them did anything, but she wanted to try this before going for other options. 

I can see Lithium being a potentially good candidate long-term due to how cost effective it is and how well it seems to work.