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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I've read this thread in it's entirety and have found some very good insight on the challenges ahead on getting off Seroquel. Thank you all for sharing. My Dr. has prescribed Seroquel to me last October (27th to be exact). I have no underling conditions that I am aware of other than suddenly not sleeping. I had a stretch from August to October where life got real stressful. I've always been a finicky sleeper but very predictable. I normally can't go to sleep until my body tells me its time. 6 hours of sleep is/was the norm. During August - October this suddenly started to taper off. I'd lay awake thinking about the problems that were unfolding in life. I started sleeping less and less. Some days sleeping 1-2 hours and others just not sleeping. I tried over the counter sleep aids like benadryl with minimal results and mornings were awful. I started mixing THC pills (I'm also not a THC user) with benadryl with very negative affects. My breaking point was late October after being up for 2 days straight, desperate for sleep I took multiple benadryls and THC pills. I've never had a panic attack before so I can't say for sure, but I can only imagine I had one. After having limited sleep for months, being up for a couple days and the combination of the pills I had what I would consider my ultimate low. At the time I thought I was permanently broken. I literally paced in my basement for 4 hours. I checked my step counter I wear and walked 5 miles down there before passing out.

On day 3 of no sleep I was able to get ahold of my Dr that day desperately seeking help. I'm generally not an anxious person but the amount of anxiety I had was levels I've never experienced before. Like my stomach was eating itself. He prescribed me Seroquel 25mg. I quickly googled it and that only added to my anxiety. He said it was safe and I could cycle off and on and use only as needed. I spoke with a pharmacist who also echoed what the Dr had mentioned. My experience with this hasn't been negative but has also been unpredictable. The hard shut off's took a while to get used to, especially while being sleep deprived. Like an elevator free falling down before crashing into the basement and its lights out. Mornings, while better than benadryl also took a while to know what to expect. And the ear ringing...My god the ringing. Anyone else get this? Its my measuring stick on how much Seroquel I have in my system. Loud high pitched means I just took it. Quiet low pitch is theres not much left.

I was getting frustrated with the unpredictability of this drug. Am I going to sleep tonight? Is it going to work? I've tried alot of techniques. Religiously taking it at 10:00pm and go to bed at 11:00pm expecting to sleep... Nope, not all the time. Being drugged and not being able to sleep is not a good feeling. Take 25mg to late in the evening and pay for it in the morning. I've had so many morning work meetings that I don't remember its scary. I've taken 1/2 pills that worked some nights and other nights I'm taking 3 - 1/2 pills in 45 min intervals to get some sleep. And some weeks where before I take a pill I'm struggling to stay awake on the couch, head bouncing up and down. Excited, head up to bed with no pill to sleep...NOPE wrong again, its time to get up and play!

For those of you experiencing the same thing I have found something that works for me. I have limited the amount of sleep I get based on how much sleep I used to get. So, I gave myself a 12:00am curfew. During the week I take a 25mg pill @ 11:30pm and bed @ 12:00am and alarm set @ 6:00am. Weekends I do the same evening routine but set an alarm @ 8:00am. Even if I stay in bed awake I find it helps me have a schedule if I stay tired. I love to sleep but weekends will really throw me off for Monday/Tuesday if I let myself sleep till 11 or so.

Anyway, I've come along way mentally since October. Everything is sorted out and I'm feeling good so its time to say goodbye to Seroquel which seems to be harder than I expected as most of you are aware. I feel I am in a good mental place to give this next challenge a go. Its proving to be harder than it sounds. 2 days ago I had my mind set to give this the best shot I can.

Sunday, day 1. Skipped the pill. The thought was I would just hang out on the couch and either watch some TV and hopefully doze off for a couple hours. Nope. Wide awake. The shitty thing about putting a strategy together in your mind about how to conquer your enemy is that your enemy is also in your mind. Seems like when I feel things are predictable and I want to put a plan in place that night suddenly becomes unpredictable.

Monday, day 2 (yesterday). I was as grumpy and disorganized as I would expect someone who hadn't slept for a day would be. Tired all day, thinking about how good that night will feel to crawl into bed and give pill-free sleeping will be. I was looking forward to bedtime all day until bedtime rolled around! I struggled through the evening. I have 10 and 12 year old boys. Very energetic. Its was all the patients I had to get through the evening. We read every night. I read one page, they read the other. It took all the concentration I had to get through every page. Constantly assessing how I feel inside. (do I feel tired? Am I going to sleep? should I just take a pill? Not? Don't forget about your meetings tomorrow, you have to be coherent). My thoughts are what might be whats throwing this plan off. Anyway, last night it just wasn't happening. My body was physically exhausted but my mind wasn't ready to shut off. I'm wondering if this is Serquel related or if I do have some sort of underling condition. Again, I feel "normal" so I don't know what's going on here. I had a couple of flash pass outs on the couch. I consciously prepared to sleep on the couch if the opportunity presented itself. I found twice where I fell asleep for a handful of seconds before jolting back awake, and wide awake.

I gave in yesterday. I took a 1/2 a 25mg pill and went to bed. I do feel that 12.5mg for me, makes going to sleep feel more natural. Not the dropping elevator feeling. Funny how your conscious can convince you to give in. "Just do it. You have a busy day tomorrow." Ugh... There's always tomorrow as they say. I'm fully prepared to rip the band aid off but I want to make sure the wound is healed and I'm not going through the suffering for nothing.

So, question for those of you who have been successful in getting off Seroquel. The fully awake feeling I'm getting on day 2 of not sleeping. Is this a normal feeling from Seroquel withdrawal? I think I could have toughed out another day if I felt I was accomplishing something.

I was hoping I would feel exhausted but couldn't sleep or something. Yesterday I was starting to feel concerned that I wasn't feeling this way. Underlaying conditions have been a fear of mine. I've had a couple blood scans done and nothing has come up. Parkinson's, cancer and dementia are in my top 3 fears of why I am not sleeping now but have no reason to think it is one of those.

Sorry for the ramble!

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Day 3. No pills last night. I figured I'd give sleeping naturally another go. I thought I slept the night before on 12.5mg so even if I don't sleep I should survive. I was watching a hockey game last night on the couch and started getting sleepy. I fell asleep a couple times or at least I'm pretty sure I did inbetween the 2nd to 3rd intermission. 1 minute the intermission started and the next minute it was puck drop. I watched for a couple minutes then next I knew there was only 8 minutes left. I watched my team lose with 1:30 left in the game. Damn you Calgary.

After that I debated if I should just sleep on the couch or risk waking myself up by getting up and going to bed. I chose to go to bed. Once in bed I just got comfy and waited. One thing I picked up during the last 4 months is breathing exercises. Just simple ones. 4 second inhales, 4 second exhales. If nothing else it gives your brain something boring to concentrate on. I can't tell you how many thousands of times I've counted to 4. It also helps judge if your falling to sleep. When I'm getting close to sleeping I'll realize I've stopped counting. Then I start again. Its somewhat comforting.

I didn't sleep great but I did sleep. I'm not sure when I fell asleep but I woke up at 2:30am then back to sleep and woke again at 4:30am and I was awake. I got up, made some coffee and headed to work so I didn't wake the house. Hopefully no one hears the coffee grinder! So hear I am 2 hours early for work.

All and all I'm going to call this a win for the night. I still have ringing in my ears but I hope it goes away shortly. I've also noticed some other things I haven't felt in a long time:

1. While getting sleepy on the couch, I got that tired eye feeling. The one where your eye lids feel scratchy. I haven't felt that in a long time. Like I was naturally getting tired.

2. Yawning. Not sure about anyone else but through my journey of insomnia and Seroquel my yawns have either disappeared or feel shallow and unfulfilling. Silly I know but my kids used to make fun of me that I yawn like a lion. Giant, loud, deep yawns. I had some nice ones yesterday. Not 100% yet but the lion is coming back.

3. Headache. Its not bad at all but I've had a minor (very minor) headache. I don't actually remember having a headache in the last 4 months.

4. Body temperature. I read a few others noticed this too. Its probably the single thing I'll miss about Seroquel. I'm naturally hot all the time. My wife and I fight over the thermostat. I have this really thick heavy down filled comforter on our bed. I love the weight but I normally sleep with my feet poking out. Since taking Seroquel it drops my body temp to a very comfortable level (for me) that I loved for sleeping. I was able to curl up in a ball under the covers. Not anymore. It was feet out last night. Oh well, its a small price to pay.

5. Tingly hands and feet. Not sure what this is all about but I have some slight tingling in hands and feet at times.

Another nice thing as limited as my sleep was I don't have brain fog.

So yeah. I feel positive that things are going in the right direction. This pill is a bugger. The amount of self doubt this little pill will stick in your head is staggering. I think confidence is really important here. You have to constantly remind yourself you're not broken, its just the withdrawal from this pill. The longer you can go without it the better you'll feel. Like any other "addiction" it just takes focus, a bit of determination and stay positive that everything will be OK. If I can do this I think anyone can. I'm a wuss when it comes to personal comfort. Sleep has always been my safe place. I'm built for comfort!

Have a good day everyone.

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I have been on this Seroquel for bipolar 300mg for the past 7 years. My doctor cut me off as I could not afford blood work due to lack of insurance. They had me on blood pressure meds also with blood pressure sometimes at 180/102. I started chopping up the Seroquel 300mg I had left into smaller doses over the last 6 months or so, no other meds. Lost some weight by tapering off food from 185lbs down to 145 lbs in four months. I started eating more food and now 170 lbs due to looking like skin and bones. Blood pressure is around 117/68 now at 65 years old. Problem is now still on about 30mg? of Seroquel. I stopped taking any Seroquel a few days ago, Been awake for a few days, confusion and chest pains come and go. Found some old tramadol 50mg and it is making me feel a little better. Seroquel will kill or ruin your life if you do not get off it now. Sad I will no longer consult or seek medical help as it has failed for the past 20 or more years. I would rather take my chances of dying before i will ever seek medical in this country's again. It is my choice and I will get over it without the bad advise and deadly drugs prescribed to me. Anyway I will get over this either way, day 3 now.... Prayers please

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@rew4946

I have been on this Seroquel for bipolar 300mg for the past 7 years. My doctor cut me off as I could not afford blood work due to lack of insurance. They had me on blood pressure meds also with blood pressure sometimes at 180/102. I started chopping up the Seroquel 300mg I had left into smaller doses over the last 6 months or so, no other meds. Lost some weight by tapering off food from 185lbs down to 145 lbs in four months. I started eating more food and now 170 lbs due to looking like skin and bones. Blood pressure is around 117/68 now at 65 years old. Problem is now still on about 30mg? of Seroquel. I stopped taking any Seroquel a few days ago, Been awake for a few days, confusion and chest pains come and go. Found some old tramadol 50mg and it is making me feel a little better. Seroquel will kill or ruin your life if you do not get off it now. Sad I will no longer consult or seek medical help as it has failed for the past 20 or more years. I would rather take my chances of dying before i will ever seek medical in this country's again. It is my choice and I will get over it without the bad advise and deadly drugs prescribed to me. Anyway I will get over this either way, day 3 now.... Prayers please

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That's terrible! I'm in Canada so most meds and blood work etc. are covered I've not had alot of dr. interactions in my life so far. This episode I had was the most sever thing I've had to go through. I feel that alot of dr's don't put enough time in effort into their patients or drugs they prescribe. My dr. has been "good" but almost to a fault. I've been having phone calls every 2-4 weeks through this time. I've expressed multiple times to him that I don't want to take anything that's addictive or habit forming. He's assured me multiple times that Seroquel is safe and non habit forming. Now, where this gets really concerning is he had asked if I wanted him to change my prescription to something else. He literally opened the door to anything I wanted. He suggested he was comfortable prescribing me lorazepam, ambiean or some other anti depressants. I told him I just wanted something to help me sleep. He reminded me that I was in extreme distress when I called him the first time. I had to remind him I had been up for 3 days and strung out on Benadryl and THC pills and I'm not normally depressed or anxious. It was weird. It was like I had to convince him I don't need any other drugs.

I'm sorry to hear of your current state. I do still remember what its like to be up for 3 days though. There is a time when meds help and I think you are in need of some to get some good sleeps in, regroup and continue your journey to a healthy state.

I wish you well.

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Not as bad today as yesterday, I have spent most of my time in the past year at home leaving to Walmart once a week for food etc. I am so sick of all the drugs for bipolar over 20 years destroying my health. I have been through all of them I will bet and Seroquel made me feel better and sleep. It has lead to way more health problems and more damn drugs for each problem it has created, (scam). I have to learn to avoid and never use any prescription drugs again and not even going to take the corona virus shot. American healthcare is only for certain percentage of the people who can afford $1200 per month for a high deductibles and medical care where they tell you to go and who to see plus copays . Anyone who comes to America should never trust the healthcare here unless you have lots of money and use prescription drugs for everything in life. The doctors and TV (idiot box) show how well and happy prescriptions can make your life. Trying to keep calm still, Health for cash , the more you pay, the more you will lose mentally and financially.

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@rew4946

I have been on this Seroquel for bipolar 300mg for the past 7 years. My doctor cut me off as I could not afford blood work due to lack of insurance. They had me on blood pressure meds also with blood pressure sometimes at 180/102. I started chopping up the Seroquel 300mg I had left into smaller doses over the last 6 months or so, no other meds. Lost some weight by tapering off food from 185lbs down to 145 lbs in four months. I started eating more food and now 170 lbs due to looking like skin and bones. Blood pressure is around 117/68 now at 65 years old. Problem is now still on about 30mg? of Seroquel. I stopped taking any Seroquel a few days ago, Been awake for a few days, confusion and chest pains come and go. Found some old tramadol 50mg and it is making me feel a little better. Seroquel will kill or ruin your life if you do not get off it now. Sad I will no longer consult or seek medical help as it has failed for the past 20 or more years. I would rather take my chances of dying before i will ever seek medical in this country's again. It is my choice and I will get over it without the bad advise and deadly drugs prescribed to me. Anyway I will get over this either way, day 3 now.... Prayers please

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So sick of these self righteous doctors just cutting people off these dangerous meds. This needs to be against the law! Animals are treated better in the United States.

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@sears

So sick of these self righteous doctors just cutting people off these dangerous meds. This needs to be against the law! Animals are treated better in the United States.

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I agree. I don't know how this is even legal. Didn't dr's become dr's to help people. Thought it wasn't about the money! I do know a close friend of mine had been on Percoet for decades for a back injury. Theres no doubt he was addicted to them BUT it gave him a quality of life that he was OK with. After 20+ years he got a new dr that told him he wasn't going to fill his perscription anymore. My friend literally went off the rails. He was buying black market meds, sleeping pills, drinking heavily etc. Long and short of the story is after 5 years of medication abuse and 3 strokes later he's now in a care home with circulatory dementia at the age of 61 and there is no sign of him ever leaving that place. And why? Because there was no plan in place to get him off the meds in the first place. He was also totally fine with the perc's and any damage it might have caused him. He had a pretty good life. Its sad. I haven't been able to bring myself to visit him but I've stayed in contact with his daughter for updates.

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Thanks to everyone for there compassion on this issue, It has been about 7 months since they cut off prescription's. I had enough to go this far cutting them in half over and over, Now getting towards the end of pills. Before I run dry on them I am stopped complete all three days ago, Was tired today and nauseas most of the day but not throwing up yet. I will try a full glass of wine tonight and see if it winds me down some. I dont drink so maybe it will work. Anyway the lord is now in control for me and please give me some life back from these dealers of TV drugs.

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@lickitysplit

I agree. I don't know how this is even legal. Didn't dr's become dr's to help people. Thought it wasn't about the money! I do know a close friend of mine had been on Percoet for decades for a back injury. Theres no doubt he was addicted to them BUT it gave him a quality of life that he was OK with. After 20+ years he got a new dr that told him he wasn't going to fill his perscription anymore. My friend literally went off the rails. He was buying black market meds, sleeping pills, drinking heavily etc. Long and short of the story is after 5 years of medication abuse and 3 strokes later he's now in a care home with circulatory dementia at the age of 61 and there is no sign of him ever leaving that place. And why? Because there was no plan in place to get him off the meds in the first place. He was also totally fine with the perc's and any damage it might have caused him. He had a pretty good life. Its sad. I haven't been able to bring myself to visit him but I've stayed in contact with his daughter for updates.

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So Sad we are being controlled by an unknown few!
Sundance(RB)

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Day 4. No pills. I really feel like I've gotten over the hump. I think the hard work is done! I did my usual evening stuff. Put the kids to bed and relaxed on the couch. I find myself over analyzing how I'm feeling still. I find I'm self assessing too early in the evening on if I feel tired or not and worrying that I'm not feeling tired at 9:00pm... I have to remind myself I never go to bed at 9:00pm so yeah, your not tired dummy.

It didn't take long to start feeling sleepy after winding down. I am still trying to stay up to at least 11:30 - 12:00am to make sure I'm tired and stay tired. I was struggling to stay awake so I packed it in at 11:30pm and went to bed. I really don't remember laying awake for long. I woke up at 1:30am and had to desperately go to the bathroom. I was wondering if this was withdrawal related until I remembered I I had salty popcorn before bed and it was probably the salt. Funny how you start second guessing everything.

I woke up before my alarm at 5:20am this morning and was very awake so it was time to get up. Slowly I've noticed I'm sleeping in a little at a time. I'm very alert and clear headed when I'm waking up so its not that bad.I feel that things are going in the right direction and my body is getting back to doing what it does.

On a side note. Today is the coldest day of the year hear. Its a balmy -34c and -43c with the windchill. Thats -29f and -45f for the U.S folks. brrrrrr!

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