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FluffyDinosaur
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Default Feb 26, 2021 at 09:54 AM
  #1
Currently the best med I've found to treat my depression is Seroquel. It gets me from severe to moderate depression, at least some days, so it's better than nothing, but I still can't function well at all (although I do keep trying, I'm not sitting around doing nothing). And there's no gradual improvement over time, the depression stays constant, just at a slightly higher level than without the Seroquel. And as soon as I try to taper the Seroquel, the depression worsens so hard and fast, I'm back where I started within two days. Is this what's considered a "successful" treatment? I would like to transition to a maintenance treatment at some point that has fewer side effects, like lamotrigine, but right now that just doesn't cut it without the Seroquel. I don't want to be on Seroquel forever. Surely this can't be as good as it gets? I'm still trying to get ECT treatment, but I just want to consider my options here in case that doesn't work out.
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Default Feb 26, 2021 at 10:22 AM
  #2
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Originally Posted by FluffyDinosaur View Post
Currently the best med I've found to treat my depression is Seroquel. It gets me from severe to moderate depression, at least some days, so it's better than nothing, but I still can't function well at all (although I do keep trying, I'm not sitting around doing nothing). And there's no gradual improvement over time, the depression stays constant, just at a slightly higher level than without the Seroquel. And as soon as I try to taper the Seroquel, the depression worsens so hard and fast, I'm back where I started within two days. Is this what's considered a "successful" treatment? I would like to transition to a maintenance treatment at some point that has fewer side effects, like lamotrigine, but right now that just doesn't cut it without the Seroquel. I don't want to be on Seroquel forever. Surely this can't be as good as it gets? I'm still trying to get ECT treatment, but I just want to consider my options here in case that doesn't work out.

What about both Lamictal and Seroquel?

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Default Feb 26, 2021 at 10:34 AM
  #3
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Originally Posted by BethRags View Post
What about both Lamictal and Seroquel?

Yes, I tried that for a while. I was on lithium and Seroquel for about six months, and for the last three months of that I was on lithium (1000mg), lamotrigine (300mg), and Seroquel at the same time. Seroquel seems to be the main med influencing my depression, so I decided to go off lithium and lamotrigine to go a little easier on the kidneys. I didn't notice any benefit or harm from the lamotrigine, but I still hope it can work as a maintenance med even if it isn't enough to get out of this episode.
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Default Feb 26, 2021 at 10:55 AM
  #4
You definitely do deserve stability. Mildly or moderately depressed is not success, in my book. Neither is perpetual low grade (or worse) mania. I will admit that medications alone are often not the cure all. Many other efforts are required, sometimes, for the best stability. And/or some luck. I'm sure you're working healthy living and therapeutic tools. Maybe try some new ones in addition to ones that have seemed at least a little helpful. Have you considered having your pdoc explore other depression fighting medications? I know that for some an antidepressant can be helpful. If antidepressants are no-nos, there are other antipsychotics that are known as helpful for depression. I'm thinking ones like Latuda. That, with Seroquel XR and some moodstabilizers, seemed to clear a fog for me. It eventually even made me vulnerable to hypomania, so the Latuda was removed with success. Another strategy could be a stimulant, especially if low energy is an issue. Provigil and Nuvigil can be safe for some, though not for me. I think both are available as generics now.

I had been on some medications that were miracle workers for me, but had to be eliminated because of side effects. And I'm pretty tolerant of most. In the end, I found Seroquel XR to offer the best results with the least of evil. I prefer the XR version over the IR. Both available in generics. It's been more helpful and closer to weight neutral for me. The IR always caused me hunger spikes. The more even release of XR doesn't as much, or at least the excess hunger eased over time. I experience similar benefits (XR vs. IR) in terms of fatigue/sleepiness. With the XR, I need only take it at night. When I was on only the IR, I had to take it twice per day. I do believe both Seroquels screw with my metabolic system, but they didn't as much until I was in my 40s.

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Default Feb 26, 2021 at 11:17 AM
  #5
Thanks, I prefer Seroquel XR as well. With IR I can't sleep, at least not after the first few hours. Unfortunately anti-depressants are a no-go for me because I've had a lot of mixed features coming and going in this episode.

Fatigue and low energy are definitely major issues for me, but then so is insomnia. The insomnia is really terrible -- I can't sleep for more than two hours a night if I don't take something sedating. I was on lorazepam for a while but obviously I can't use that forever. I've managed to stop the benzos and that wasn't easy, so I'd rather not start them again. That means something like Seroquel is necessary for sleep until this episode ends.

Bupropion is still an option, but I'm kind of afraid that any stimulant will make my insomnia worse. From what I've read it's also not that well-proven as an anti-depressant, but it could be worth a shot regardless. Like you said I could also try another anti-psychotic. I chose Seroquel because it had a lower risk of weight-gain than olanzapine. So far I haven't had significant weight-gain, but I do get tachycardia from Seroquel.

An added issue is that I appear to be a slow metabolizer of meds. I've noticed that very clearly with Seroquel. It doesn't get my mood stable, but instead it induces a sort of cyclical pattern, where I have to dial the dose back every two-three weeks because otherwise the side-effects build up. When I dial it back, my mood plummets to severe depression, and then it takes about 1 1/2 weeks to get back to moderate depression again. If I continue too long, it starts to induce mixed features, including lots of irritability and not sleeping.

Most of the bipolar meds are apparently metabolized by enzymes from the same family that metabolizes Seroquel, so I'm likely to have similar issues with other meds. That's another reason why I'm still really hoping for ECT. I think I should be good with lamotrigine if I can get on that as a maintenance treatment, because it's metabolized by a different enzyme. I didn't notice any side-effects from lamotrigine when I was on it.

I'm definitely also looking into non-medicinal options. Part of the problem is that most of the time the depression is too severe to be able to really work on things with my therapist. My therapist thinks (and I agree) that I have to break out of the worst of this cycle somehow just to enable me to do that, making it kind of a chicken and egg problem. I'm trying things regardless, but when my mood falls back to severe depression it's like all the progress I thought I made goes out the window.
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Default Feb 26, 2021 at 12:01 PM
  #6
Perhaps the ECT could be a reset for you. It was for me. I'm definitely not the type that would use ECT very long-term. A normal series did seem to help make medications work better a second time around.

I'm sure you didn't mean it as thus, but I thought I'd add for others that the work with a therapist is not what really helps the most. It's the work we do ourselves, perhaps based on the direction or encouragement of a therapist. Just as medications can't always do the work for us.
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Default Feb 26, 2021 at 12:32 PM
  #7
Indeed, that's exactly what I'm hoping for! ECT to get a reset and get me in good enough shape to really work on getting better and prevent a relapse. I agree that ECT for maintenance treatment would be a last resort. I think (or hope) that I can handle the cognitive issues and amnesia if it's transient, but I wouldn't want to have to deal with that repeatedly. Right now the wait for ECT and the uncertainty are really killing me, so I'm trying to get a better picture of all my options so that I can kind of reassure myself that there's a plan B if needed. It's good to hear that it's not just me and that I can hope for more than the treatment results so far.

For me the most important thing about my therapist is that I can feel understood and supported. I don't really get that from anywhere else (partly my fault because I'm not much of a talker). I'm definitely willing to do the work myself, and I'm pretty good at researching and following through on my own treatment options, but that emotional support can go a long way, too, in my experience.
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Default Feb 27, 2021 at 04:04 PM
  #8
I have severe anxiety and insomnia and was very reluctant to try bupropion for those reasons. Well, I finally tried it (after years of resisting) and thus far, I am delighted with it. It has not worsened my anxiety, it does not cause insomnia, and I am finding it to be an excellent anti-depressant. My pdoc started me out on a low dose (sub-clinical) and we've worked up to the clinical dose after about a month. Of course, Wellbutrin doesn't work for everyone, but it sure does seem to be one of the most successful meds, overall.

I do want to mention that Lamotrigine has no especially detrimental effect on the kidneys. It's not like lithium.

I don't know where you are located, FluffyD, but I do know that where I am, and from what I've been told, no one is approved for ECT until all medicinal options have been given a good try.

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Default Feb 28, 2021 at 02:42 AM
  #9
Yeah, we've tried all the recommended medicinal options (the ones listed in the protocol used by the doctors) before my Pdoc recommended me for ECT. I think I'll take a copy of the protocol with me when I next talk to the ECT people so that I can prove that. The two Pdocs that know me well have both given me referrals (the second one after the first referral bounced), so it's not like I'm going to hospitals out of the blue or something, and it's not like I haven't given this a lot of thought. The old attitude that ECT should be a last resort is also supposed to be changing, at least that's what I read everywhere, but I haven't noticed that personally yet. IMHO (and that's also what the protocol says) patient preference should be a big factor as well. It's my head after all. Like I said, I've gone through all the steps in the protocol they use, but there are always more meds or combinations of meds to try, so at some point it'll always come down to patient preference.

That said, it's good to hear that bupropion may be a good option if the ECT doesn't work out. I guess it's supposed to be less likely to worsen mixed features. What dosage are you at? As far as I know there's no established recommended dosage, but I'll probably start low and work my way up if I try it, given that I'm pretty sensitive to meds.
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Default Feb 28, 2021 at 04:55 PM
  #10
Since your psychiatrist recommended ECT I absolutely don't understand why the hierarchy is resisting you so intensely.

As for the "old attitude"...maybe it's changing for some pdocs. I told my doctor, 2 years ago, that if my depression could no longer be relieved by medication I wanted to try ECT. She agreed - with the caveat that she would be sorry to have to put me through ECT because "it changes the personality, and others things, so much." I remember thinking then that perhaps the so-called "new" attitude toward ECT hadn't touched the psychiatric community as much as laypeople are being led to believe.

I'm also quite med-sensitive. My doctor started out the Wellbutrin at 150/day (so, sub-clinical). About three weeks later she increased to 200/day, which is the lowest clinical dose. She said perhaps we'll increase it a bit after a while. I'll be honest, I'm delighted with it thus far. I can't report any negative effects, at all. I was terribly concerned about anxiety or agitation (including irritability). I haven't had any of that - in fact, I actually feel calmer. BUT not sedated. I am sooo weary of sedating medications that leave me half-asleep all day, with my goal for the day to make it to bedtime.

The thing with Wellbutrin is that there are two types (as with many psych drugs) - the regular and the extended release. Apparently, most patients are started out on the regular, then eventually go to extended release. The "target" dose is 300mg. per day. Which, of course, means that some patients will end up on an even higher dose.

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Default Mar 01, 2021 at 01:50 AM
  #11
Thanks, I think I'll probably ask my Pdoc to let me try bupropion while I'm waiting for the ECT intake. Sounds like my best shot would be to start with 150mg IR, hoping that that won't affect sleep too much if I take it in the morning? I'm always really nervous about new meds, and I'm kind of worried because bupropion is "partly" metabolized by the same enzyme that metabolizes Seroquel, of which I know I don't have much. I wonder what happens if "part" of the drug builds up over time... Also kind of worried about the interactions between bupropion and Seroquel because apparently taking the two together can increase the risk of seizures. I don't want to stop taking Seroquel right now, though, because I know how fast my depression will worsen again. Will have to ask my Pdoc about that.

I've never heard about ECT changing personality, only cognitive and memory issues which are supposed to be transient. That's what the information brochures say. I know those issues can be permanent, but in most cases they're supposed not to be. But I have met some Pdocs as well who seem to be really scared of ECT. In my opinion there's kind of a double standard there. They act like ECT is the most dangerous thing ever, but then they hand out meds like it's nothing, even though in many cases those meds have (in my opinion) even scarier side-effects, and they can potentially damage your entire body.

I hope it's not that the whole hierarchy is resisting me; so far it's only been the one hospital that's rejected me, and there was just a major clash of personalities there. The doctors being intensely arrogant and wanting no patient involvement, and me insisting on being kept in the loop. When I eventually got very very angry about them leaving me in the dark all the time, that culminated in them labeling me with "personality issues" and using that as a reason to claim that ECT wouldn't help, even though their own examination (which was performed by their clinical psychologist, with who I got along fine) determined that I have no "personality issues" at all. But they even went so far as to claim that the fact that I did get along with their psychologist was further evidence of "personality issues," because apparently the fact that I got along with her but not with them meant that I was "splitting." My regular Pdocs say that they've never found any evidence of me having personality problems, and they say I was right to be angry, but never mind that because apparently when you're a Pdoc and you don't like a patient, you can just make **** up. Anyway, that was about four months down the drain right there.

I'm now at the second hospital, and they have no problems keeping me in the loop, but I'm still just waiting and haven't spoken to the ECT people in person yet. So I don't actually know that they'll resist me, it's just that I'm terribly scared it will be a repeat of that first awful hospital. I can't stop worrying about that, and at times it feels like a certainty in my mind that they're not going to help me, either, and I'll be left depressed with no hope of ever getting better. I hope it's just the depression talking...
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Default Mar 01, 2021 at 12:22 PM
  #12
I take Wellbutrin in the morning and again at 4 p.m. I also take Seroquel for sleep - no seizures yet.

I have to say, FluffyD, that I find it interesting that you fear medication, but not ECT. I think that most people are opposite (I'm not saying that "most people" are correct - just that it's interesting to note).

I'm not sure what my pdoc meant by ECT "changing personality", etc. She said it so firmly...spooked me a bit, since she's in her 60's and works p/t with IP, p/t outpatient. So plenty of experience.


It sounds to me like you are in a loop of depression, but that's just a guess based upon the thoughts you share. Hopefully, the hospital you're currently involved with will be much more responsive to your needs.

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Default Mar 02, 2021 at 01:22 AM
  #13
Yeah, there's no doubt about the depression, but I still wonder which of my thoughts are caused by that and which aren't.

And don't get me wrong, I am scared of ECT as well as meds. It's just that at least with ECT, the side-effects are pretty clearly defined and relatively predictable, and you know it affects only your brain. Plus, at least I know when the treatment is done and when I can transition to maintenance treatment, unlike with meds where there's no well-defined end and I may never succeed in getting out of the acute phase.

With meds there's about a hundred side effects that you might get, some of them serious. And they affect your whole body. I might get kidney damage, I might get diabetes, I might get high blood pressure, I might never be able to sleep without meds again, I might gain weight, I might get tachycardia, I might get permanent tardive dyskenesia, I might get seizures, I might get a deadly skin rash, and so on.

But many of those most damaging side-effects are long term, so Pdocs (and maybe some patients) don't worry about those side-effects as much as the effects from something like ECT, which are immediately visible. To me, that's just like sticking your head in the sand. In the end, the meds are no less damaging than ECT, and at least with ECT I know it's more likely to be effective than not, unlike meds which in many cases have well under 50% effectiveness. At least that's how I see it.
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Default Mar 02, 2021 at 01:12 PM
  #14
Yes, meds are scary, for sure. although there are a very few that do have almost no, or no, side effects - Wellbutrin, for example.

Having a mental illness is an illness like any other. It's emotional and mental, sure, but it's physical, too, and comes along with all the risks and issues - and possibly shortened life span. That's why I give those of us who have mental illness so much credit. Not only do we have a disorder, but we have to deal with stigma. And yet, most of us keep going, hoping, and trying.

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Default Mar 02, 2021 at 03:03 PM
  #15
Yeah, that's true for sure. I wish more people would see that. At least with a physical illness people can see that you're struggling. With depression, I feel like I'm fighting that battle all alone. Most people don't see it as a "real" illness, they just think you're a little sad and that it's something you can just get over if you try. On top of that, I always do my best to keep up with all my responsibilities, keep working, taking care of my family, and so on. But the harder I try that, the more people think I'm not really sick, and the more they blame me for the things I can't do despite my efforts. The fact that I was still trying to work (even though I was completely failing at it) has even been held against me by the ECT Pdocs. It's like I get punished for doing my best. Nobody sees the amount of fighting that goes on inside, so there's no way to win.
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Default Mar 02, 2021 at 03:16 PM
  #16
I know. I hear you. It's like when I applied for disability. The more one has worked, the more money disability pays. How does that make sense? Obviously, had I been able to work full-time I wouldn't need disability. So I ended up receiving only a few hundred dollars each month, rather than enough to at least partially live on.

And sometimes (not always, but sometimes) mental health care providers are the least considerate of all. My heart goes out to you FluffyD, it really does.

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Default Mar 03, 2021 at 02:33 AM
  #17
Thank you. And I agree, that makes no sense at all. Disability should at least provide enough to support a normal standard of living, regardless of how much you've worked in the past. Otherwise, what's the point?

The Pdocs in that first hospital were definitely some of the least considerate people I've ever met. I would even go so far as to call them cold-hearted. I never noticed even a minimum of empathy from them, and they appear to think of their patients more as objects than people. It's as though they think that you have to dehumanize patients to be "professional" and "objective" or something. It really blindsided me because until I met them I thought that all Pdocs had at least a minimal level of caring. I was naive, but I guess that goes to show that I've been lucky with the other Pdocs I've seen.
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Default Mar 03, 2021 at 10:46 AM
  #18
I've seen at least 40 pdocs in my life and I've found they split into two camps: those who are caring and empathetic and those who are cold as ice. Honestly, I haven't experienced any that are "in the middle." And most do care about their patients, but there are those few who are seriously sickos...sadistic, power-hungry people who have no business being doctors.

I hope and pray, FluffyD, that you get the help you need from your current caregivers.

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Default Mar 03, 2021 at 11:17 AM
  #19
Thank you, I really appreciate your support!
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Default Mar 10, 2021 at 03:42 PM
  #20
@BethRags: Just curious, how long did it take for the bupropion to kick in for you? I'm trying it right now, and I haven't been on it for long but so far the main effect is that it's making me really really dizzy.
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