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  #1  
Old Sep 23, 2018, 01:41 AM
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annielovesbacon annielovesbacon is offline
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My doctor has just started me on Seroquel and I know that a very common side effect is weight gain. I am in a very rocky recovery from an eating disorder and this is terrifying to me, which I vocalized to my doctor. He said I can discontinue the medicine after a week if I don't like it.

In the meantime though, I am still very anxious. It would make me feel better to hear others' experiences with the medicine, even if they are negative. I just like to have lots of information, it calms me. Is anyone willing to share what it was like for you?
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  #2  
Old Sep 23, 2018, 01:55 AM
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downandlonely downandlonely is offline
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I haven't taken it, but I have heard it makes you very sleepy. Some people take it just for sleep.
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  #3  
Old Sep 23, 2018, 02:17 AM
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I don’t know what dose you’re on. However, I found that I’ve only put on weight when I’ve been extremely unwell and my dose has been ramped up. Once I’ve recovered from an episode my Seroquel dose is lowered back down and my weight drops back down.
I’ve been on Seroquel for 4 years. I take both the extended release and the immediate release. If it weren’t for Seroquel I’d be even more unwell than I am.
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  #4  
Old Sep 23, 2018, 05:17 AM
Anonymous35014
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I've had a lot of negative experiences with Seroquel, but weight gain wasn't one of them.
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  #5  
Old Sep 23, 2018, 06:08 AM
Marilyn2016 Marilyn2016 is offline
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Complete zombie. I was on 600-800mg's, and I was like that for months. SOOO GLAD to be off that drug. Although, it effects us all differently, so good luck!
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  #6  
Old Sep 23, 2018, 07:20 AM
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Treyfrancis21 Treyfrancis21 is offline
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I slept 16+ hours a day and gained weight. Good times...
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  #7  
Old Sep 23, 2018, 08:01 AM
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My experience is like Pookyl's. Weight gain has only been an issue depending on my dose. I've found Seroquel XR to be more weight friendly than regular Seroquel. If I take 450 mg or less, I am fine. Above that and I have to work very hard to maintain and even harder to lose weight.

Sedation can be an issue on both Seroquels. Many people take regular twice per day, people on XR usually only at night. Your body usually adjusts to the med over time so the sedation effect lessens. With Seroquel XR, I do well if I take mine at 7 pm and go to sleep no later than 11 or 11:30 pm at the latest. Otherwise, I sometimes have a Seroquel "hangover".

The goal is to take as much as you need and no more, in my view. Sometimes when I've been stable a while my psychiatrist lowers my dose. That can be good in terms of both the weight gain and sedation side effects. Other times my dose must go up, if I develop a mood episode. My personal favorite dose is 450 mg of Seroquel XR, but it does indeed need to be increased from time to time.
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  #8  
Old Sep 23, 2018, 10:05 AM
Gabyunbound Gabyunbound is offline
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It increased my appetite, especially for sugary foods. This side effect slowly decreased.

But it's very VERY sedating, and when I was taking therapeutic doses (in the 100's), I was useless; I used to fall asleep at work (this was years ago, now). I hated it for that reason, but it also got me out of a manic episode and helped with my anxiety (I mean, if you're a zombie and falling asleep all the time, of course you can't be very anxious).

Personally, I think it should be used -TEMPORARILY- to get people out of manic episodes, but I don't think it should be used long-term. I finally got off of it, and it was replaced by Abilify. Abilify has its side effects (including the shakes, which I propranolol for), dizziness and some food cravings of its own, but I'd take it over Seroquel any day. And it's been very effective.

Also, I've taken it for sleep, at 25mg. When I was doing that, I needed some 9-10 hours of sleep to be useful the next day and would go to bed super early, which would cut short my day a great deal. I would still be hungover the next day, but not as badly as if I had gotten less sleep.

Then I started taking other meds for sleep after I told my pdoc NO MORE SEROQUEL. I tried a couple that didn't help at all, and then Klonopin did. As I was slipping into a manic episode, it stopped working for sleep, and I starting taking Zzzquil (Nyquil now puts out a med just for sleep) and have stayed on that even though my pdoc doesn't like it.

(A higher dose of Abilify got me out of the looming manic episode, which had started with hearing and seeing things and having trouble sleeping).

Point is, since my pdoc didn't want me on Zzzquil (I think because it's OTC and she doesn't know anything about it, not because it's known to be dangerous or anything) she put me back on 25mg of Seroquel (that's the dose for sleep). Well I took it and had the hangover of the century the next day and decided NO MORE. Went back on the Zzzquil which helps me sleep and doesn't give me a hangover.

All and all, I hate Seroquel. I would only take it, temporarily, if I needed to get myself out of a manic episode Iw as already deeply in. I've seen that taking more Abilify helps get me out of the beginnings of a manic episode.

Good luck!
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  #9  
Old Sep 23, 2018, 12:03 PM
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I took a minimum of 100 to a Max of 800 mg nightly at peak. Made me sleep, usually and I felt like a hangover without it when I accidentally skipped.
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  #10  
Old Sep 23, 2018, 12:23 PM
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Just something to keep in mind:

Seroquel is one of several psych meds which has the potential of causing heart QT interval prolongation. If/when combining Seroquel with another med which also has this potential, an EKG should be a part of the consideration.
Be safe!


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  #11  
Old Sep 23, 2018, 01:06 PM
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I am on it, the regular release. I tried the extended release version, and it made me want to sleep all day. I haven’t gained weight from it. I do exercise a lot, but I have cut down a lot on it recently. No weight gain on it. The side effect I get most from it is that it knocks me out to sleep at night. But I have had such sleep difficulties my entire life, so I am actually grateful for that.
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  #12  
Old Sep 23, 2018, 05:38 PM
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It was one of the first psych meds I took. I don’t recall the dosage, but they said I was at the max. I don’t remember much about it except extreme sleepiness. I slept 12 hrs a day, easily. I remember gaining a lot of weight, that quickly came off when they took me off it. But it could have been bc I went from super active to sleeping half the day.
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  #13  
Old Sep 23, 2018, 07:28 PM
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So far Seroquel is the only thing that has worked for me, compared to Zyprexa it doesn't cause me to gain a ton of weight. I haven't noticed that I've gained anything on Seroquel, but then again I am dieting and exercising so that could be a contributing factor.

Seroquel is massively sedating I find that if I don't get my twelve hours of sleep I turn into a grouch. Then again I tried a few different sleeping pills and none of them worked.

Honestly for me I haven't noticed any side effects with Seroquel. So far it's been the only thing that works.

I wish you good luck with the medication and hope it works for you.
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  #14  
Old Sep 24, 2018, 12:36 AM
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I also slept a lot when I was on Seroquel. But I`ve always had trouble sleeping so that was a plus for me.
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  #15  
Old Sep 24, 2018, 12:57 AM
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It may make you eat your couch.
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  #16  
Old Sep 24, 2018, 05:55 PM
piano97 piano97 is offline
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Seroquel helped bring me out of a dark place. I was cycling terribly and was a living hell everyday, and it stopped that within a few weeks. Was a wonder drug initially. Then a natural cycle of winter depression hit, we upped the dose too much, a few months later I had gained 25-30 pounds and was asleep all the time with no intention. I barely left the house. It made me eat like crazy, at night. If I was not in bed in time, the eating started and there was nothing I could do about it. Even if I was in bed, I would get up and sleep eat sometimes.

I just recently started coming off of it completely after successfully reducing the dose some, but the sedation didn't change, nor the eating and that is why I chose to stop it completely. It is not normal for a human being to either be asleep or laying down for 14-16 hours a day. Even if you function OK the remaining 8 hours. that does not match my history at all, nor does being overweight.

It was not easy initially and my 'last dose' happened a few different times. At the moment, I'm at zero for over 3 full days, the longest I've been. And I might be able to never go back now.

I would take it again if I got sick. But for weeks, not months. IMO it's very dangerous long term. I wish I would have stopped it a long time ago.

I'm in bed about 6 hours a night now, and I wake up constantly. I am feeling OK overall though. I feel stable mentally, and actually a lot more clear. If I go for a long walk in the evening and take valium/lamictal when I get home, and a little more valium an hour later, I get some sleep but like I said, I'm in bed 6 hours now, vs. minimum totally knocked out sleep 10 hours, often 12, plus daytime naps from sedation.

I have a lot of work to do behaviorly, whether it's building a daily routine, exercise, leaving the house more, etc. None of those things were going to happen on seroquel, even a lower dose. Just wasn't possible. If it were, it'd have happened months and months ago. And trust me, I tried, and tried, and tried. I want to be able to get, and hold, a job again. There is zero chance of that happening, for me, on seroquel. Impossible. I want to have a normal social life again. Zero chance of that on seroquel. Being 30 pounds overweight isn't exactly good for the dating life.

Whether this ends up being a smart decision or not remains to be seen, but to NOT try it would be even worse. I will never, ever, routinely take an AP again as 'maintenance'. I think maintenance is BS. For an acute episode, seroquel/zyprexa/others are great. A few weeks, maybe a month or two. Then pull back.

In summary, seroquel is the best medication I've ever taken, it really really helped me. Until it didn't. The terrible anxiety I had in the mornings (that would go away if I took a morning dose), I now think was withdraw. I do not have morning anxiety anymore. It's gone. Medications MAKE symptoms sometimes. The paranoia and intermittently thinking people are watching/following me etc. Gone. The teeth grinding. Gone. I can tell I have lost weight in the past week, and I think I will drop at least 5 pounds in the next month. That is my goal at least. Exercise will help that, less nightime eating will help, and just being off it will help I think.

So my advice is proceed with extreme caution. I did not, and paid a heavy price that I am now trying to pull myself out of and that process may take many months. I am so glad I made the decision to stop it. If it blows up in my face, so be it. At least I tried. Worse case now, I end up back on a very low dose, strictly to knock me out. 700mg is not a low dose lol. 500 isn't either, nor 400. I can not believe I was ever on that much. I wish now I would have stopped it after a couple months.
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  #17  
Old Sep 24, 2018, 06:06 PM
Unrigged64072835 Unrigged64072835 is offline
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The only thing I remember about Seroquel was that I ate a lot. It was also another terrible time in my life so I don’t remember much else.
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  #18  
Old Sep 24, 2018, 11:40 PM
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piano97, thank you for sharing. I have only recently begun to try APs (I tried Latuda a couple weeks ago... that was a disaster) so I appreciate your viewpoint on taking them for "maintenance."
I'm also glad you mentioned the behavioral stuff -- I already have an awful time lying around and not having energy to get things done due to depression (and then not getting anything done makes me depressed, and it's a cycle) but I hadn't connected those behaviors with the potential seroquel side effects, so thanks for putting that into words.
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Old Sep 24, 2018, 11:45 PM
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Quote:
Originally Posted by annielovesbacon View Post
piano97, thank you for sharing. I have only recently begun to try APs (I tried Latuda a couple weeks ago... that was a disaster) so I appreciate your viewpoint on taking them for "maintenance."
I'm also glad you mentioned the behavioral stuff -- I already have an awful time lying around and not having energy to get things done due to depression (and then not getting anything done makes me depressed, and it's a cycle) but I hadn't connected those behaviors with the potential seroquel side effects, so thanks for putting that into words.
Seroquel gave me suicidal thoughts and the worst depression of my entire life. I'm being dead serious. But when I went off Seroquel, everything went back to normal.
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  #20  
Old Sep 30, 2018, 08:31 AM
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I've been on Seroquel XR for about 7 months. It has helped me a lot and I´ve gained almost no weight at all (I've always been quite thin). It brought me back to life from severe depression twice. After the first depressive episode I was feeling better than now, but I'm doing okay. At least I'm suffering less, and at times I even feel fine. I guess I'm still recovering from the second depressive episode.

The negative effects are that sometimes I'm very tired in the morning, and I'm very scared that I'm going to gain weight. The risk of weight gain causes me some stress, I hope it's only temporary.

I hope that after some time I could go back to a lower dose. For me Seroquel has worked quite well.
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  #21  
Old Sep 30, 2018, 11:42 AM
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I was on a low dose, 150mg. The doctor (not my doctor, I don’t have a doctor ) wanted to increase it

I advise to proceed with caution
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  #22  
Old Nov 08, 2018, 05:13 PM
Fairy102 Fairy102 is offline
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I just wanna chime in and say I’ve been on seroquel for almost a year and I have not had any weight gain. I have been on other medications that caused me to have major weight gain. I think it’s worth giving it a try.
Sleep is something that is so important for my mood stability and this medication helps me sleep well and wake up with energy. I was hesitant to start taking it but I’m glad I gave it a chance.
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  #23  
Old Nov 09, 2018, 08:45 PM
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I never gained much weight on Seroquel. In fact, there have been periods where I actually lost weight. On 600mg and up, I did get a little more hungry, but it was never anything extreme, and I did not have to work out a lot to maintain my weight.
Overall, Seroquel has definitely helped me. My dose is always being tweaked according to my episodes. Sometimes higher doses are hard for me to tolerate, but lowering it a little bit helped avoid some of the serious side effects.
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  #24  
Old Nov 09, 2018, 09:39 PM
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I dont remember my dose but I was on it for a couple of months. I only gained a very small amount of weight but it made me extremely tired. I couldnt function on it so I quit taking it.
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  #25  
Old Nov 09, 2018, 09:50 PM
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BeyondtheRainbow BeyondtheRainbow is offline
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I was on Seroquel for a long time (9 years?) and it really helped me. I was on really high doses most of that time; 800 mg for a long time and eventually 1200 mg and then 1500 mg. The last 2 are higher than recommended but the hospital where I see my pdoc feels comfortable with that in certain circumstances.

I gained a little weight but nothing drastic. I could probably have avoided that with a healthier diet at the time.
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