Getting off of Seroquel

Posted by anniegk @anniegk, Jun 8, 2018

I have been on 300 mgs. Seroquel ER for over a year for augmenting my antidepressant which is 45 mgs. Of Mirtazapine. I decided to try and get off of the Seroquel. I was on 300mgs ER (extended release). I titrated down to 250 mg ER for 2 months without too many problems.than i titrated down to 200mgs ER just 5 days ago. My plan is to try to titrate off using ER tablets. My thinking is that perhaps the drug will remove its self from my system more gradually. I have had some nausea and a couple of episodes of diarrhea. I also have a very irregular heart beat and was started on 60 mgs of Propranolol ER (extended release) 4 weeks ago. It seems to be helping my heartbeat. I have wondered if the nausea and light headness is from the Propranolol, a Beta Blocker, or the dose reduction of the Seroquel. I also wonder if the way iam titrating the Seroquel is safe. My doctor says it will only take a couple of weeks…I think that is too fast of a taper after being on a drug for over a year. What do you think?

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@sharon1962

l was hoping someone could help me please. l am on 250mg of Seroquel a night and my GP has started saying AGAIN what a high dose l am on yet he was the one who sent me to a Psychiatrist to get diagnosed bipolar and anxiety and PTSD and l do have a heart issue. l am feeling really well mentally for the first time in a very long time and was wondering lowering down by 25mg to start with is that a lot to lower down straight away. l know l will be on meds for life but l think l can lower them slowly down and back to 125mg l was on before l had my nervous breakdown which was really shocking and sadly most of my family have disowned me as l was manic and do not remember much and yes l have tried to say sorry to my family but they will not listen so l have moved on from that part. So is lowering it down to 225mg tonight a bad way of lowering my tablets.

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Hi Sharon – my name is Sharon also. I hear your desire to lower you dosage and that is admirable. The less meds we can take, the better! However I believe I would be doing you a great disservice to suggest any changes on your own. You should always get your Dr.s approval for any changes–withdrawal or stoppiing can present more or different problems. You said you were feeling great so why mess with good thing. I also have had nervous breakdowns and a similar diagnosis. I take 300 mg of Lithium and 150 mg of Seroquel. I've been taking Lithium for 34 years. If and when you find the right meds and right dose it's worth taking them for the rest of your life. Hang in there, keep trying and God Bless You! Sharon, too!

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@buyearly

Hi Sharon – my name is Sharon also. I hear your desire to lower you dosage and that is admirable. The less meds we can take, the better! However I believe I would be doing you a great disservice to suggest any changes on your own. You should always get your Dr.s approval for any changes–withdrawal or stoppiing can present more or different problems. You said you were feeling great so why mess with good thing. I also have had nervous breakdowns and a similar diagnosis. I take 300 mg of Lithium and 150 mg of Seroquel. I've been taking Lithium for 34 years. If and when you find the right meds and right dose it's worth taking them for the rest of your life. Hang in there, keep trying and God Bless You! Sharon, too!

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Thank you Sharon it was my local GP that sent me to a psychiatrist to be diagnosed which l was and have been happy on the 250mg now for over 1 year yet at my last GP appt he complained about how many meds l am on and said maybe try to lower your meds yet l am the happiest and most stable l have been in years. My GP is a doc that doesn't like medication which is odd why become a doctor. Thank you Sharon l will be staying on what l am on.

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@sharon1962 It's heartbreaking to hear your family will not accept your apology. I can't imagine what that is like for you, as you were experiencing mania and can't be held totally accountable for whatever transpired during that time.

You are finally feeling good after years of not feeling well. Of course you want to stay on a medication that is working. May I ask if there is a reason he/she wants to lower the dose? Does it interfere with other medications or impact another illness or condition?

In my experience, general practitioners (GP) refer psychiatric patients for medications because they (GPs) often don't feel comfortable prescribing certain medications, especially high doses of an antipsychotic like Seroquel. Your GP wants to lower your dose. Isn't it reasonable to go back to see a psychiatrist if there is going to be a drastic medication change? Have you considered asking for a referral and asking to keep the dose the same until you see the psychiatrist? Do you otherwise have a good relationship with this provider? If so, you may wish to try and work through this. If not, have you considered changing providers?

It's important to advocate for yourself but this can be hard. There is an inherent power differential in your relationship with your provider. This is true for everyone. They can choose to no longer give you a medication that you need to live your best life. How do you/we navigate this?

You may want to get some help. I'm not sure your situation but there are adult mental health case mangers most places. The local county provides this service. Given your history and diagnoses, you are likely to qualify. Obviously I cannot guarantee this but it's something worth looking into in my opinion.

Below I have linked some resources for Rochester, MN. If you are out of the area, I'm sure you can do a quick google search and find something similar in your area.
https://www.hvmhc.org/mental-health-services/adult-rehabilitative-armhs/
https://www.dhs.state.mn.us/main/idcplg

Another option may be to ask the hospital system if they have a social worker or case manager to help you manage and advocate your mental health care.

I'm going to bring in other members like @lickitysplit @ireneb @rew4946 @sundance6 @sears @val56 that have recently discussed this topic.

You will notice that I moved your question to a previous discussion. I did this because there are many member that you can connect with here. You may also wish to scroll through and read past posts as well.

I know I threw a lot at you and I hope it isn't overwhelming. Mental health, overcoming stigma, empowerment, and advocating are topics I feel extremely passionate about.

May I ask if you are familiar with these types of services in your area?

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Thank you so so much for all your replies and help. lt's sad that my family have disowned me but it has been now over 10 years and mania was a major factor in disowning but also in 2011 my husband had a bike accident very bad and he has no memory of himself/me/our children/ grandchildren so l also live with that daily him not remember birthday's wedding anniversaries or me as his wife so a lot has played a part in my mental health which the GP is very well aware of. l saw him the GP on Friday and stood my ground asking why now do you wont to lower my tablet yet my cardiologist is happy with the medication l to take and that is what l kept telling him a heart doctor is happy with my meds so you should be also and l wont to see the psychiatrist again just to validate again l need my medication and he agreed but the funny thing is the psychiatrist wants me on 300mg of Seroquel so in a way it makes the GP look silly but l am staying on what l am on and l am planning on staying happy and mania free. Thank you again everyone for all your input.

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@lickitysplit

Looks like we were posting at the same time. We appear to be having the same amount of sleep success. Sorry to hear your still feeling confused at times. Maybe now is a good time to work on one thing at a time. Have you tried any guided meditations? I'm very novice at this but I did find it helpful when I needed it most. I used to end my day in the basement, away from my wife, kids and dog. Sit in a comfortable spot, usually on the floor against a wall. I'd set a timer for 10 minutes. I did this because if I didn't I'd find myself wondering how long I have been sitting there and it would become distracting. This way I know my timer will let me know when the 10 minutes is up. Anyway I've found some good short meditation videos on youtube. I've also sat in silence also. I feel like it was helpful to get my stress levels down and just focus on relaxing. Some people do this for extended periods of time. I just liked doing it for 10 minutes.

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I sure hope all is well and doing great, My Mania from the Seroquel is finally going away, Last few days have gotten better and I am getting so much done and happiness is looking good. Some of the medical issues I was having sight and feet problems are somewhat better now. Sure hope this keeps working for me, My number one thing that has made me so much better is no Idiot box watching unless it is Netflix or other premium channels that have zero advertising or news. We are all different so stick with a plan the works and makes you happy. Never give up….

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I'm somewhere around day 18 I believe. I think I'm pretty much back to "normal" whatever my normal is. Sleeping is becoming the norm at night now. I don't really find myself stressing or even really second guessing if I'm going to sleep or not. I do make sure I'm sleepy before going though.

I do have some left over habits that I'm dealing with. I'm so used to forcing myself to get up because I was so unaware of what I was doing when I was on Seroquel, the second I come to consciousness I would force myself to get out of bed because I was normally late. I had been shutting my alarm off without knowing it up to that point. 2 Days ago I woke up and forced myself out of bed to find out it was only 4:45am. By that time I was wide awake and just got up anyway and went to work. I woke up this morning and had to remind myself it was Saturday and went back to bed.

I'm sure this will all pass as well but in the short amount of time I've used Seroquel it has shaped how I live parts of my life.

While I can't comment on coping without Seroquel for other mental health issues its great to read about how people like @rew4946 are transitioning from a drug dr's told him he would never live without. You should be proud of yourself for accomplishing this and finding different natural strategies to cope with your mania. Obviously medication is here for a reason. There is no shame in depending on it to keep ourselves together but I think sometimes there is a bent, crocked, blurry fine line between between what we need or don't need. In a perfect world everybody would have their own personal dr that would monitor their patient 24/7 and walk them through the entire recovery process. Unfortunately this is not reality, nor do we have enough dr's to do this. The reality is a never ending stream of patients. Like an assembly line the parts never stop coming. You will never be caught up as a dr.

I think its because of this that patients get lost in the shuffle. Who knows what a dr. is thinking. They are normal people too. Much like that tape you wrap around a leaky pipe thinking "ugh, this should hold until I get a chance to fix it". I don't see it being much different for dr's. Unfortunately these are our lives they are affecting. And of course just like plumbers there are good dr's and not so good dr's. The trick is to find a good one.

Thats my rant for today. Hope everyone is having a good day!

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@ginak523

I just stopped it cold turkey and feel much better ! Thank you for responding .

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How much were you taking. Did you have side effects

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Day 22 I think. Last night was pretty crappy. I was feeling tired around 11:15pm and went to bed without much thought. I'm not sure why but my mind wouldn't calm down. I wasn't thinking about anything in particular but my mind just wouldn't settle down. I decided to get up and watch some TV around 12:15am, I also took a melatonin. I've never had a lot of success with it but I gave it a shot anyway. I started dozing off on the couch around 1:00ish. I thought that was a good time to head back to bed. In retrospect I should have just stayed on the couch. I tossed and turned for another couple of hours. Mind racing. I think I fell asleep around 4 and woke up to my alarm at 6:00am

One thing I did last night which isn't normal for me is I was playing Call Of Duty with my son last night. We packed it in just after 9 though and I thought it should be plenty of time to wind down but the best way I can explain how I felt last night was over stimulated.

Hopefully tonight is a better night. I'll try no video games before bed and see what happens.

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@lickitysplit

Day 22 I think. Last night was pretty crappy. I was feeling tired around 11:15pm and went to bed without much thought. I'm not sure why but my mind wouldn't calm down. I wasn't thinking about anything in particular but my mind just wouldn't settle down. I decided to get up and watch some TV around 12:15am, I also took a melatonin. I've never had a lot of success with it but I gave it a shot anyway. I started dozing off on the couch around 1:00ish. I thought that was a good time to head back to bed. In retrospect I should have just stayed on the couch. I tossed and turned for another couple of hours. Mind racing. I think I fell asleep around 4 and woke up to my alarm at 6:00am

One thing I did last night which isn't normal for me is I was playing Call Of Duty with my son last night. We packed it in just after 9 though and I thought it should be plenty of time to wind down but the best way I can explain how I felt last night was over stimulated.

Hopefully tonight is a better night. I'll try no video games before bed and see what happens.

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How much were you taking and for how long. Hang in there. You’ve got this!

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@tgjmstew

How much were you taking and for how long. Hang in there. You’ve got this!

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Thank you for the support. I was taking 25mg for a relatively short period of time (4 months). Long story short is I think life stress just caught up to me and put me in a mild depression which turned into insomnia and anxiety. I just wasn't sleeping. Like at all. At the worst point I had been awake for 3 days before going on Seroquel.

I feel that I could have been off it sooner had my dr warned me or even knew coming off of it would also cause insomnia for a couple days. Every time I skipped a pill I didn't sleep so I thought it was me.

Last night was not normal in terms of what I have been experiencing coming off of Seroquel. I feel that I have passed the hump a week or so ago so it was weird not to sleep. And I didn't feel the same "insomnia" as when it first started. I felt tired but my head was buzzing. Like I had too many red bulls. My first experience with insomnia I felt normal but I just wasn't tired at all.

It really might have been the video games and not enough wind down time. I'll see tonight what happens.

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