aries19835: Tapering off seroquel

[aries19835]

Hi, I have been taking antipsychotic drugs for 12 years now. Initally on 5 mg abilify, then 10mg zyprexa, then 15 mg zyprexa for about 8 years, now I am on seroquel. Initially I was on 200 mg seroquel, now tapered down to 175 mg seroquel after 2 weeks. I have had strong withdrawal symptoms after being on generic olanzapine after 4 years out of 8 on zyprexa. Hoping to be able to taper off seroquel and be drug free. Wish me luck.

[SquirrellyGirl]

Welcome again, Aries!

 

This is your intro thread where you can document your journey tapering off Seroquel, a place for you to ask questions, give updates, express concerns, etc.  By clicking "Follow" above, you will be notified when someone posts to your thread.  

 

It would be very helpful for all of us if you fill in your signature block with your med history.  I know you just put it in your first post, but your signature shows up under every post you make and gives us your history at a glance, very helpful as your thread grows and as you post elsewhere in the forum.  Instructions are here:

 

Please put your Withdrawal History in Signature

 

Please include any other drugs you may be taking, including OTC and recreational. This helps us give you more informed suggestions for your situation.

 

I'm going to give you some links to get you started.  The whole point of tapering slowly is to avoid withdrawal syndrome, keeping you comfortable and functional along the way.

 

Introduction to AD Withdrawal Syndrome

Why taper by 10% of my dosage?

 

These links will help you prepare:

 

Tips for tapering off Seroquel (quetiapine)

Preparing to taper

 

Although we generally do not recommend taking a lot of supplements, we do stand behind Omega-3 Fish Oil and Magnesium.

 

These should give you enough to get you started.  Read through these and come back with questions.

 

I want to add that you may be thinking that the 10% taper will take a long time and you want to be done sooner.  Many come here feeling that way, but this is a harm reduction approach geared towards keeping the greatest number of members safe and comfortable while they come off their meds.  We suggest doing the first 10% cut and waiting for at least four weeks before making the next cut.  Keep notes on paper to track how you feel each day.  Note if symptoms come up, when, how strong, and how long they last.  After the first couple of cuts, you'll have a better sense as to whether you can cut a little more frequently (3 weeks?) or by a little bit more.  Some can go faster while others may need to go slower.   Once you read the above links you will understand.  It is much easier to go too slowly and maybe pick up speed a little than to go too aggressively and then have to up-dose and try to get stable again.  Much time is lost that way!

 

So, I'm glad you found SA!

SG

[aries19835]

Is it possible to taper off the drugs after being on drugs for 10+ years?

[SquirrellyGirl]

Yes, it is.  You might look through the Success Story forum to see how long those people had been on meds.  Success stories: Recovery from withdrawal

 

Here's one where she was on SSRIs for 16 years and off for five!

 

http://survivingantidepressants.org/index.php?/topic/10596-nadia-5-years-off-i-survived-antidepressants/

 

SG

[aries19835]

Most of the above mentioned are antidepressants not antipsychotic drugs. Such as zyprexa, seroquel, etc. Are there any success stories for antipsychotic drugs after being on them for 10+ years?

[scallywag]

aries, have you looked at beyondmeds.com?

 

One of the moderators here, "GiaK", established that site to document her recovery from "a cocktail of 6 psychiatric drugs that included every class of psych drug." (quoting from her signature here at SA).    Here's a topic where she's posted a video about her recovery through withdrawal symptoms: GiaK's video

 

Robert Whitaker in his book, Anatomy of an Epidemic, refers to studies comparing quality of life for people who stopped anti-psychotics and those who continued taking them.  The bottom line from those studies: people who went off the drugs had more symptoms in the first year or two, but were in much better shape than those who continued after 3+ years.

 

I hope that's helpful.

[SquirrellyGirl]

Agreed scallywag!

 

Aries, are you trying to find stories of success so far out for reassurance?  There is no doubt that one way or the other it is healthier to reduce the dosage of these drugs, even if coming off entirely proves too difficult.  When you have taken any psych drugs long term (20 years on ADs for me), then you need to look at the long term benefit of slowly SLOWLY coming off.  We long timers have nervous systems that have become very dependent on the meds to function, and they don't take kindly to having the trellis ripped out from under them, but if we make tiny adjustments, they can can heal.

 

Scallywag referenced some excellent materials, beyondmeds.com, Anatomy of an Epidemic, MadInAmerica.com, cepuk.org, all excellent sources to support the benefits of coming off these meds.

 

You can also use the search box above in the Success Story forum, using the drug names to find people.

 

SG

[aries19835]

My family and psychiatrist is not very supportive of me trying to get off the drugs. Any suggestions on how to make them change their minds?

[SquirrellyGirl]

Here are some links to help in that area:

 

What should I expect from my doctor about withdrawal symptoms?

How do you talk to a doctor about tapering and withdrawal?

Helping Family Understand

 

Sorry if the links seem impersonal, but already well-written about :-)  

 

Were you started on these drugs as a minor?

 

SG

[AliG]

Hi Aries.  You have been given some great information and links. These should help you to not only expand your knowledge base, but your family & Psychiatrist's as well.

 

Personally . I wouldn't be too concerned with the Psychiatrist , as unfortunately he possibly helped you get to this point . However, if he is writing the scripts I guess you have to comply to a degree. However, I would be judicious and also cautious.

 

If you read the links it could help and maybe if you can't get the book anytime soon, there are some You - Tube videos from Robert Whittaker and Dr Peter Breggin that could help your family understand a little more about withdrawal and the ramifications thereof.

These are some of the tools I have personally  employed to help some of my family members understand. It can be a slow and tedious process although definitely worthwhile in the end. If you can get some of them " on board" , it can be of enormous value in the end.  

Ali 

[Shep]

Is it possible to taper off the drugs after being on drugs for 10+ years?

 

Hi, Aries. Welcome to the forum from me, too.

 

I'm a long time survivor of antipsychotics, along with many other drugs taken for 30 years. I started out in the 80's on the older antipsychotics like Stelazine and then went through the atypicals. The last drug I came off was Seroquel.

 

I'm off everything now for a little over a year and I'm slowly healing.

 

I work full time, I went out to lunch with friends yesterday, and I enjoy the simple things in life like music and art. It's a slow recovery process, but taking things day by day and learning new coping skills are definitely possible, even after years of being on these drugs.

 

Will Hall is someone who was severely polydrugged for several years on many types of psych meds, including antipsychotics.  He was able to come off and recover and now he helps other people come off their meds and recover. In the beginning of this video, he talks about his own journey:

 

 

https://www.youtube.com/watch?v=O4bdG601k4k

 

 

 

My family and psychiatrist is not very supportive of me trying to get off the drugs. Any suggestions on how to make them change their minds?

 

 

Perhaps make a list of things you are doing to help yourself. Be very, very specific and tailor your non-drug coping skills for your symptoms. For example, the worst symptoms I still struggle with are dp/dr and insomnia. The best ways I found to deal with these symptoms are learning mindfulness, improving diet (eliminating sugar and caffeine, eating more protein including fish several times a week to get Omega 3, etc. ), and using distractions such as taking walks and watching movies on NetFlix to pass the time without obsessing over my symptoms.

 

So learning these kinds of coping skills will send a powerful message that you are taking control of your life and can help convince your family and psychiatrist that you are ready for this. Notice how Will Hall talks in that video - he's calm, under control, and he talks about dealing with issues off meds in more holistic ways. So your tone of voice, mannerisms, etc. will all effect how other people view you.

 

Here is a link to some great non-drug techniques:

 

Non-drug techniques to cope with emotional symptoms

 

What are your current symptoms? The more you can tell us about this, the better we can help you. How are you sleeping? Are you having problems with anger, anxiety, or other emotions?

[aries19835]

My current symptoms are delusions. My sleep has never been a problem except for when I was on generic abilify which kept me up at times. Maybe slightly down about life at times. I get delusional after sleep, because I don't think logically when sleeping, so that might carry over to when awaken. Therefore I get delusional. But then these drugs make me even more delusional when I try to get off of them. 

[Shep]

Thanks for this additional info, Aries.

 

Were delusions the reason you went on antipsychotics? Were you ever on any other type of medication that might have triggered delusions or did the delusions naturally occur?

[aries19835]

zyprexa and abilify both triggered delusion. When I was on drug initially I was only very slightly delusional, confused. I wasn't happy in college and studying is very stressful, I was kind of down on life. Then the hospital sent me to a psych ward where they prescribed 5mg abilify, which initially I felt I could have gotten off. I was stable taking 5mg abilify skipping a day for a whole month and I was stable. But then my mother forced me to take these pills. Eventually after being on abilify for 2 years, I wanted to stop taking it, so I stopped taking 5mg abilify all together which made me delusional. Then the hospital put me on zyprexa, and I was never stable on zyprexa, and after 7 years on 10mg zyprexa, I was very unstable delusional trying to get off zyprexa. Now I am recently on seroquel, which I am trying to taper off slower this time. When I get delusional I talk to televisions misinterpreting their messages, just whatever comes to my mind rather than listening to the whole story, I would listen to sentences and misinterpret the entire story.

[Shep]

From your opening post, you said you went from 200 mg down to 175 mg in two weeks, which is a 12.5% reduction. This is a bit faster than the 10% guideline. Since you're already experiencing delusions, I would hold and stabilize.

 

Do your delusions stop you from being able to work and to function?

[aries19835]

I am not experiencing delusions at the moment. The drop has been successful after a week. How do you cut the drug to 10% exactly? I cut 200 mg seroquel 8 times. to get to 175 mg. I am currently not working, so I can try to taper off and it won't affect me working.

[aries19835]

How do you cut the drug to 10% exactly? I cut 200 mg seroquel 8 times. to get to 175 mg.

[Shep]

I'm glad you aren't experiencing delusions now. This is a very good sign, and so is the fact that you are sleeping.

 

As you reduce the Seroquel further, you may feel more sedated. I am concerned that you may also have an uptick in delusions because as you lower the Seroquel under 150 mg, it stops working on dopamine and works on histamine.

 

So please carefully monitor your symptoms and go very slowly, especially during that phase of the withdrawal.

 

Here are two methods of getting a precise 10% reduction:

 

weighing with a digital scale

 

How to make a liquid from tablets or capsules

 

Please also place your medication history in your signature. This link will show you how:

 

Please put your Withdrawal History in Signature

 

Are you tapering from regular Seroquel or the extended release? It may be easier to taper from the smaller doses of Seroquel rather than using the 200 mg pill. Will your doctor work with you on this?

[aries19835]

does anyone have a dosage guideline for seroquel? Like at what point it is only on histamine, serotonin, and dopamine. At what dosage should the taper be really careful about?

[Shep]

Aries, this is from your signature:

 

seroquel 200mg 3 weeks, 175 mg 6 days, 150mg 5-29-16

 

Did you just make another cut today? This is not advised. You're coming off it way too fast.

 

With your history of coming on and off antipsychotics, your CNS may be too sensitive to handle this type of rapid taper. I would stay with the 175 mg dose for a full month to 6 weeks before making another cut.

 

I know what it's like to really want off these drugs, but with a history of delusions when you tried to quit these drugs before, it's really best to go slowly and carefully.

[Shep]

does anyone have a dosage guideline for seroquel? Like at what point it is only on histamine, serotonin, and dopamine. At what dosage should the taper be really careful about?

 

 

This is an informative (and humorous) article that's been floating around the various web forums for awhile about the varying doses:

 

http://thelastpsychiatrist.com/2007/07/the_most_important_article_on.html

 

 

I would still go slowly and carefully with your taper, regardless of where you're at with any of the doses. Once your CNS is destabilized, you run the risk of paradoxical reactions at any dose. You already are moving away from the dopamine action, so even more reason to proceed cautiously.

[Altostrata]

Welcome, aries.

 

Please read this carefully Tips for tapering off Seroquel (quetiapine) (thank you, SquirrellyGirl).

 

It sounds like withdrawal triggers para-psychotic symptoms, such as delusions, in you. It's very important that you taper slowly and carefully, so as not to trigger these symptoms -- or they could land you in the hospital and back on the drug treadmill again.

 

Please keep daily notes on paper about your symptoms, when you take your drugs, and their dosages. This will help determine what to do next in your taper.

 

What is your relationship with your psychiatrist like? Do you live with your parents?

[aries19835]

My psychiatrist is very stubborn about giving me a lower dosage. And I do live with my parents which is the problem. I have no where else to go if I were to taper my medicine without their approval. They can easily send me back to the hospital again whenever they like.

[Shep]

That's hard when you don't have control over your own life. But you're at a point now where you may very well be able to take control.

 

By going very slowly with your taper and improving your non-drug coping skills, you will have more control over what happens. This is your best bet for staying out of the hospital. Please re-read what Alto wrote about withdrawal triggering para-psychotic symptoms. This is very important. 

 

Do you have a digital scale or the equipment needed for a liquid taper? I provided links in my post above. I fear you are really rushing this taper and it may very well backfire and you'll end up right back in the hospital and on more drugs. And it doesn't have to be that way. 

 

You can do the taper with the 200 mg pills, but I would definitely use a scale or a liquid taper.  

 

Please take some time to read over this section on non-drug ways of handling symptoms:

 

Non-drug techniques to cope with emotional symptoms

 

A lot of people who come off antipsychotics find mindfulness, yoga, changes in diet, etc. to be great ways of not only handling withdrawal, but life in general. And getting involved in these types of activities are likely to show your family and your doctor that you are serious about handling your life off of drugs. 

 

Please keep us updated. 

[scallywag]

aries: When you've got the time & focus for more reading, you might be interested in another recent member pulled up a buried thread in the Symptoms & self-care forum:

Antipsychotic survivors- Interested in your stories.

 

[JanCarol]

Aries, how are you going? What have you decided to do?

 

Sometimes, rarely, you can get a good psychiatrist who will help you taper.  But that is like a pig with wings.  IF you had such a psychiatrist, Seroquel comes in all kinds of sizes from 25 mg on up, and he could prescribe sizes that would help your tapering.  

 

With your parents, it could be more important to bring them on board so that they can help you with your tapers.  I think the Harrow study as described by Robert Whitaker is a good start.  I'll do another post where I show you 4 slides from one of Whitaker's talks, that may help you explain it to your parents.

 

Are you an adult?  It's very common for young humans to have a "spiritual emergency" around university age as we try our independance and wings and try to stand on our own two feet.  That is what I think happened to you - but the drugs have delayed your processing of this information that your body & brain were trying to teach you.

 

Can you please put dates in your signature, so that we know exactly when you have made changes?

 

Others have noted here from your signature, that we think you are cutting too fast.

 

I'll be back in a mo.

[JanCarol]

Okay, here are 4 slides from a talk by Robert Whitaker.  I'm sorry I don't remember which one, but I was so excited about these slides that I took pictures of it.  He's very good about making his slides public, as he's trying to raise awareness about what he sees as an epidemic of illness exacerbated by these drugs (it is not quite correct to call them "medicine.")

 

OK - in the first slide, he tells us that it has been known for DECADES that the drugs CAUSE the very symptoms they are trying to relieve.   This quote is from 2011, but I remember him talking about similar quotes from the 1960's!  This quote is clearer and more succinct:

 

OKAY in this slide, the Harrow study indicates that those who go on neuroleptic drugs (mistakenly called "anti-psychotics") have greater psychotic symptoms in the long term than those who do not:

 

 

In this slide, also Harrow, you can see a graph that the people who "recover" - go back to work, do well in life - while on the drugs is only 5%, while people who are not on the drugs fare much better.  You will see that, at the 7.5 year mark, the people on neuroleptics seem to do somewhat better - but that does not last, while the ones off the drugs get better and better over time:

 

 

And this is another Harrow slide which shows the recovery in a gradient, of "how well" the patient is doing, both on and off the drugs:

 

 

You can see, that of the ones who stay on the drug, only 5% experience any recovery at all, while off the drugs, more like 40% can recover.

 

I've known people in that 5%, on the drugs, but each of them is slipping and becoming more difficult to reach.  

 

Unfortunately, there are no studies which indicate the difference between cold turkey quitting and long slow tapering - we only have anecdotal evidence of people on this website and others in CEPUK, MindFreedom, and Icarus.  Additionally it is important to note that when a study talks about "relapse" they often have messed around with people's drugs in order to produce this "relapse."  This is where the myth of "drugs for life" comes from.

 

Example:  John and Jane sign up to the study.  John is in group A, Jane is in Group B.  They are both medicated, but John is on a different medicine to Jane.  Jane is on the medicine they are testing for the study.  They rip John off of the drug he is currently on, inducing withdrawal, then put him on a new drug.  He kind of stabilizes on the new drug, but when they "discontinue" that drug, he goes into severe withdrawal.  This is noted in the study as a "relapse."  But you see how that "relapse" is just an increase in symptoms caused by messing with the drugs?

 

PLEASE DO NOT QUIT YOUR DRUGS!  (sorry, I had to yell that, it's important!)  I am saying that if you gently, safely taper off, you may be able to experience a free and normal life - in time.  But it takes time, and support, and disclipline, and patience.  PLEASE stay on your current dose, and please add dates to your signature so that we know when you have made these changes in relation to now.

 

I hope these slides help you in your discussion with your parents.  Please have them get a copy of Robert Whitaker's "Anatomy of an Epidemic" - it is the clearest case for understanding what you are experiencing now.

 

And please be patient.  This takes time, and it gets better long before you are done tapering.  

 

There are many who have done this before you.  It does get better.

[aries19835]

going down to 125 mg today.

[SquirrellyGirl]

Ok, that's more than 10%.  Sure you want to go that big?  Be prepared to up-dose if you run a-foul!

 

SG

[ang]

Hi Aries from another Aries,    we are stubborn rams, arent we?     I was on 400mg serouquel,     but that was because I hadnt found this site, and went off everything too quickly,  and the rebound effect?   A massive drug cocktail.              

 

I still hadnt found this site, when I again attempted off the massive drug cocktail, again too quickly.     

 

Anyhow, you are only on one drug, go slowly.             I am now down to 30mg seroquel,  and I have learnt now,  even that small dose change, has a BIG EFFECT.    I only have this one to go now.  

 

If you are on 125mg.    Get pills if you can now,  100mg, and 25 mg,  and 50mg.                                         Please, if you have tablets to make up the 125mg, its easy,  just stick to that for at least a month.           You are now at the dosages where seroquel is more of a sedative, the lower you go, the more it seems to sedate.  My experience anyway.    

Are you in Australia or USA?

 

If you ever want to chat just pm me.      I have had the delusions, the television talking personally to me, all of that.                  You are young, so do it right, do it slow, and never ever have to meet the drug devil again.                  

[aries19835]

I can't get 100 mg, 25 mg, and 50mg, I have had to cut 200 mg down to 125 using a pill splitter. My psychiatrist won't prescribe 25mg, because he won't change the dosage without supervisor approval. Complete bullsh*t. Basically what I do is cut 200mg, 1/2 cut, 1/4 cut, 1/8 cut down to 100 and 25 mg.

[Shep]

I hear what you're saying, aries. Getting most psychiatrists to help with an antipsychotic taper is not easy. They are more likely to help you off stimulants or benzos, but AP's are different, especially if you have a history of delusions, hallucinations, etc. I was completely on my own coming off these drugs.

 

But as you get down to the lower doses, it's going to be very difficult to use a pill cutter on a 200 mg pill. As Ang said, the small doses can have a big effect. That was my experience, too.

 

I stopped taking Seroquel at 6.25 mg, but I really should have gone down to at least 3.125 mg.  I had a lot of GI problems after coming off. There were some episodes of rebound psychosis, but it wasn't too bad at that low a dose. I just felt like I had more "control" over my thoughts so even if there were some residual voices and visuals, I could handle my emotions and simply let them pass by without me reacting. That's key to not getting re-medicated. 

 

Please keep a daily log of your symptoms such as sleep so you can gage your progress. 

 

There are ways of using a scale or using liquid titration that might work better for you after your reach the point where it's impossible to split the 200 mg pills anymore:

 

weighing with a digital scale

 

How to make a liquid from tablets or capsules

 

You're making such great progress. Best to go slow and reach that drug free life you're working so hard for. 

[aries19835]

Hi shep you were still experiencing psychosis on low dosage? I thought psychosis is only a problem when you are over 150mg. what kind of psychosis were you experiencing? I guess that the receptor site theory is not completely all encompassing then.

[Shep]

Hi, Aries. Yes, I've had problems with residual hallucinations. I had very few voices, which I'm grateful for because I have a harder time handling those. 

 

But the visual problems were quite bad for awhile. For example, I was walking to the bank to make a deposit for work and I saw what looked to be a body lying on the ground, but it was really distorted without a face - it looked like a mask. I had a few visuals that were similar to this off and on. That was when I was down to 50 mg Seroquel, so it was well within the histamine level and below the dopamine level. These are difficult symptoms, but mindfulness really helped me deal with it - I simply let the visuals pass by. 

 

It got mixed in with my benzo withdrawal (I didn't know not to withdraw more than one drug at a time). So I had a ton of visual problems from a withdrawal symptom called derealization. 

 

One thing I will caution you about is many of us have psychotic symptoms that don't appear sometimes for months after coming completely off meds. That's how many of us get re-hospitalized and placed back on meds. The best way to avoid this is to go no faster than 10% and make note of your symptoms. Let your mind and body guide you. Your mind/body knows more than doctors and will help see you through this. 

 

Even though I'm 13 months off meds, one of my lingering symptoms is insomnia.  Chronic, severe insomnia can also cause hallucinations. And the faster you come off antipsychotics, the more likely you are to suffer from this. 

 

Again, some symptoms may not appear until you're well off the medication. So the slow taper off antipsychotics is really the best way to go. Even with the symptoms and the struggles I still have, the peace of mind lets me know it was well worth getting off these drugs. 

 

But please come off as safely as possible so you can finally be free forever. It's worth it. 

 

 

 

 

[ang]

Thanks so much Shep, you are helping me also.  I have horrible visuals, as I wake up, and sometimes if I wake up in the night.   Clear, clear images, that are not there.  Or images of simple things, in my mind, as I wake up, and they cause me instant panic.    I have terrible trouble motivating,  like I just cant do simple things,  as it is just a panic, to even think of damn making the bed.  How absurd!

 

At the present time, I will stick to the 10% reduction,  I can get 25mg pills.   I also get compounded pills, but they come in sets of 100. Expensive,  but I have found I need it to be very accurate dosages.       I will get 6mg ones next,  So I have presently remaining 18mgs,  15mgs,  and with a batch of 6mgs,  and the 25mg pills hopefully will see me through.

 

Interesting you said not to jump at 6mg,  Thankyou for that advice.  I think I will need 2mg compounded pills later down the track. Thanks again Shep.

[SquirrellyGirl]

Ang, I shared this with Shelbytrev yesterday but I think it pertains to you, too:

 

From http://survivinganti...rawal-syndrome/

 

Even among people suffering the most severe antidepressant withdrawal syndrome, repopulation of serotonin receptors probably occurs long before symptoms disappear. However, while the serotonin system is repairing itself, an imbalance occurs in the autonomic nervous system. The locus coeruleus "fight or flight" center becomes disinhibited and the glutamatergic system becomes more active than normal. This is called disinhibition of the alerting system, and it generates symptoms that are awful: panic, anxiety, sleeplessness, and dreadful imagery among them.

 

SG