Seroquel Withdrawal - reality check

[marielou5290]

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

[marielou5290]

When I was diagnosed with Bipolarity 11 years ago I was happy to find THE ANSWER to my problems and I was participating in group meetings of Bipolars and I was chatting online about this new thing in my life and doing endless research on the internet and buying books about Bipolarity.

11 years later: I am not a disease, I am not my work, nor am I my Master's Degree in Mathematics or my bank account. I am not either my painful past. I am just Marie-Lou. Bipolarity is not my identity anymore. It is a medical problem I take care of with the help of my psychiatrist and that's all.

Life is out there, life is not an illness.

I wish that you and all Bipolars have a happy life and all the mental stability to enjoy it.

[marielou5290]

About addiction, I understand that I was talking about being physically dependent. What I described were physical reactions, I am not a doctor..... I used the wrong terminology. You probably have more medical knowledge than me but one thing I can tell you is that doctors don't have all the answers, they are just humans. When I started the thread while I was enduring severe physical side-effects about stopping Seroquel it was the object of my discussion. The company that makes Seroquel mentioned one week of side-effects after stopping Seroquel. They don't mention the dosage and for how long the patients had taken the drug. My doctor was out of reach and my family doctor couldn't help either. I was reaching out to those facing the same thing as I was.

[marielou5290]

Let's clarify a few things..... Bipolarity is a mood illness or lack of control on your emotions. EMOTIONS ARE NOT A DISEASE, they are part of life and our mood changes with life events and people we meet. Emotionless Mr.Spock of Star Wars is not the reality. You can be angry, mad, sad, very happy and talk too fast and not be Bipolar. Let's not confuse things. Lack of control on your moods or emotions can come from various things. Your mommy and daddy never showed you how to control your temper as a kid so as an adult you have "tantrums" just like a two years old. This is just an example.  

ACTUAL FACTS ABOUT BIPOLARITY: There are no medical physical test to identify with precision a mental disorder like Bipolarity. It is purely subjective after analyzing symptoms and listening to what the patient is saying to you. It is an illness of emotions or lack of control of them. And the lithium test is there to make sure the levels in you blood are not going to make you sick physically, it doesn't measure at all your emotional state of mind. It is all subjective unlike measuring the insulin levels of a diabetic person or measuring your visual acuity or your heartbeat.

If you have psychosis and start seeing things then you can be clearly identified as a Bipolar or Schizophren but for those Bipolars like me who never experienced psychosis we are in Bipolarity limbo, it is pure speculation. A good psychiatrist will ask the good questions and will know that patients can lie about their personal history just because they can't say the truth about themselves just like me. They will lead their patients to an adequate treatment involving both psychiatry and psychology.

My new psychiatrist is having doubts about the diagnosis of Bipolarity. I have to confess that the three previous psychiatrists were never really able to tell what type of Bipolar I was. I went from Bipolar 2 but that didn't fit me really well, then I was Bipolar 1 with mixed states and even that was unclear. I was in pain emotionally so since they couldn't figure it out they kept raising the dosage of Seroquel until I felt almost nothing at all and I was happy to say that I was Bipolar instead of actually telling that I was battered as a child and molested sexually and that my mom was telling me that it was because they loved me.... Am I Bipolar or not is not important, it is finding a treatment with medication or not, with psychotherapy and me facing my personal history with my eyes wide open in order to put to rest this broken child who thought that she deserved to be hurt.

I am writing about my personal history and this is it's only value, a testimonial. But a testimonial has a value because there are many Bipolars who just like me have moods out of whack because something deeper in them is asking to be looked at.

You are doing wishful thinking when you think that a pill will fix your emotions and that your doctor knows so much about medicine that you can abandon the ship of your life to him. You are delusional or you have pretty scary skeletons in your closet that you don't have the guts to face. Having a mental illness is an opportunity to face the music to get a happier and calmer life. A mental illness is latent until events ignites it to manifest itself. There is always a trigger for the vast majority of us.

My faith and my will that you despised with your comments helped me look in the eyes the real issues at work that were there prior to being Bipolar. It is with God's help and my strong will that I did the necessary work that I was not able to do before. I was too weak and Seroquel was extremely convenient at a time when I was not able to face the music just like you probably are right now. Me too, was blindly in love with my psychiatrist and he could have given me two hundred pills a day and I would have agreed. I was so numb I couldn't think straight enough to see what was happening with my life.

When I reached out to a psychiatrist when my life fell into pieces I was asking help to rebuild it, I was instead killed mentally with a medication that is considered by many psychiatrists to be the equivalent of a lobotomy. I was not told that. They decided for me......

I am quite happy to have my whole brain back.

Work on yourself and pray God to give you the strength and enough will to find a balance between medication and psychotherapy. Life is not in a bottle of pills. You have to take ownership of your own life!!!!!

Good luck!!!

[Toddlett]

Everyone's experience is individual and unique... but I feel compelled to mention a couple of things..

1) BiPolar Disease is exactly that... a disease. You can't "talk" yourself out of a disease. You can't "wish" it away, "faith" it away, or even "self-help" it away. It is human nature to ignore something and hope it goes away and I am by no means advocating to embrace medication as the ultimate solution and agree with you that it needs to be "part" of and not the entire treatment..

2) There is a big difference between "addiction" and "physically dependent". Pain killers are like seroquel in that the more you use them, the more your body can become reliant on them. That doesn't mean you are addicted. It means you are physically dependent. If you are addicted to something, you use it out of desire for the results which becomes abusive. For instance if you have a script for 3 times a day but you take it 6 times a day because you like how you feel when you take it, that is addiction. If you have a script for 3 times a day but the pain returns more frequently or taking the prescribed dose is no longer affective, that is an indication of a potential physical dependency.

When you supplement the body's natural abilities (such as with pain killers) the body doesn't have to work as hard to handle the symptoms. Since it doesn't have to work as hard, it in essence becomes weaker, like a muscle that atrophies while in a brace. If you remove the brace, it is painful and difficult to rebuild the atrophied muscle, but it doesn't mean you were addicted to the brace.

Hopefully this makes sense. Best of luck to all.

[marielou5290]

Hi Micheal,

Your comments about the side-effects of Seroquel on your personality resonated a lot with me because after 4 months of being off Seroquel I realize that this medication was killing my personality. Yes, my moods were not only stabilized (what do they mean about that anyway?), they were non-existant and I didn't even know it.

In the last few months of self discovery many friends have made similar comments about having Marie-Lou back after years of having as a friend a:  "zombie", "dopped-up", "frozen", "lethargic", "emotion-less" Marie-Lou they didn't recognize anymore, that scared them and made them feel so sad for that lively, driven and happy person with a strong personality they once knew. Some confessed that they contacted me less often for that reason. They didn't know how to deal with that lifeless Marie-Lou. The world is changing around me right now because I can see it with a clear mind. It is quite beautiful.....

I realized one very scary thing, when I had cancer in 2009 I didn't cry when I found the lump, was not really nervous while I waited to get the results and when they confirmed it, I didn't cry just listened to the year-long program ahead of me as if they were telling me the temperature. At the chemo center, I wasn't scared, just thought it was a long day and being extremely sick was something I had to go through. People were in haw in front of my strength and me too!!  I think that my famous "strength" came from a bottle of Seroquel numbing me of my real emotions, stealing them from me. I was not strong I was emotionless.

This is so sad. I feel that this heavy dosage (1100 mg) stole me of a normal life. I posted in February that it had been a tool but I think I should have been told to dive right inside of me at the bottom of my pain, take it in my hands, look at it, face it and find a way to deal productively with it. At first, maybe you need medication to help you in the first stages when your world seems to collapse around you and you can't bear the pain but you should be lead gradually toward the real reasons why it hurts you that much and help you find a real long-term solution not bury it under a numbing medication.

Is it  a cure if you erase normal emotions? I should have been scared of cancer, I had a huge tumor and 13 metastasis, I could have died, I should have cried and I should have worried. I should have been mad at God and life for this horrible thing that was happening to me. Instead, I zombied through the entire year of cancer treatments as if I had a headache. And at one point I nearly died and I was not scared!!!!

Is it a cure if you can't use your emotions to react to real dangers, be it an illness or dangerous persons or situations? Our emotions are not a problem, it is our reaction to them, it is our control on them, it is how we face them, it is the extent of them that is the problem. Pills numb emotions that give us vital information about the world around us.

Emotions are not our enemy. Our lack of control over them could mean that we are not able to face something else that can't be remedied by pills, our family history, the tough life we lived, our mistakes, the job we lost can tell us more about something we prefer to numb with pills, our true self, the human being that is imperfect, that needs to learn how to interact with others, deal with life events and to take good care of ourself through self respect, self love. By stopping Seroquel, the emotions came up but I was ready to take good care of them because of years of psychotherapy and just allowing me not to be perfect like I used to think I had to be in order to be loved and to succeed in life.

I realized that Seroquel and my other medications were just a security blanket against the truth about myself. Through the years of psychotherapy I was more prone to expel out of myself the real reasons why I was sometimes a little "incompetent" as a full grown adult. I didn't like the imperfections at first, now I laugh about them and I realized that my REAL strength is my very REAL capacity to face the truth about myself and to love and appreciate my very and unique personal beauty emanating from both my qualities and my defaults. When they say : "The truth will set you free", it is TRUE.

In conclusion, it is sometimes easier to take a medication and "to wear" an illness as the reason of our incompetency in life than facing the real issues in our lives and about who we really are. That is a very sad but so true reality for many of us.

Thanks for reading me, I hope this inspires you Michael and others in their quest for mental stability. It is not about rejecting medication and our psychiatrists but about using them as productive tools to help us sort through our problems not make them disappear by swallowing a magic pill or letting our doctors do the work we should do ourselves. A psychiatric illness can be a wonderful tool and opportunity to know ourselves better.

[Cammed]

You are no longer emotionally blunt?

[MichaelTheArmenian]

I have never been on as large a dose of Seroquel as you. For me, 400 mg (my current dose) has been plenty. I suffer from Bipolar Type II and this medication was a small miracle when it was first prescribed, but that was several years ago. It pulled me out of a major funk then and allowed me to sleep. Now I can't sleep without it and I think it is addictive for that reason; or at least it should be characterized as a drug that can cause dependence. My diagnoses, along with some of their signs and symptoms, are as follows: I have anxiety and depression, along with hypomania which primarily causes impulsivity, insomnia, intrusive thoughts and suicidal ideation. I also suffer from social anxiety. This isn't the complete list, but we'll stop there. As a mood stabilizer, Seroquel has worked to some degree, but I am lethargic most of the time, I have poor memory, and little to no motivation. When I take it, I can’t get enough sleep. I don't LIVE, I exist. I feel that I have a learned helplessness with the issues surrounding my mental health. While I have a healthy body -- knock on wood – it is a shame that, mentally, I feel as if I have a terminal illness. But I digress -- back to the Seroquel and your post ...I felt an affinity to what you wrote right away, having found your comment when I googled, “my poor brain bipolar.” Your description of your problems with focusing; striving to find a dosage that would allow you to function well with less side-effects; the instructions from the doctor to take Benadryl for sleep (as if this would help with chronic, severe insomnia); the frustration of having available appointments scheduled so far out with the expectation that you’ll manage through the torture for months and months; your description of how, as a bipolar, sleep is very important to you (this struck me because this has become an obsession for me because, without sleep, I can’t cope); that a family doctor would prescribe you anything without contacting your psychiatrist first, especially a strong benzodiazepine like Ativan; that you take Lithium, which is the next med my provider wants to “try;” that eventually, after weaning off of Seroquel, your mood is lively and your concentration is back (my primary reason to titrate off of it).  It was a scary thought that, as your psychiatrist told you, your severe depression of such a lengthy time might have affected permanently your capacity to focus and concentrate, but that you proved him/her wrong. All of those things that you wrote about resonated with me. People say Seroquel is not addictive but, like you, I don't agree either. It was helpful at one time and I’m glad it’s available, but it isn’t the answer. You said the drug was a tool and, by the same token, I would call it a weapon to fight a war with many fronts. But now, I wish to press on without it, under the care of my healthcare team. At any rate, I appreciate you sharing your progress.