treatment resistant - what else can be tried?

I thought Asenapine was doing it, but not at the cost of 3 kilos gain per week.

So,

- two overdoses in history, the first one nearly lethal

- racing thoughts a big issue and I only learned to recognize them this past summer. Mixed states with racing thought speed and depressed thought content.

- self-harm during a break from reality when not on antipsychotics, classified as the second suicide attempt because it could have led to death, but in my mind I was killing my voice in self-punishment by forcing myself in chew on and ingest OxyClean (=laundry detergent booster)

In general, organically I tend to highs and my depressions are all situational. Can be very deep, but always situational. Highs can be without reason. So this is strongly Bipolar I, with Psychotic features.

Sleep is a huge issue.

My late mother had Bipolar, without suicide attempts. I am a victim of CSA, she was not. She had more depressions, longer depressions. Essentially was addicted to Amitriptyline and tranquilizers. Suffered huge weight gain from Amitriptyline. Combined alcohol with tranquilizers (alcohol has not effect on me and neither do tranquilizers). Had tardive facial dyskinesia in the form of a tic that got worse when she was anxious. Reportedly a side effect of thorazine. Took other first generation antipsychotics.

In more than 10 years since diagnosis, I tried:

- Depakote - severe weight gain, paradoxical tendency towards hypomania unless combined with Lithium, low platelet count and severe hand tremor

- Lamictal - causing highs, insomnia.

- Seroquel - regrettably, almost caused QT-prolongation, otherwise was a good drug when combined with either Gabapentin or Atarax to ameliorate akathisia/knee jerks

- Risperdal - caused extremely deep and at times psychotic depression, pre-Diabetes and anorgasmia/vaginal dryness, Parkinsonism that was managed with Cogentin. The worst depression happened on Risperdal and essentially wiped out cognitive abilities and insight into self in that I was not able to identify that I was depressed and that depression was iatrogenic essentially. Went on for many months. Happened two times in my life. Second time I ended up in a psychotic suicidal mixed state that Geodon relieved in a matter of couple days. See below on Geodon for maintenance.

- Geodon - was side-effects-free at lower-to-medium doses but at a high dose (in combo with other drugs) caused a very scary episode of acute facial dyskinesia - my tongue moved rhythmically in my mouth and then wrapped around the upper lip. Also, did not cause enough sedation upon getting used to it and did not work effectively enough. I had breakthrough symptoms

- Lithium - abnormal creatinine (kidney function test), acne that persists upon discontinuation but is manageable with retin-A and benzoyl peroxide, hypothyroidism that persists upon discontinuation and I have to take Levoxyl for life now, weight gain (not major), erosion of foot enamel; was not effective and I had a lot of breakthrough symptoms.

- Tegretol - a tiny dose gave me supreme serene mood, but I had skin rash that did not respond to any antihistamines. Also had congestion, but it went away. The skin rash was not dangerous in that it was dry, but it was not tolerable. Even combos of antihistamines were not effective.

- Abilify - was not effective at all for hypomania. Caused word finding difficulty that persists upon my discontinuing (after about of month of taking it, I discontinued in late November but still have word recall problems). Also had one episode of loss of control over speech / facial muscles that was scary.

- Asenapine - severe weight gain

- Olanzapine - severe weight gain

- Tranquilizers do not work at all (I am kind of glad since I cannot become addicted)

- Gabapentin helps with sleep, but not with mood. I love it because when I take it, I have dreams as in normal, unmedicated sleep.

- Trazodone helped with sleep, then stopped working. I restarted once and it did not work. Now I am restarting again and it seems to work, although in combo with other drugs currently it is hard to tell.

- Atarax. Helped with sleep, then stopped working. After awhile started working again and is an option.

- Amitriptyline - severest weight gain. Plus, since the main issue is highs and I become unmanageably creative on it, it is not my drug for sure.

- Prozac smallest dose. Helped with situational depression and suicidality, but overdid it.

I have not tried Latuda or Vraylar. Concerned that they would cause hypomania and insomnia.

I have not tried Trileptal. Concerned about the suicidal risk warnings.

I have not tried Clozaril. Concerned about severe weight gain and the white blood cell count.

I can try the above (Latuda, Vraylar, Trileptal, Clozaril).

Have I missed anything? I cannot tolerate Topamax which I tried for migraines - I had severe dizziness, complete anorgasmia, aversion to food and drink with the resultant spike in migraines since my main trigger is dehydration, and general malaise, all at the smallest dose.

My daughter has epilepsy and migraines. I do not have epilepsy. I have heard of people using Keppra for bipolar off-label, even though it is only approved for epilepsy.

I manage migraines effectively now with BOTOX, promethazine, indocin and imitrex.

I just got approved for SSDI. Approval came in less than two months. I know this is highly unusual.

I feel demoralized. Asenapine worked just fine and I felt great, but I went up from 100 to 108 kilos and I was already obese. I am 165 cm (5'5'').

Would appreciate any pointers.

hi. the old school tranquilizers/antipsychotics can be helpful, its just that EPS and TD are more of an issue. Perphenazine, loxapine, navane, and amoxapine (which is technically an antidepressant) come to mind, although I don't think amoxapine would be OK w/ an OD history. dosing is the -big- issue; the lowest effective dose is the ideal target, especially with the older drugs.

keppra does work for some people. it can also -cause- psychiatric problems, which is true (i think...) of all the anti-seizure drugs.

do you have any alternative health practitioners around? some of it is snake oil, some of it helps, some of it can help boost standard treatment. just a thought.

talk therapy helps some people. group therapy. art, writing, exercise, diet modification, light boxes.

volunteering. spiritual stuff, if you're into that.

sorry about this. i took trileptal until recently. it was OK. I kind of suspect it lowered my mood, but that may have been the dosage. minimal blood work, which is a good thing.

hope you can get the help you need.

Thanks, still_crazy. I do talk therapy, art, writing and it all helps. I am not the kind of person with seasonal affective disorder tendencies, plus I live in Northern Cal and having grown up in Russia, I do not seize to feel thankful (that is, when I am already a little elevated) for the blessed climate. Unless I do not know something about light boxes and they help with circadian rhythms and not just SAD. I will do searches, both on this site and on google. I have sent in my request to put me to (wo)man soup kitchen at the school where my now adult son learned to read, several hours a month. I do not think I can handle more now, since I have a lot of writing projects on which I am late and when I do not write enough, the combo of creativity and lack of progress causes issues on the high end of the spectrum (no, not pleasant highs). I eat very well, except that on Asenapine I ate sweet stuff (it is normally out of character) and on Zyprexa I ate everything in site. Depakote causes me to become culinary adventurous, cook festive dishes inventing unusual combinations of ingredients, and take heightened pleasure in tastes and colors of foods. Anyway, Depakote is clearly not indicated now, so I went off on a tangent. I eat lots of fiber, veggies, and protein. Cook 90% of my meals. Eat buckwheat and millet regularly. Do not eat much processed stuff. Eat lots of leafy greens, cook soups, make my own bone broth, invent heavenly fruit salads. Make smoothies with plain kefir, vanilla yogurt, frozen fruit or berries, cooked dried fruit and ground hemp seeds. Make my own dried fruit infusion. I really do not know what I can do better with food except that I plan to buy flax seed oil and add it to smoothies.

Maybe trileptal is the first thing to try for me.

Yes on anti-seizure drugs causing psychiatric symptoms - I tried Zonegran for migraine prevention and weight loss and it caused such mania that I ended up fired.

I had a Dr at one point suggest ECT. I didn't try it, because I had one med left, tegretol, and I'm still on that med. I'm not bold enough to suggest it to anyone. There were people in the hospital that were having it done with relief as long as six months without drugs. There was very temporary memory loss that came back within two days. It's usually outpatient under sedation as long as you have someone to watch over you for a couple days. These people were there because they hadn't been treated in a long time and gone suicidal or dangerously manic. I'm still intrigued by it, but I'm not sure.

SorryShaped, this is a very, very helpful suggestion. I have been inpatient at Stanford psych many times and the people who were undergoing ECT did so for depression. It did not occur to consider it for the opposite tendency. I will be sure to discuss it with the psychiatrist tomorrow.

ect can be rough. i hated mine (involuntary...apparently "emergency situation"), but i have a friend...her dad gets ect on a fairly regular basis. seems to help, and he's still brilliant, so...i guess he's a success story.

I'm sorry you've had such a rough time with bipolar medications, AspiringAuthor. The side effects you mentioned all seem to be particularly bad ones.

I'm on Tegretol XR (a large dose), but have never had a rash. Was Tegretol a medication you just recently got off of? Or from a while back? I would wonder if trying it a second time (or trying the extended release) might not cause the rash. You said it gave you a serene feeling. That sounds nice, as long as you don't have a rash.Trileptal is actually a very close relative of Tegretol in that it has oxygen added to it. Trileptal doesn't usually require blood monitoring, and doesn't have all of the drug interactions that Tegretol has (though it has some). The only bad thing is that it seems to be a little less effective for some people than Tegretol.

I've never tried Latuda or Vraylar either. I have had ECT, but only for a long stubborn severe depressive episode, not any of my manic episodes. ECT can be a lifesaver for some. I've heard of some people not having memory problems, but I did.

Of the 1st generation antipsychotics, I've only taken Navane (Thiothixene) and Trilafon (Perphanazine). In my case Navane seemed helpful, but at a higher dose gave me a dystonia. My pdoc lowered the dose and the dystonia went away, but the lower dose plus many other bipolar meds, didn't do enough. Trilafon (perphanazine) was very effective for me. Possibly the most effective antipsychotic I've been on for mania and mixed episodes, but it did give me weight gain. I was on a slightly higher than normal bipolar dose of Trilafon.

ECT is used for both mania and depression here with success. At one point when I was contemplating stopping meds my pdoc said she would consider letting me, on the condition that I had ECT every 6 months.

When I was put on Depakote (Epilim) the first time I packed on the weight and came off it. Late last year when I was in hospital I was put back on it again except on a lower dose. I have not put on weight this time and I have now been stable for 6 weeks (a new record for me).
If you’ve stopped taking a med due to weight gain it’s worth trying it again at a lower dose.

Thank you!

Tegretol gave me rash exactly a year ago, within a few days of taking it. I was on 100 mg, extended release - I just phoned the pharmacy to confirm my recollections and they did.

The side effects have often been brutal. I forgot to mention severe akathisia that was torture-like, in 2009, when I used high doses of Seroquel without Atarax or Gabapentin - atenolol did not work well to ameliorate the akathisia. In 2017 I tried again, this time with Gabapentin or Atarax, and both worked, and it seemed like a miracle, but then I was hit with QT-prolongation. It was my first borderline EKG ever. MY QT would have been too long for a male and was borderline for a female, but it was clear that if I were to continue, it would become too high for a female, too. So we tapered if off but asenapine caused rapid weight gain. At this point ECT seems so attractive and I am glad in Australia it is used for both ends of the range of moods. My long term memory is extremely good - I am a synesthete and such people have unusual memorial abilities - but after Abilify I have trouble recalling words. In the past I had such trouble on both Zonegran and Topamax, but it went away as soon as I stopped the drugs.

My hesitation with first generation is the higher risk of extrapyramidal side effects to which I am already predisposed, both by my own history and by how my mother had EPS and tardive tic. It can be genetic. My family of origin hid her EPS and tic from me (my father confirmed it to me in spring of last year when I asked, and by then I had figured things out by myself and he just uttered "thorazine" (aminazine in Russian) so I now know which drug caused it but I figured everything out after my episode of acute facial dyskinesia) - so they hid it from me and people who cared for me when they were asked, in 2009, and I was put on Risperdal, which is very similar to Haloperidol and other first generation AP's in how it causes EPS and Parkinsonism, much more so than 2nd generation AP's - I had, without myself being able to identify them, Parkinsonian mask, stiff Parkinsonian gait, and later was able to identify small motor difficulties in that I was not able to type on the laptop's keyboard) - so what went in with Risperdal is there in my system and I cannot undo it. The risk of tardive dyskinesia, dystonia and dysphonia goes up after menopause since estrogen is protective. The risk is especially high in women over 60. I am 47. I have some time to figure it out, but given my generally good memory I would rather suffer some memory loss but not up the risk of tardive dys-effects later in life.

So it sounds to me that I should do a Trileptal trial, hoping for the good part of Tegretol without the rash, and if that fails, go for ECT. The good thing is that I live close to Stanford hospital, have been there many times, know all the nursing staff, drs and occupational therapists, feel comfortable there. The food is quite decent and they allow cell phons and laptops (unlike some other hospitals I have been to). And they have lots and lots of experience administering ECT.

How does it work in the US when you have planned rather than ER-route ECT? I have only had emergency medical admissions at Stanford.

PS I had weight gain on a lower dose of Asenapine, but at a less rapid rate. Scaling back is an option I will discuss with the dr tomorrow.

Just wanted to add a positive perspective on ECT - I don't recommend it to people who have not tried many medications, but you definitely have. I have had ECT done as a last resort treatment for depression only, but I would not be surprised if it helps with mixed symptoms as well.

There are a couple of negative side effects that I noticed:

1. Temporary memory loss and the permanent loss of a few things (nothing major).
2. Temporary inability to remember what I read (I would need to read the same line a few times)

But aside from that, it pulled me out of a depressive episode where I was in bed all day, hardly eating, and not taking care of myself. I would do it again in a heartbeat if I ever went so low again, but as a last resort only due to the side effects. If you have tried most of the meds, I say definitely discuss it with your doctor and consider it as an option. If you do get ECT, be sure to write down important passwords and stuff in case you forget temporarily. Good luck!

Thanks so much! Coincidentally, since after Abilify I do have trouble with word recall, I am now going through my passwords, changing it to Chrome-suggested ones that Chrome memorizes for me. Obviously this would be helpful as you suggest.

I can't give any real advice but I was treatment resistant as well. Tried practically anything that's ever used for bipolar mania to no avail and was rapid cycling and spent lots of time locked up. I lost all hope and thought I'd spend the rest of my life out of control and going in and out of hospitals. Until I went to an IOP where the pdoc there gave me clozapine. It works very well and is extremely effective. However, if you're prone to weight gain from antipsychotics I'd stay away from it as I find it is the worst of all the antipsychotics in that aspect. ECT has also been recommended for me and I have decided I'll give it a shot should I relapse.
I hope whatever you decide goes well for you.

What is more important? Weight gain or stability? You can always manage the weight gain to an extent until you find something better. Maybe this does not apply to you, but I need to be stable when holding down a job.

FWIW

Forgot to say that TMS may be an option for you to investigate.

I am not working and I do get what you are saying about holding down a job - I did in the past - but "you can manage the weight gain to an extent until you find something better" means that you have not read my long post, unlike all the other responders. I have tried everything but Clozapine and as has already been pointed out, it is the worst. A pdoc in the past told me it is as bad as Zyprexa. Some other data suggests it is worse. I already weigh 238 lbs, which is back to my worst weight. In spring I was down to 205 and all has been regained, most rapidly the most recent 18 lbs in several weeks on Asenapine. I am beating myself over waiting for that long - it should have been crystal clear from the get go, but I was focused on trying to sleep. I already cannot wear new clothes I bought (mind you, off ebay, cheaply, but I am sure nicer clothes won't fit either now) in late November. I cannot buy new clothes each month.

The "can be managed to an extent" runs in the face of pretty much all the evidence out there and on these boards. Virtually every long term study shows that lost weight is regained and often with more than was lost, and that weight fluctuations are worse than having stable weight, even if obese.

Again, I get the "hold down the job" but not the weight vs stability dichotomy - if I need to buy clothes again, how is that stable?

Plus, probably specifically because it is from meds side effect (effed metabolism), I do not gain weight in a womanly way - I have absolutely nothing against ample hips, thighs or butt, or all of the above, but I gain weight around my waist. When I was buying new clothes in late November, I at least had a waist. Now I do not. The unhappiness that is going to result from it will erase any advances in stability.

Besides the fact that weight gained around the tummy rather than in a womanly way does not look good, it is dangerous visceral fat that increases breast cancer risk and my mother died from breast cancer metastasis (had major weight gain from Amitriptyline and then when she found a lump, a virtually at my current age, she did not report it promptly). She gained weight in the same fashion. For her it was even more pronounced because before meds she had Sophia Lauren's waist-to-hip ratio and I had a different body type - more like a perfect hourglass with breasts equalling (fairly narrow) hips. So on me it looks hideous because I do not have hips to outweigh - literally - the large belly. All of it is visceral fat (I also have lived under extreme stress for more than a decade so I secrete cortisol, and then it is Catch 22 because visceral fat produces cortisol - it is like a hormonal time bomb in the body). Had you read my post, you would have seen that I had already been prediabetic on Risperdal, which remitted after discontinuation, but what I did not read (and I am sorry - the post was long, so I am not faulting you for not reading it, but at the same time I used short paragraphs, bolded the names of meds, and in general tried to be reader-friendly) - so what I did not write is that I have diabetes on both sides of my family, and while my grandparents were obese when they were diagnosed, my father is normal weight, and still. So it is not "weight vs stability" for me, but "extreme health risks vs temporary stability".

I thank you for the post that made me think, made me recall the heightened risk of diabetes, and made me realize just how deadly more weight gain would be for me.

So I am leaning more and more towards ECT. I have extremely good memory, long term I mean, outside of the word recall issues, but I remember events very well, and if I lose some of that but not gain more weight, I would go for it any time.

Thank you - you made me think out loud.

My total weight gain has been probably 100 lbs. I did not weigh myself back when I had a perfect figure, which I did after having three kids, the last one a 9 pounder. And I did not have to work at all to return to the pre-pregnancy weight. This was all years before meds. I did not know what was coming my way.

My roommate is very happy with it for MDD. I am concerned since I have read that it can cause mania. The pdoc agreed, but now that we have run out of options pretty much in terms of meds, I will ask him to reconsider. My roommate has already recommended his TMS provider so it would just be a matter of making an appt if the pdoc and I decide we can take the risk.

Did anyone already mention Trintellix? Sorry if they did.

I was inpatient for several weeks in February. Was put on Clozapine. It is making me depressed. Will discuss with the pdoc tomorrow - the thing is, the dose I take, 100 mg, is low, so there is not much room for titrating down.

ECT won't be paid for by the insurance until the meds options have all been tried.

What about MAOI's