View Single Post
 
Old Jan 01, 2020, 08:29 PM
bpcyclist's Avatar
bpcyclist bpcyclist is offline
Legendary
 
Member Since: Sep 2019
Location: Portland
Posts: 12,681
Quote:
Originally Posted by BirdDancer View Post
Hi bpcyclist. I will only share my experiences, which are likely not the same as many people's. As for antipsychotic recommendations, that's ditto.

The turning point for the control of my bipolar mania and mania with mixed features (and any resulting psychosis) was stopping antidepressants once and for all. I can't say with 100% certainty that I wouldn't have one suggested in the future if I had severe stubborn depression, but I am certainly hesitant to accept one. I have not had a severe long-term depression for about 9 years. Prior to that, other than severe mixed states, mostly on the manic end (many with psychosis), I hadn't had a significant pure depression since maybe 1996, when I lived in Taiwan. There, I was taken to the hospital and they surely put me on an antidepressant, or who knows what. Within a couple weeks I quit my job, losing hundreds of dollars, and started traveling around Asia by myself manic, having sexual flings with a couple men. I was 25 years old, at that time. I'm a woman.

I have had short periods of low grade depression with hypersomnia within the last 9 years. Maybe 6 and 7 years ago, especially? I was trialed on Provigil three times. The first time I couldn't' afford it beyond the trial package. The second time, I started to become manic within a week or so, and was taken off. The third time, I started to abuse the Provigil and became so manic on a vacation to Maine that my husband threatened to take me to a hospital there. That mania lingered and all kinds of crap happened.

Putting the above experiences aside, I have been activated even by other medications. Lamictal is very activating for me, but I have taken 100 mg for about 9 years now as a sort of antidepressant, but with plenty of antimanics with it. Above 100 mg and I can often become manic. Abilify was either activating or useless for me at preventing mania. What made it worse was that at one time I took 300 mg Lamictal with some dose of Abilify. That was pretty bad and sparked a series of severe manias (and mixed states) with psychosis with about 5 hospitalizations almost in a row.

When it comes to effective antimanics for me, Depakote, Seroquel, Seroquel XR, Risperdal, Invega, Zyprexa, Geodon (but not fully), Trilafon (aka perphanazine), and Navane (but not fully aka thiothixene), were all helpful. Depakote pushed me from severely manic to pure depressed, so I called it "Depressakote". I took Invega then, too. I ended up needing ECT and was the heaviest in my life at that time, and far worse blood work results than I have now. Unfortunately, none of the antpsychotics were perfect for me in terms of side effects. It's been more a matter of "the lesser of the evils", my ability to tolerate them (and I think I'm more tolerant than most people), and other factors. The truth is, I've had a choice to make. What is worse? My bipolar disorder or the side effects of the "lesser of the evils" medications? In my case, the "lesser of the evils" medications are indeed less evil than my bipolar disorder.

I also take Tegretol XR (carbamazepine ER) and Latuda in addition to Seroquel XR, and the small dose of Lamictal. I think the small dose of Latuda is more of an antidepressant-like antispsychotic than anti-manic for me, but it isn't really activating. Tegretol XR? I don't know, but I take it because it rid me of a year-long period of musical hallucinations and symptoms that resembled Simple Partial (focal) seizures. Kisses to Tegretol XR! Plus, its side effects are very minor for me (some clumsiness).

I do think that my Seroquel XR contributes to my elevated cholesterol. Sometimes, if I don't eat right for a while, I also have elevated triglycerides. I've been on doses of 450 to 600 mg of Seroquel XR for about 7 years now. I am overweight, but I almost never exercise and my diet is not perfect. I know some gain extreme amounts of weight, but I have stayed within 10 to 20 lbs of a normal BMI on these doses for these years.

For anyone interested, when I was taken off Depakote ER and Invega after my ECT, I was put on Lithium (900 mg), Lamictal (100 mg), Tegretol XR (1,400 mg), Geodon (160 mg), and soon after Navane (up to 10 mg). All together. During the 6-month period on that new behemoth mix, I was able to lose 40 lbs. As I said, I've maintained all but 10 to 20. I needed the big mix to tame my mania again, but was able to go off some of the medications (severe side effects). My current mix (see signature below) is pretty easy to live with. Yea, I have high cholesterol and break about 6 things per month from clumsiness, but that's about it. I am trimmer than my siblings and parents were at my age (or now), and of them, only my sister takes an antipsychotic (Abilify, which was weight neutral for me). Folks in my family are not Skinny Minnies. If you google "average weight of women in the US", my weight will show up. So...even Seroquel XR isn't a total evil weight gainer from hell for everyone. Plus, if I bicycled 5 miles, four times per week, and ate a bit better, my cholesterol might not be that bad. Maybe other peoples' still would be. So far my docs still say I'm low enough risk not to take a statin. My blood pressure is usually close to normal.

I do hope to go on a diet and exercise in 2020. My husband really needs to, as well. My resistance is likely no more than the average woman my age (late 40s).

I do sleep well on 600 mg of Seroquel XR. I get about 8 or 9 hours.
BirdDancer, I want to thank you sincerely from the bottom of my heart for taking all that time to share so much of your med story with me. That can't have been an entirely pleasant post to write and I really, really appreciate you for that time and effort to try and help me out. And you certainly did.

Yeah, you are killing me with the Depressakote. Can't ever do that or Tegretol again. Nearly killed me with zombieism and mega-SI. Lamictal, had the SJS/burn unit visit. Good times being a dermatologist in my own burn unit. Been on almost all the atypicals, and I do think the current Abilifry, little bit of Serokill, and some emergency/911/freakout Zyprexa on-hand are helping, but I am clearly having breakthrough mania + psychosis. Fascinating hearing you describe your kind of overall illness trajectory. Mine has been quite different, except for one key nearly identical fact: my mania will kill me if it is not quashed, like, instantaneously Won't bore you with what I've done/almost done, as you have already been there and done that. Bad. Really, really dangerous. I am just a madman when seriously manic.

Now, my overall trajectory has been, over the decades since childhood onset of my bp 1, shifting from depression-dominated to mania PLUS concomitant psychosis-dominated now. Weird how the same disease can change over time. So odd. Anyhow, this is why you see my post as it is. The mania will kill me. The psychosis is unlikely to, as I usually just hunker down in bed and pray and breathe and don't do anything else for days or until it lets up. So, it's misery, but it is not nearly as dangerous to my life expectancy as the mania.

Which brings us to depression. If we were to permanently or even temporarily d/c my Provigil and/or Wellbutrin again, I can pretty much guarantee a massive depression to follow quickly. That has been my pattern. I have been on so many antidepressants that I could not identify them all without all my charts to go through and help me recall. I laugh at MAO Inhibitors. They are like water. So, this is dangerous territory for me. I have multiple, extremely serious S attempts in my past. Details unimportant, except to say that the fact that I am alive and writing this is truly, truly a miracle. A gift. I don't want to lose that.

The only time I have almost for sure gotten manic while on antidepressants was in July of 2005. I was on Cymbalta, Short-acting Wellbutrin, and 60 a day of XR Adderall, so, a lot of activating stuff. I went straight to hospital for a month. Zyprexa, was doing pretty well on discharge. But my shrink at the time was so freaked by my mania, that she, of course, refused to treat my depression with antidepressants again, which led to S attempt #'s 1 and 2. See the pattern here?

So, it's push-me, pull-me with me. We don't manage my depression, it's life-threatening. We don't manage my mania, it's really, really life-threatening. We put me in a coma, it's life-threatening. On and on and on.

This is way too long and needs to end. Sorry. Just wanted you to sorta see what my particulars have me facing today. At the moment, priority number 1 is sleep and mania control, equally. Number 2 is not to induce depression/more SI by whatever moves we make. Number 3 is mitigating psychosis. But really, for any kind of quality of life, we have to do all three. Seeing the brilliant Dr. C on Friday. I know he has been thinking about this. We'll see. Not giving up yet. Thank you again so very much for your insights and your openness.
__________________
When I was a kid, my parents moved a lot, but I always found them--Rodney Dangerfield
Hugs from:
CutegirlS