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Seroquel Withdrawal - reality check

Hi, I have been on Seroquel for 5 years up to 1100 mg (yes, one thousand one hundred) and two years ago because of severe side effects (problems focusing and severe trembling) and because my moods were very stable my psychiatrist accepted to lower it progressively to find a dosage that would allow me to function well with less side-effects. It's been two years of gradually eliminating this drug.

Everything went well up until Sept 2011 when I reached 125 mg. My moods were perfect but the insomnia kicked in mildly but when I reached 100 mg my family doctor told me to take either Gravol or Benadryl to help me because the insomnia was really worsening. That did help me but when I reached the day (a monthe after)  to go down to 75 mg it didn't work anymore for the Benadryl but a double dose of Gravol did. When I reached the day to go down to 50 mg (another month after) the Gravol worked only for about 6 hours and without it I coudn't even take a nap. I thought that my body would adapt gradually but it never did.

The plan with my psychiatrist was to take more time (an additional 4 months) for the remaining 50 mg but after trying to reach her and getting an appointment in a month and a half I decided that I couldn't live like that for an additional 4 months of torture. As a bipolar my sleep is very important. So, after a month I took away another 25 mg and I started to shake, got severe nausea and huge headaches. After two weeks of that I let go of the last 25 mg and thought I was dying. I had cancer before and went through chemo and the nausea was comparable. I kept telling myself that each day was getting me closer to being healthy and free of that extremely addictive drug but after 4 days I saw my family doctor who prescribed me Ativan 1 mg. I slept almost normally for a few days until the negative side effects of Ativan kicked in, the nausea became worst ( I couldn't look at certain food) and worst I started to have suicidal thoughts when nothing was wrong in my life and also feeling very irritable. I read the description of the side-effects of Ativan and quit that thing after 7 days of it and the day after the severe nausea was gone and the suicidal thoughts were just a bad dream (that could have taken my life!).

At that point I realized that my poor brain is trying to get back to normal after years of heavy duty Serqquel use and that it may be too sensitive at the moment to add anything else. Beside my lithium, my synthroid and my Tamoxifen (post-cancer therapy) I don't take anything else not even a Tylenol. After quitting the Ativan, the severe insomnia (about six 20 minutes bouts of sleep during an entire night in bed and an incapacity to nap kicked back but since I knew what was on the table I kept repeating to myself  that eventually I would start to sleep again.

As of today, a month after stopping completely Seroquel I see slow progress, three days ago I was able to have a 5 hours sleep (cut in two) and last night I got a total of 6 and a half hours (2 hours-4 hours-half an hour over a 9 hours period). The nausea disappeared last week and only a mild discomfort is left in my stomach and the light headache is still there but it could just be the lack of sleep.

I wrote this because I couldn't find the info on the internet and usually people who take the medication at a low dosage report no side effects and the pharmaceutical companies were writing that the effects lasted only a week and were light. It is for those who take over 300 mg that I was reaching out to. Even though I am on my way and nothing is perfect right now I am improving and even though my body aches of not sleeping my mood is lively and my concentration is back. My psychiatrist had told me that my severe depression of 8 years ago might have affected permanently my capacity to focus and concentrate and for an avid book reader like me I had put the books aside after trying to read but getting tired of reading the same paragraph over and over again. Guess it was the Seroquel after all who did that because I just read an entire book in three days and I was so proud of myself.

People say it is not addictive but I don't agree. I want to add that this drug helped me when I was vulnerable and it allowed me to do the necessary changes in my life, in my beliefs and in my way of interacting with other people and the world in general. That is why I am able to live without it. The drug was a tool. The drug can numb your symptoms and you think that your problems are gone but these powerful drugs will never produce a miracle in yourself, you have to do the work. I am happy to be off of it but I know that I needed it even though it had great side-effects.

Good luck to anyone going through the same withdrawal and who is trying to cope. I will post later when the effects are gone in order to leave a full testimonial of Seroquel withdrawal.

Marie-Lou
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Avatar universal
hi mary lou,

thank you for sharing your experience.  i have been searching blogs and support groups and counseling for ways to understand why my boyfriend of five years committed suicide a few months ago.  although i am repeatedly assured that it was not my fault by family, professionals, and friends, i myself have trouble believing i could not have been more supportive.

he had been on 150mg of seroquel (as well as 100mg of zoloft) for the last 18 years, and began to taper off early 2012.  he was fine and living better than ever.  then, about 2 weeks after he went down to zero mg (of both drugs) he began to have severe insomnia followed by panic attacks.  within another few weeks he was back on both pills at increased doses (450mg of seroquel), temazepam for insomnia which did not work, and 40mg valium a day for anxiety.  3-4 weeks passed and the pills were not taking effect, and symptoms of insomnia and panic ever increasing along with talk of suicide which he was fearing.  he hardly slept, needed to take leave from work for his last two weeks, and had lost a significant amount of weight.  finally, after 6 weeks he took his own life.

your story is helpful to me as it reinforces the idea that it was not me that was at fault, although I don't currently believe this.

best of luck to you
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Avatar universal
Getting back to a normal sleep pattern is difficult but it can happen. It did for me. My concerns about the link between NO SLEEP and GOING MANIC was on my mind when my doctor suggested to take Gravol. You get used to it so don't take it for long periods but once in a while it feels good just to have that in my night time drawer just in case.... Instead of panicking as I watch the clock in my bed, I get up, take a pill and let the magic happen.

When our sleep is more stable we feel much more at peace.

Good luck.
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Avatar universal
As I was reading your withdrawal symptoms from Seroquel I can totally relate to a lot of what you were saying.

I was put on seroquel just under a year ago for bipolar disorder, 600mg to be exact.  I was also put on Lithium which I have found to be really helpful, for bipolar disorder of course.  When you say that the seroquel gave you a certain ability to function and to sleep well, I truly can agree with you.
As time went on I started to gain weight, my appetite was incredible and all I wanted to do was eat.  I had horrendous joint pain, I could not even bend over to get my shoes on, my husband had to do it for me.  This started to get to me and I knew I had to get off it.  The first time my psychiatrist reduced it, I was fine at first but in the end had to go back to my regular dose.  Second time I begged hime to get me off it, he gave me another form of medication to increase gradually while I slowly tapered off the seroquel.  I am only just free of this drug.  I have lost over 20lbs in weight, my aches and pains are almost gone, but the bad thing is the sleep.  I am not able to fall asleep until late, I am waking up early, I have no appetite and am having to force myself to eat.

I was doing really well and now of course am scared because when I do not sleep as those with bipolar know, it can be very destructive.
Anyway I wish anyone coming off seroquel the best off luck.  As I say when I was very bad it did the trick, as with all drugs in the psychiatric world it is all trial and error.
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Avatar universal
My brother has a heart condition that is stabilized with pills......
My best friend has diabetes type 1 which she stabilizes with insulin.....
My co-worker has a chronic knees problems that he stabilizes with anti-inflammatories........

My brother is a smoker and a heavy drinker......
My best friend eats desserts at every meal.....
My co-worker is nearly 300 lbs.......

You lose control of your life and are instable psycholagically. You lose your wife and maybe even your work. You are diagnosed with Bipolarity. Yeah!!! You had nothing to do with your erratic behavior that ruined your life, a pill is going to fix you!!!!! Congratulations!!!!! I exagerate but I really wish for all bipolars who read me that a seed is going to grow in them to make them realize that if you are willing to look at yourself in the mirror an and dig at the bottom of yourself you can have a full life. This is true for non-bipolars too. They walk around unstable and then put the blame on somebody else when something goes wrong.

What was the event that triggered the initial onset of your Bipolarity? I've met dozens of bipolars and they all had a story to tell. Some did nothing about it and just left their life in the hands of their psychiatrist and continued their lives without changing anything: "It's not my fault, it's my illnes!". Or, there were the others, those that inspired me, some didn't inspire me at first and made me mad at first because I felt they were blaming me, now I know better, they meant I had to work on myself just like any other human being who came to this world imperfect: "My illness may be real but I have personal issues that jeopardize my stablity."

One is the easy way out and the other the painful path. One doesn't make you grow as a person and the other allows you to have a life as satisfying and productive as anybody without Bipolarity.

I am sowing seeds and one day I hope it will grow in those who read me even though they are not ready at first to hear my testimonial. I am writing for those who were told that they have to settle with what is left of them after a mental illness comes into their life and who think that with bipolarity their life is going to be less than what they hoped for before their diagnosis.

This is a message of hope and a kick in the butt for the lazy. Don't stop seeing your psychiatrist but if he doesn't meet your needs or if he doesn't listen to you, change him! Don't stop taking your pills but if they are making you crippled with severe side-effects, you have the right to ask for another treatment or medication. Don't stop seeing your psychologist, but if the approach leaves you cold or you don't go anywhere, change for another approach. BE PROACTIVE. THIS IS YOUR LIFE.

Good luck!! I send you all love and hope. We can all have a bright future but the rewards are bigger for those willing to do more work....
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Avatar universal
As I wrote it before this is my testimonial but after being diagnosed bipolar more than 10 years ago and having right now my new psychiatrist having doubt about my diagnosis of bipolarity I can tell you a mood disorder comes with psychological flaws that we all need to fix, like it or not, just because the mania and depressions that came along the way with your disease before being treated created them. Like it or not that is the truth.

Like I said, burying your head in the sand thinking that a pill will fix all of your mental problems is a nonsense and an insult to your intelligence and not showing a lot of love and respect for yourself. I am so sad when I read people like you who think they are too crazy to participate in their own treatment and leave everything in the end of the psychiatrists who treat them but I know that my testimonial will serve those who are strong enough and just ready to look at themselves in the mirror because they finally came to understand that the doctors only fix their brain's chemical imbalances and not their psychological flaws. Sorry to wake you up so abruptly. This is the truth. If you don't do that you will take a number of pills but will never be really stabilized suffering regular bouts of mania and depression and the doctors will adjust your medication again and you will see another bouts of mania or depression. I've met so many bipolars and those who relied only on pills kept getting relapses because their mental instability. Doctors are not psychics just psychiatrists.

Just like I wrote before, I did, the identification with the illness, I did the group therapy and the activities for bipolars and me too was so relieved that my problem was OUTSIDE of myself.

The bipolars I know who did well and who were my inspiration were those who took control of their lives and didn't ask a doctor or a bottle of pills to do the work they should be doing themselves.

As I wrote before, if it is only an illness explain then why there is always a psychological trigger for the unset of the illness?

The thing here is not to bring guilt to yourself. You are not responsible of your illness but you are of how you learn to deal with your moods and emotions. After more than 10 years of thinking just the way you did it took me two years, when I was weaned off my dear Seroquel to see that all the drugs in the world couldn't make me escape my personal issues. The less I was numbed by Seroquel the more they came up for me to deal with them. It would have been so easy and less painful to numb myself again like so many choose to do. By doing so, I would not having taken care of my illness I would have just been a coward and a liar.

Even if I didn't like what I saw, I decided that I wasn't going to numb me again with another pill in order to fix my personal issues.

Ted Turner is a bipolar and there many famous bipolars who have normal and productive lives, they do so because they found an equilibrium between pills and psychotherapy. Do you think they would be able to function normally if they were heavily sedated like so many bipolars end up to be, like I was and who are not able to have a normal job? Do you have a normal and fulfilling life since the diagnosis of Bipolarity Anne or are you learning to live with what is left of you? I was doing the later and I didn't see many bipolars at the meetings who had a normal life and the vast majority of them 10 years later remained the same after years of treatments.  Is that the life you dreamt of Anne? I was told I wouldn't be able to work again as a Math teacher because my illness was too severe and I couldn't concentrate and read more than magazines. I started to work part-time doing a replacement in a school. This feels so good. I wish that to you to get a life back. You wouldn't be in a forum if your life was happy and perfect. I am seeing the light at the end of the tunnel and I want to give hope to those who abandoned the ship of their own lives. There is hope if only you accept to face yourself in the truth mirror.

In my post I never condemned the psychiatrists as a whole, but I wanted to send a clear message about psychiatrists who are just humans like you and me are and who make mistakes and take bad decisions.

It is funny that you talk about Fibromyalgia because my sister was diagnosed with that illness about 8 years ago and told by the most respected specialist of that illness in Paris that she would be plagued with it for the rest of her life. He followed her for 3 years and his diagnosis never changed. She believed it and had accepted it but after moving to New York where she suffered again another bout of fibromyalgia she got sick again. She went to another reputable and respected Fibromyalgia specialist because her health was important for her. The diagnosis was not fibromyalgia. She had a tropical disease she had gotten on a trip to Africa!!!!! It is very tricky to diagnose an illness when there are no actual test. There is a TV show called Mystery Diagnosis that tells stories like that.

When you live for years with a mental disorder that is not taken care of you develop psychological flaws and bad habits due to the fact of not being treated. You may not have been beaten and sexually abused like I was but you have to face your personal issues too. It is not your fault, it is just work on your plate. It is up to you, you deal with them or you just take another pill to erase the problems.

The pills are not the problem, it is our use of them. Doctors are not the problem it is our use of them. They are not psychics, they use what we give them. Are you totally sure that you give them an unflawed and unbiased description of your symptoms or do you skip on a few details just like any humans would do in order to look good or just not to look totally insane? They use what we give them and you are not Mr. Spock, you are NEVER NEUTRAL. Bipolarity is not a problem either, it is just a disease but because it is a mental disease you have to do the hard work of separating the disease from the personal issues that melts into one another.

The truth will set you free Anne. Putting the blame on a mental illness for your problems in life is the easy way out. Know yourself, know your disease and then you will be able to have the life you are entitled to have bipolar or not.

I am Marie-Lou. I am not a disease.

You are Anne. You are not your disease. I sincerely wish you a happy and fulfilling life. Don't be afraid to do the work on yourself, your psychiatrist will then be able to give the real treatment and pills for your illness.

Good luck!

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Avatar universal
Just because you lied about your history doesn't mean that the rest of us did. There is a disorder called Bipolar and it is diagnosed by symptoms that I DIDN'T lie about. How about Fibromyalga - no test for it, shingles - no test for it... there are many disorders that don't have test, just symptoms. Your logic is flawed on this. Also although it is called a mood disorder, that is only one of the symptoms. You must have several symptoms for it to be bipolar.
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