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lucyinthesky

lucyinthesky: Olanzapine/Seroquel & insomnia

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lucyinthesky

Hi there,


I am hoping to be able to leverage the wisdom of this community to shed some light into my personal situation and help decide possible courses of action. The only people I can speak to in real life about this are my well-meaning family/friends (who think Doctors have all the answers) and my psychiatrist/doctor/psychologist who only respond with medication-related suggestions. Up until this point I have been relatively ill-informed of the pitfalls of withdrawing from psychiatric drugs and I’ve clearly made some big errors along the way.

 

However, my goal (like many I’m sure) is to be drug-free but of course this isn’t something my psychiatrist supports. I am sorry in advance this is such an essay. [And apologies for all bold - my javascript bold function is broken!]

 

About me:

I’m a 30 year old British female living in Amsterdam, with a full-time job in Marketing.


Where it all began:

Just over 5 years ago, at age 25, I experienced a very intense mania with extreme psychosis and was hospitalised. The psychosis was triggered by a melange of stress, diet, lack of sleep and smoking a joint (which I used to do regularly in my teens and 20s with no ill-effects). In the psychiatric ward I was given Olanzapine at 7.5mg dose and gradually over a few weeks, the psychotic symptoms disappeared, and I was discharged. My doctor gave me the loose diagnosis as either Schizophrenia or Bipolar I, but was leaning towards Bipolar--so that’s what I’ve stuck with (but to be honest I’m not sure if it’s correct).

 

After my discharge, I reduced the Olanzapine from 7mg to 5mg and then to 2.5mg over the next few months, and stopped taking Olanzapine completely since the side effects of weight gain and libido loss were not tolerable (with my Doctor’s blessing). For a few months, all was well, until I started getting insomnia, characterised by heart palpitations, feeling of mini panic attacks when trying to fall asleep (and therefore not being able to drift to sleep), and very poor quality sleep when I did manage to sleep. My psych recommended I try taking Seroquel instead, and started me off on 700mg per night.

 

The (Good) Seroquel Years

Over the next 4 years, I led a perfectly normal and healthy life--even moved to a new country and changed my job--taking Seroquel with minimal side effects. I managed to reduce the Seroquel from 700mg down to 100mg over 2-3 years, and was feeling better and better the lower the dose (with much less sedation and grogginess the lower the dose). I also switched to a vegan diet & cut down on booze and partying in this time which also helped a lot! Finally, I went from 100mg to 50mg around May 2017, and still felt no adverse affects (only positive improvements). My only concern was the niggling fear that I had become dependent on the Seroquel for sleep.

 

The Disruption - coming off Seroquel cold turkey and switching to Olanzapine

In August 2017, completely out of the blue, I suddenly stopped being able to sleep. What then followed was a few months of terrible broken sleep and heavy reliance on Zopiclone (alternating nights) to be able to keep up appearances at work, do my job and maintain normality. My therapist at the time suggested I increase the dose of Seroquel to counter the insomnia, so in October, I moved back up to 100mg Seroquel (occasionally 150mg). This worked a treat for the insomnia, however I suddenly started experiencing very regular involuntary muscle movements (more than a twitch, less than a jerk, around 2x per minute in all different areas of my body), and became very worried this was Tardive Dyskinesia. My Doctor (I didn’t have a psychiatrist at this point) told me I should stop the Seroquel immediately, since this was a serious side effect. I quickly got referred to a psychiatrist, who put me on Olanzapine 5mg instead. The twitching stopped, the sleep was fine, but I hated being on Olanzapine (heavily sedated/low mood/very withdrawn/binge eating/weight gain etc.).

 

Recent struggles with Olanzapine

After 2 months on 5mg Olanzapine and its shi*tty side effects, I halved the dose to 2.5mg and stayed on that for 6 weeks with no WD, but annoyingly only a very light reduction in the side effects. Complaining to my psychiatrist, she suggested I try the antipsychotic Abilify (10mg) instead, and told me to switch directly (a hard stop of Olanzapine!). Abilify does not block histamine receptor like Olanzapine and Seroquel, and it did nothing for my insomnia. My sleep started to deteriorate the second I stopped taking Olanzapine, and as soon as it was fully out of my system my insomnia returned with a vengeance - I was not able to sleep without Zopiclone, and even with Zopiclone I would only get 4 hours sleep then get woken up by loud, piercing tinnitus and moderate anxiety. I managed to live like this for only 10 nights, some nights getting no sleep at all, other nights getting less than 4 hours with Zopiclone. Annoyingly all the Olanzapine side effects stopped and I felt great, except for the crippling insomnia which stopped me functioning. I gave in and reluctantly switched back to Olanzapine, which almost brings us to the present moment.

 

Where I'm at Today

Ever since going back on the Olanzapine (2.5mg), my sleep problems haven’t really gone away: I can get off to sleep fine, but keep getting woken up by the piercing tinnitus and ‘high energy’ around 4am; often I can’t get back to sleep. I’ve tried increasing the Olanzapine back up to 5mg and that isn’t helping much. Before anyone goes there, my sleep hygeine is pretty good. I've also stopped drinking alcohol completely and have a regular bedtime of 10pm.

 

Now I am starting to panic that not even Olanzapine can help me live a normal life.

 

I am plagued by the fear that I am dependent on Olanzapine to get any sleep and that beneath it lies an incurable insomnia. Regardless, I cannot fathom living my life long-term on Olanzapine and I need an escape plan to give me hope (even if I’m not ready to come off it yet).

 

Where I could use some guidance:

 

>> I am not sure if a lot of what I am experiencing with regards to the insomnia is related to withdrawal, even though I am still on the Olanzapine - is that possible? OR is it more likely that my insomnia is the beginnings of psychosis/schizophrenia and therefore I need antipsychotics to not be psychotic.

 

>> Clearly, I’ve messed up my system somehow with all the medication switching and dose changes (none of the reductions have been that gradual). Is there a good strategy to get me back on track?

>> Has anyone had any luck with undergoing biochemical nutrient therapy to help support their taper?  This is something I'm looking into.

>> (Not really a question) I just find the prospect of tapering and inevitably re-living through insomnia for a sustained period of time incredibly impossible, especially with a full-time job. I just don’t know how anyone does it... I can barely last a week - and I also have the threat of having another psychosis &hospitalisation being induced by insomnia.

 

I realise my situation is not that extreme at the moment, but I am already losing hope and am in a pretty dark place with depressive thoughts about my prospects.


I am not sure how I will manage mentally and physically if things get worse (which I suspect they inevitably will). Thank you in advance for reading this far.

 

Edited by ChessieCat
removed bolding

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lucyinthesky

Does anyone experiencing this 'cortisol spike' in the early morning experience tinnitus too?

 

I have very low-level tinnitus most of the time (or I've adjusted well to it!), but around 4am, I wake up with raging tinnitus and high energy. Less anxiety/panic these days, just really alert and wired. 
 

Intrigued if tinnitus is linked for others to see if it's my Cortisol or something else...

 

Thanks!

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lucyinthesky

Does anyone know why my post from Monday still says pending approval? Is it too long?

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Gridley

Lucy,

 

The site is staffed only by volunteers, most of whom are dealing with withdrawal, and sometimes there is a delay in responding.  

 

I've had low-level tinnitus also, off and on.  I also used to experience cortisol spikes, though less so now.  Both are very common withdrawal symptoms.  I don't know of any particular link between the two, except that both stem from withdrawal.

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Glosmom

Hi Lucy,

Welcome to the site! First off, I wish you much peace and sleep throughout your journey. I am helping my 22 year old daughter wean off risperidone (antipsychotic) and all i can say is, any small change in her dosing makes a huge difference.  So it seems like you have made a lot of changes in meds and dosing since November of 2017. That is only 5 months ago.  I can only imagine that your nervous system is in havoc.  I am not a doctor and this is not medical advise but, i think slowing down, holding at a dose for many months (if not longer) will probably help you.  Since I am a mom, i am not a young spring chicken but there are many nights in my own life that i don't sleep well. There are many nights in my daughter, Glo's life where she doesn't sleep well.  Sleep is very important but sometimes when we focus on it so much, we make it worse. I used to work nights back in my 30s. It was at that time that i learned that i needed to accept that i had a disrupted sleep schedule and not get mad at it.  Accept that i acually could survive on 2 or 4 hours of sleep as long as i didn't focus on it. I was kind to myself and didn't ask too much of myself during the 3 years i worked nights.  That time period helped me now as i face many nights of poor sleep due to the female aging process :)   I don't sleep when Glo doesn't sleep and Glo does struggle with insomnia as well,  when her dose is decreased, switched or moved. So Glo and i don't get sleep together these days :)  It takes weeks for her to get back to regular sleep.  Be kind to yourself. I hope that you can find a steady pattern and ride out this rough wave and get to the other side as soon as your body is ready.  Take care!

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BobJoe

I also have moderate tinnitus and insomnia from tapering Olanzapine.


Do you have any amalgams?
I would suggest to do a hair test for heavy metal toxicity. The easiest way is to join Andy Cutler Chelation facebook group and they will guide you.

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Gridley

Lucy,

 

I am sending you some links that I hope will be helpful to you.

 

At Surviving Antidepressants, it is recommended that a person taper by no more than 10% of their current dose with at least a four week hold in-between decreases.  The 10% taper recommendation is a harm reduction approach to going off psychiatric drugs.  Some people may have to taper at a more conservative rate as they are sensitive to even the smallest drops.
  
 
 
 
With all the dose changes and drug changes you have undergone, your nervous system is disregulated, and withdrawal is the all-too-common result.  It is certainly possible that the insomnia is due towithdrawal even though you are still on the Olanzapine.  That to me is the more likely scenario.
 
Please read these two posts on the question of withdrawal or relapse.
 
 
Insomnia is one of the most common WD symptoms.  To help you understand what you are experiencing, here is some information on withdrawal:
 
 

 

When we take medications, the CNS (central nervous system) responds by making changes over the months and years we take the drug(s). When the medication is discontinued, the CNS has to undo all the changes it made. Rebuilding the neurotransmitter production and reactivating the receptor and transporter cells takes time -- during that rebuilding process symptoms occur.  
 
Please be aware that sometime withdrawal symptoms don't appear immediately after a too-fast taper.
 
 
Here is some information on sleep problems.
 
 

As a plan of action, I suggest you make no changes for several months and hold.  ChessieCat, one of our moderators, wrote: "There is no easy and/or quick fix.  It is going to take time.  We are so used to things being instant.  And we also want to feel/know that we are doing something.  Holding steady is doing something, even though it doesn't seem like it."  

 

apace, another of our moderators, wrote, 

 
"Over time the brain will return to homeostasis and healing will occur.  How long that will take  and what that means when taking a healing brain along with the passage of time and mixing it all up is anyone's guess.  The success stories, while they did take more time (in most cases) than any of us would like, seem to indicate that there is substantial healing and a lot of people come out "on the other side" feeling better about life and themselves than they did either before or during the use of the drugs.

 

It would be misleading and, frankly, unethical for me to tell you "don't worry -- you'll be fine in x months."  The reality, as you already know, is frequently different.  But, at the end of the day, the people who have been doing this for a long time tell us that healing will happen and we have no reason to doubt that.  The Success Stories bear that out as well and they also indicate that even those among us who are really sick and dealing with hellacious symptoms will, in the long run, see healing and recovery."
 
Have you tried melatonin?  It has helped me.
 
 
 While it is often a first response to stress to take a B-Complex, in withdrawal it can be overstimulating.
 
We don't recommend a lot of supplements on SA, as many members report being sensitive to them due to our over-reactive nervous systems, but two supplements that we do recommend are magnesium and omega 3 (fish oil). Many people find these to be calming to the nervous system. 

 

 

 

Please research all supplements first and only add in one at a time and at a low dose in case you do experience problems.
 
Many members have found the techniques in the following two links helpful in coping with withdrawal.  
This is your introduction topic -- the place for you to ask questions, record symptoms, share your progress, and connect with other members of the SA community.  I hope you'll find the information
in the SA forums helpful for your situation. I'm sorry that you are in the position that you need the information, but I am glad that you found us.
 
 
 
 
 
 
 

 
 
 
 
 
 
 
 

 

 

 

 
 
 

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lucyinthesky
On 3/29/2018 at 4:21 PM, Gridley said:

Lucy,

 

I am sending you some links that I hope will be helpful to you.

 
 
11

 

@Gridley, thanks for all of the links and info. I will for sure work my way through them. I think you and @Glosmom may be right - I should hold my current dose (5mg Olanzapine) for a few months to try and let my nervous system settle. Then begin a 10% taper. 

 

I have tried melatonin but it interacts in a very weird way with my medication - I get very trippy and hallucinogenic symptoms on it. WIll try again when I'm on a lower dose of Olanzapine.

 

Wish I'd known of this info 6 months ago. I would have ignored the advice of medical professionals to quit Seroquel cold turkey (even if I was going on another antipsychotic). :( In hindsight, I think most of my issues have been withdrawal due to cutting down too quickly. 

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lucyinthesky

Hey again,

 

After my unsuccessful 10 day attempt to switch from Olanzapine to Abilify (described above), I tried to reinstate Olanzapine at my previous dose 2.5mg. However, I had really bad insomnia = struggling to fall asleep and waking up with aggressive energy around 4am, not being able to get back to sleep. The current hypothesis is that this insomnia is a withdrawal symptom from stopping Olanzapine cold turkey (even if only for 10 days, and even if replaced by another antipsychotic).

 

So, I've increased Olanzapine to a higher dose of 5mg. The insomnia is much better: I am just waking up a few times in the night but falling back to sleep immediately.

 

However, aside from this one positive outcome, the 5mg is clearly too high a dose for me. The sedation is almost too much; waking up in the morning is near impossible; I am late to work repeatedly; I am groggy throughout the day; feel withdrawn/low mood and have zero motivation. On my days off, I can happily sleep for 14-16 hours and barely have any appetite to do anything else. I had these exact symptoms before when I started Olanzapine @ 5mg Olanzapine, and they improved significantly when I dropped the dose to 2.5mg, so I definitely think these are side effects of Olanzapine rather than Withdrawal.

 

On top of the sedation/depression side effects described above, I now have a lot of occasions where my fingers and limbs tingle and go numb. Every single night I notice that either my whole hand or little finger goes totally numb, during the day I have a lot of pins and needles. I never noticed this before when on Olanzapine, so perhaps this is linked to withdrawal rather than being a side effect?

 

The original plan was to hold at my current dose for a few months before attempting any kind of taper to let my CNS stablise, but because the 5mg is so brutal on my system, I am hoping I can quickly reduce to 4mg or even 3mg and hold there instead. I was on 2.5mg for some months with no issues previously. Is this advisable? 

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ChessieCat

The effect of psychiatric drugs is cumulative.  What previously worked may not work the same way next time.  It sounds like you have now increased too much.  If you have only been on 5mg for 1 or 2 days you could reduce back down to a lesser amount straight away.

 

It takes about 4 days for a dose change to reach a steady level in the blood and a bit longer for it to register in the brain.

 

Please add ALL the dates and doses to your signature so we can see them at a glance.  Thank you. Account Settings – Create or Edit a signature

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lucyinthesky

Thanks @ChessieCat, signature is updated. Unfortunately, it's been more than a few days. 

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Lloyd59

Hi Lucyinthesky , i can understand how your feeling with Zyprexa Withdrawals. I tapered down from 15mg Wafers to zero over a 6wk period. Not having the know how of what to expect only now from going online to forums like this did i realize how terrible Zyprexa Withdrawals can be. Im almost 4 an a halve wks into my Withdrawals and im having a hard time dealing with the symptoms. I have alot of aches an pains particularly in my legs some headaches an terrible insomnia and some Dizzy spells. Im determined to see it thru and i can't turn back now.. ive been taking Melatonin for past couple wks with little effect as yet. Im exhausted and just hope i can stay positive. My mind since the day i went off Zyprexa is very clear and i think this helps me fight thru it. Anyway i wish you all the very best in your struggle and im sure you'll get free off Zyprexa in time. Take care  Lloyd59  from Oz 

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lucyinthesky
On 4/20/2018 at 9:18 PM, Lloyd59 said:

Hi Lucyinthesky , i can understand how your feeling with Zyprexa Withdrawals. I tapered down from 15mg Wafers to zero over a 6wk period. Not having the know how of what to expect only now from going online to forums like this did i realize how terrible Zyprexa Withdrawals can be. Im almost 4 an a halve wks into my Withdrawals and im having a hard time dealing with the symptoms. I have alot of aches an pains particularly in my legs some headaches an terrible insomnia and some Dizzy spells. Im determined to see it thru and i can't turn back now.. ive been taking Melatonin for past couple wks with little effect as yet. Im exhausted and just hope i can stay positive. My mind since the day i went off Zyprexa is very clear and i think this helps me fight thru it. Anyway i wish you all the very best in your struggle and im sure you'll get free off Zyprexa in time. Take care  Lloyd59  from Oz 

 

Hi Lloyd. I think I've seen you on a different forum. I'm sorry you are going through what sounds like a terrible withdrawal. I can only imagine. Are you managing to get some sleep? Thank you for the words of support :)

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Lloyd59

Hi Lucyinthesky, just starting my 5wk of Zyprexa Withdrawals today and stil finding it tuff but will keep on going and hopefully get on top of things soon. Sounds like uve gota get to 3mths before theres any change in Symptoms. As far as sleep goes my Insomnia hasn't improved much. Ive been taking Melatonin for past 2wks and i got bout 4hrs sleep last night which is the most ive had in 5wks. Its only been in the last 3 or 4 nights that ive had any real sleep anything from 1 - 4 hrs per night. I might nod off just before midnight for an hr or two then stay awake till early morning where i might drop off for another hr or two. I just hope my sleep will improve as it wares you down and can't be doing any good for my physical health either. I wish you all the very best. ..  Lloyd  

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lucyinthesky

Update:

 

I am really struggling with side effects of being on Olanzapine (5mg). I have no motivation to do anything, even the smallest task feels like such a struggle and I am constantly having to "convince" myself to do things, I have very little enjoyment of activities and do not feel like myself. My thoughts often turn to ending my life. I know this is just a side effect of the medication as I never felt like this before I took Olanzapine, but I can't see how I will survive more months of this; let alone the 1-2 years it will take me to taper off with a gradual 10% reduction (as per my current plan). 

 

I have a psychiatrist appointment tomorrow and I know she will suggest switching back to Seroquel based on the above. To be fair, I never experienced this kind of low mood/depression on Seroquel, I lived a very normal and happy life. (The reason why I stopped Seroquel was due to muscle twitches, but my psychiatrist believes I only had muscle twitches due to reducing the dosage too quickly). So, I am wondering if I should switch to Seroquel and then plan to taper off that gradually instead, using the 10% method?

 

If I switch to Seroquel, I will stop taking Olanzapine 'cold turkey', but since they are both antipsychotics affecting the similar receptors in the brain, I assume I won't get the same severity of withdrawal symptoms as if I completely stopped taking all medication cold turkey. I appreciate that it will be disruptive to my nervous system in the short term, but I am wondering if this will give me a better quality of life overall.

 

Appreciate any input. My appointment is tomorrow... thank you!

 

 

 

 

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mammaP

Hi Lucy, how did you get on with the psychiatrist? Did you switch back to seroquel?   I noticed that you have taken zopiclone on occasion. It can be addictive very quickly and will also cause interdose symptoms. It is also harder to get back into a sleep routine when drugs have been used for such a long time.  

 

Let us know how your appointment went and what you are taking now.  If you quote this post I will get a notification that you have replied. If you don't I will still get a notification but it will be along with a million others and I can miss it! 

 

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lucyinthesky
1 hour ago, mammaP said:

Hi Lucy, how did you get on with the psychiatrist? Did you switch back to seroquel?   I noticed that you have taken zopiclone on occasion. It can be addictive very quickly and will also cause interdose symptoms. It is also harder to get back into a sleep routine when drugs have been used for such a long time.  

 

Let us know how your appointment went and what you are taking now.  If you quote this post I will get a notification that you have replied. If you don't I will still get a notification but it will be along with a million others and I can miss it! 

 

 

Hello MammaP! Thanks so much for replying :)

 

My psych indeed thinks that I should switch to Seroquel to have a better quality of life, and she said that the Seroquel will "take over" from the Olanzapine so any withdrawal symptoms should be minimal and very short term. The plan is to switch over a two-week period and cross-taper the two medications to minimise and withdrawal from one to the other.

 

However, I'm not going to start the transition yet; I'm going to stay on Olanzapine for another 3 weeks. I'm moving house and I don't want any additional disruptions.

 

Side note: I am quite lucky that my psychiatrist is supportive of me wanting to come off medication entirely and I even told her about how I plan to make a liquid to taper down gradually. She seemed bemused (she's never had a patient taper off antipsychotics before) but supportive. It really made a lot of difference to my mood, I feel less like it's me battling the world in this struggle.

 

I barely touch Zoplicone anymore. I have no need with Olanzapine; it knocks me out. The only time I'll take half a Zopiclone tablet is if I've stayed up way past my regular bedtime (like 2/3am) and/or been drinking alcohol. And that happens less than once a month these days since my social life has taken a pretty big hit!

 

 

 

 

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PoetJester

Hi LucyintheSky

 

i had the same motivation problems on olanzapine.  the last 8 years on it were really bad.  i can remember where i would be watching tv and if there was something on the television that i didn't want to watch, that even pressing a button on the remote to change the channel seemed like too much.  it was ridiculous.  it wasnt' that way the first few years on the drug, but by the end it was.  

 

 

Poetjester

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Lloyd59

Hi Lucyinthesky, i hope your plans to go on Seroquel n stay on Olanzipine for at least the short term is a good one. Best wishes for the future an take care.  Lloyd from Oz  

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lucyinthesky
34 minutes ago, Lloyd59 said:

Hi Lucyinthesky, i hope your plans to go on Seroquel n stay on Olanzipine for at least the short term is a good one. Best wishes for the future an take care.  Lloyd from Oz  

 

Hi Lloyd. Thanks for your support! How are you doing with your withdrawal now? I hope you are finding some windows of recovery.

 

Update: I am going through a really bad phase, mentally and physically, at the moment and really do I worry because I haven't even started trying to taper yet!!

 

I am suddenly experiencing very bad insomnia (had two hours sleep last night), numbness, muscle twitching (it's back!!! :(), I am not sure if this is related to medication or not, but my knee is inexplicably swollen and really painful to the touch (I haven't knocked it or injured it), which also means I can't do yoga or run which was giving me some consistency and sanity previously. I hope it is not an autoimmune disease. Whatever it is, It really feels like I'm unraveling, mentally and physically.

I think the few friends that I talk to openly about it must be sick of me by now as I hardly have any good news. I don't want to be that draining person.  How do people stay positive and upbeat?

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Lloyd59

Hi Lucyinthesky, thank you for your reply. Im into my 6th wk of Withdrawals an still struggling with Aches an Pains an some Insomnia an some Dizzy Spells. I think the Melatonin starting to work abit. Last few nights ive had approx 4-6 hrs each night which is a big improvement from having endless nights without any sleep. Im determined to push thru my Spasms Aches an Pains in both legs. My mind is still very clear and is keeping me going. I know you can beat your struggle aswell im right behind you. Anytime you need a chat im here. Wishing you all the very best and stay strong you'll get there mate.   Lloyd from Oz 😊

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lucyinthesky
On 5/26/2018 at 11:10 AM, lucyinthesky said:

 

Hello!

i am currently switching from zyprexa to seroquel, the reason being that the side effects of zyprexa are too detrimental to the quality of my life (even if i’m tapering off anti-psychotics, It will still take 1-2 years). I’ve been on seroquel before with no side effects and my plan, once I’ve made the switch is to begin a gradual taper off Seroquel. 

 

Olanzapine affects more receptors than Seroquel, but the key one for me, histamine receptor as it affects sleep is fairly similar in effects- meaning sleep is unlikely to be disrupted. By contrast, when I tried to switch from olanzapine to ability (another antipsychotic but it doesn’t target histamine receptor), I had chronic insomnia and point blank could not sleep. 

 

Indeed I’m mid-way through the transition to seroquel and my sleep has been fine. The only other effects I’ve noticed are my depression lifting, more energy, less sedation—basically a reduction in all the awful effects of olanzapine. 

 

I will update once olanzapine is fully out of my system. 

 

However if the only reason you’re looking to make the switch is because of tapering method, I also reinforce the fact that you can make a suspension liquid from olanzapine fine— even th regular kiind. 

 

 

 

Guys,


By way of an update, I am afraid to report that I may have spoken too soon regarding my "successful so far" switch from Zyprexa to Seroquel.    As soon as I tried to go below 2.5mg Zyprexa (while increasing from 75mg to 100mg Seroquel), I have been unable to sleep (even though the Seroquel makes me extremely groggy and sleepy, my brain just isn't able to get into sleep mode). I feel like I'm hitting a brick wall.  I'm not sure what my next move will be -- just wanted to update you that it certainly isn't as easy as I thought. Zyprexa addiction is the worst. :(

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Spideygsm

lucyinthesky (beautiful name)

 

Sorry. Kinda long. Trying to give you info and background. 

 

My last dose of Zyprexa was 3/4/18. I had to do a quick taper (3 months) from 30mg do to very bad side effects. I was on Zyprexa 15 years. My body built up a tolerance and the Doctor kept upping my dose. I did not take Zyprexa for sleep. It actually had the opposite effect. If I feel something in my body, my mind attacks that feeling and I can’t sleep. I took Zyprexa for it’s approved use. Prior to taking Zyprexa I did have moderate insomnia and anxiety (insomnia can be caused by depression and anxiety). While on Zyprexa, I actually had to take Ambien because Zyprexa actually caused worse insomnia.

 

To your very good post. When I started my Zyprexa taper, I had about every withdrawal symptom you read about. The worst were severe insomnia and anxiety. My Doctor put me on Ambien and Valium. Didn’t work so I stopped them. For me, I don’t think there’s anything I could have taken to stop the withdrawals. The withdrawals are caused by your brain no longer having the drug controlling your natural brain function. It takes time for your brain to repair itself. That’s why it makes all the sense to taper at very small drops and over a long period of time. Essentially, the brain is allowed to adjust itself slowly and not go into a brain shock like I went through.

 

My withdrawals started day 2 of my first taper. They got really bad when I went from 2.5-1.25, 1.25-0.625 (50% drops) and continued after I stopped. My withdrawals actually were the worst at week 4 after my last dose. At week 9 I started to feel better, insomnia and anxiety remained. I’m going on week 13. I believe my body returned to the way I felt before Zyprexa. I still have moderate insomnia and anxiety. My Doctor said to try Trazodone for sleep 6 weeks ago. It makes my a little drowsy but my body feels it so I don’t sleep. I’m tapering off it now. What has worked for me is pure CBD oil. A few days after I started taking CBD my sleep has greatly improved. The CBD may just be a placebo. I’m at a level where I can survive. After I get off the Trazodone, I’ll stop the CBD and see what happens.

 

The only thing that worked at all to help during Zyprexa withdrawals was a hard exercise everyday. Sometimes I felt very little symptoms after I swam. My Doctor said a hard aerobic exercise where the brain naturally releases endorphins makes one not only feel better, but speeds up the brain healing process. I believe this to be true. From what I’ve read on SA other people have experienced this same thing also and the recovery appears to be quicker. I felt like crap but I forced myself. Even 1 hour of relief is a bonus. Plus when I was exercising, I felt no withdrawals. 

 

I’ll never be drug free. I’ve suffered from severe mental illness my entire life. My experience with using many drugs for my illness is that they’re nothing but a band aid. Zyprexa served it’s purpose and helped me through a very bad period. However, it never made me feel good, I felt like a zombie and lived in a cloud. That feeling is now gone. I don’t know what it’s like to feel normal. I just know I feel much better now than when I lived in the Zyprexa brain cloud.

 

Your goal is to get off antipsychotic drugs. I’m not sure I’d do three antipsychotic jumps Zyprexa-Seroqel-Abilify. All 3 are very difficult to get off of and I recommend you Google the withdrawals for all of them. All withdrawals include insomnia. Seroquel itself is very difficult to get off of.

 

The way you’re doing it is gonna suck, suck, and suck. I have no clue what to do now you’re  taking 2 antipsychotics at the same time. If it were me (not an expert), I’d stay where you’re at with the Seroquel and step back up the Zyprexa to where you were comfortable before (2.5mg). Stay there a bit. At that point I’d microtaper both at the same time (maybe a 5% drop in both) and stay at each level a month or two then taper again. I honestly don’t know if that’s correct but that’s what I’d do. Maybe a moderator can jump in on that. 

 

Just remember, you’re on Zyprexa/Seroquel for a reason (hopefully not just for sleep). For me, all of my pre-existing conditions I had before Zyprexa and all the other antipsychotic drugs I’ve taken in the past returned after I stopped the antipsychotics (on Zyprexa the longest).

 

I’d  personally never take an antipsychotic just to try and resolve insomnia. You’re best to just be very mentally strong, exercise, and taper very very slow. You’re probably gonna experience some withdrawals including insomnia. It really sucks,  is miserable, but I think it’s something those of us have to endure to get off antipsychotic drugs. 

 

Best wishes and good luck. Hope some of this helps

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lucyinthesky
16 hours ago, Spideygsm said:

lucyinthesky (beautiful name)

 

Sorry. Kinda long. Trying to give you info and background. 

 

My last dose of Zyprexa was 3/4/18. I had to do a quick taper (3 months) from 30mg do to very bad side effects. I was on Zyprexa 15 years. My body built up a tolerance and the Doctor kept upping my dose. I did not take Zyprexa for sleep. It actually had the opposite effect. If I feel something in my body, my mind attacks that feeling and I can’t sleep. I took Zyprexa for it’s approved use. Prior to taking Zyprexa I did have moderate insomnia and anxiety (insomnia can be caused by depression and anxiety). While on Zyprexa, I actually had to take Ambien because Zyprexa actually caused worse insomnia.

 

To your very good post. When I started my Zyprexa taper, I had about every withdrawal symptom you read about. The worst were severe insomnia and anxiety. My Doctor put me on Ambien and Valium. Didn’t work so I stopped them. For me, I don’t think there’s anything I could have taken to stop the withdrawals. The withdrawals are caused by your brain no longer having the drug controlling your natural brain function. It takes time for your brain to repair itself. That’s why it makes all the sense to taper at very small drops and over a long period of time. Essentially, the brain is allowed to adjust itself slowly and not go into a brain shock like I went through.

 

My withdrawals started day 2 of my first taper. They got really bad when I went from 2.5-1.25, 1.25-0.625 (50% drops) and continued after I stopped. My withdrawals actually were the worst at week 4 after my last dose. At week 9 I started to feel better, insomnia and anxiety remained. I’m going on week 13. I believe my body returned to the way I felt before Zyprexa. I still have moderate insomnia and anxiety. My Doctor said to try Trazodone for sleep 6 weeks ago. It makes my a little drowsy but my body feels it so I don’t sleep. I’m tapering off it now. What has worked for me is pure CBD oil. A few days after I started taking CBD my sleep has greatly improved. The CBD may just be a placebo. I’m at a level where I can survive. After I get off the Trazodone, I’ll stop the CBD and see what happens.

 

The only thing that worked at all to help during Zyprexa withdrawals was a hard exercise everyday. Sometimes I felt very little symptoms after I swam. My Doctor said a hard aerobic exercise where the brain naturally releases endorphins makes one not only feel better, but speeds up the brain healing process. I believe this to be true. From what I’ve read on SA other people have experienced this same thing also and the recovery appears to be quicker. I felt like crap but I forced myself. Even 1 hour of relief is a bonus. Plus when I was exercising, I felt no withdrawals. 

 

I’ll never be drug free. I’ve suffered from severe mental illness my entire life. My experience with using many drugs for my illness is that they’re nothing but a band aid. Zyprexa served it’s purpose and helped me through a very bad period. However, it never made me feel good, I felt like a zombie and lived in a cloud. That feeling is now gone. I don’t know what it’s like to feel normal. I just know I feel much better now than when I lived in the Zyprexa brain cloud.

 

Your goal is to get off antipsychotic drugs. I’m not sure I’d do three antipsychotic jumps Zyprexa-Seroqel-Abilify. All 3 are very difficult to get off of and I recommend you Google the withdrawals for all of them. All withdrawals include insomnia. Seroquel itself is very difficult to get off of.

 

The way you’re doing it is gonna suck, suck, and suck. I have no clue what to do now you’re  taking 2 antipsychotics at the same time. If it were me (not an expert), I’d stay where you’re at with the Seroquel and step back up the Zyprexa to where you were comfortable before (2.5mg). Stay there a bit. At that point I’d microtaper both at the same time (maybe a 5% drop in both) and stay at each level a month or two then taper again. I honestly don’t know if that’s correct but that’s what I’d do. Maybe a moderator can jump in on that. 

 

Just remember, you’re on Zyprexa/Seroquel for a reason (hopefully not just for sleep). For me, all of my pre-existing conditions I had before Zyprexa and all the other antipsychotic drugs I’ve taken in the past returned after I stopped the antipsychotics (on Zyprexa the longest).

 

I’d  personally never take an antipsychotic just to try and resolve insomnia. You’re best to just be very mentally strong, exercise, and taper very very slow. You’re probably gonna experience some withdrawals including insomnia. It really sucks,  is miserable, but I think it’s something those of us have to endure to get off antipsychotic drugs. 

 

Best wishes and good luck. Hope some of this helps

 

Hi Spideygsm, many thanks for your reply and sorry to others for taking over this thread. 

I'm aware that my new situation is less than ideal, although I hope since my time on Seroquel was very short (days rather than weeks), it will be relatively easy to drop it. (fingers crossed).
The original reason for being on antipsychotics was an intense psychosis and I was diagnosed bipolar I, but in 5+ years I haven't had any real signs of bipolar or repeat episodes, so I am keen to see if it might be possible for me to lose the drugs.
It sounds like you have escaped the worst of the Zyprexa withdrawal, even though you are still having some effects, it could have been a lot worse given you had quite a fast taper. I hope you continue to heal and gather strength.
I wish CBD was an option for me, but every time I've tried it, it's had the opposite effect on my sleep and I cannot sleep.

I think my plan is to drop the Seroquel, and start a long slow taper from Zyprexa.

Thank you again! :)

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Altostrata

Hi, lucy. I moved a chunk of the conversation from the tapering Zyprexa topic to your Intro topic.

 

How did you try to reduce Zyprexa?

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Lloyd59

Hi Lucyinthesky, just wondering how your going atm ??? Are you still on Zyprexa ?? Have you tried Melatonin slow release tablets for your Insomnia ? Hope things are improving for you in your life ?? Take care an best wishes for the future. ..  Lloyd from Oz   

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lucyinthesky

Hi guys,

 

I tried to cross-taper from Zyprexa to Seroquel over 15 days, taking the advice of my psych.

 

The plan was as follows:

  • Days 1-4: 75% Zyprexa, 25% Seroquel
  • Days 5-9: Zyprexa 50%, Seroquel 50%
  • Days 10-14: Zyprexa 25%, Seroquel 75%
  • Day 15 onwards: Olanzapine 0%, Seroquel 100%.
  • The starting dose of Zyprexa was 5mg, and the target end dose of Seroquel was supposed to be 150mg.

Unfortunately, as soon as I got to Day 10, and tried to go below 2.5mg of Zyprexa (50% of the original dose), I could not sleep. I've never managed to dip below 2.5mg Zyprexa before when trying to taper. I struggled for a few days, getting by on a few hours sleep induced by Zopiclone, then gave up and returned to the 50:50 mix of Zyprexa 2.5mg, Seroquel 75mg. 

 

My psychiatrist seems to think I should try and keep the Zyprexa at 2.5mg, and taper off the Seroquel, seeing it as a win that I've got down from 5mg (even if the Seroquel has been added).

 

Last week, I successfully reduced the Seroquel to 50mg, but as soon as I reduced it to 25mg, I have run into very bad insomnia again. I'm going to try and hold at 2.5mg Zyprexa/  25mg Seroquel and ride out the insomnia. I did get a few hours of sleep, which is better than before (when I went below 2.5mg Zyprexa).

 

Yes, I am really f*cking frustrated that I'm now stuck on two medications, and am worse than when I started off. I was just so desperate to get off Zyprexa. It's causing me to have zero motivation, really low mood and almost daily suicidal thoughts.

 

I wonder if I went back up to 5mg Zyprexa, it would be easier to get off the Seroquel completely. I am aware that this is really messy.

 

@Lloyd59 How are you sir?

 

 

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Spideygsm

lucyinthesky,

 

You're stuck on 2 very strong meds. When I was tapering Zyprexa, the withdrawals were the worst at 2.5mg, 1.25mg, and 0.625mg. Then at 4 weeks off Zyprexa was absolulatey miserable. NOTHING helped with insomnia during the strong withdrawal phase. Only after about week 9-10 off Zyprexa did the C*D help. I'm not so sure the C*D really helps though. I also made the mistake of trying Trazodone. It didn't help much when I started taking it but now I'm stuck on it for awhile.

 

It's my understanding that Seroquel is a little easier to taper off than Zyprexa because it doesn't affect as many receptors. Jumping up and down on one drug dose to another would seem to cause your CNS to get wacko. Plus it takes awhile for your brain to adjust to any new dose. From what I've learned, I'd stay where your at on the Seroquel (don't change the dose no matter what) and slowly taper the Zyprexa. Just reading your thread it appears it messing up you. It's gonna suck. I know. Insomnia is horrible but it's part of the drug withdrawal process. Exercise. No caffeine or sugar. Lots of water. I feel it's something we just have to endure to get these psych drugs out of our lives. At 14 weeks off I'm still having issues. Just not as bad as during the worst withdrawal phase. Much more tolerable.

 

Good luck. Hope you get well

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arwilliams

@lucyinthesky Zyprexa is much much stronger on the h1 histamine receptors then Seroquel but Zyprexa is a more potent medication.  I would say you may need to try an ever higher dosage of seroquel but I'm not sure.

 

DU1pD.jpg

 

According to Wikipedia seroquel has 2.2-11 affinity while Zyprexa's is 0.65–4.9.

 

 I should also add that Zyprexa is an inverse agonist while Seroquels is not which I do not fully understand the difference.

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Altostrata
8 hours ago, lucyinthesky said:

My psychiatrist seems to think I should try and keep the Zyprexa at 2.5mg, and taper off the Seroquel, seeing it as a win that I've got down from 5mg (even if the Seroquel has been added).

 

Last week, I successfully reduced the Seroquel to 50mg, but as soon as I reduced it to 25mg, I have run into very bad insomnia again. I'm going to try and hold at 2.5mg Zyprexa/  25mg Seroquel and ride out the insomnia. I did get a few hours of sleep, which is better than before (when I went below 2.5mg Zyprexa).

 

You might find the combo works for sleep if you increase the Seroquel slightly to perhaps 30mg plus 2.5mg Zyprexa.

 

I might stay at this mix for a month or more, until your sleep is predictable, and then very gradually reduce the Seroquel via Tips for tapering off Seroquel (quetiapine)

 

until you're down to 2.5mg Zyprexa, then very gradually reduce that via Tips for tapering off olanzapine (Zyprexa)

 

Our tapering schedule is so slow, it might not make any sense to your psychiatrist, but the goal is to get you off the drugs with a minimum of disruption to your life. These big jumps in dosage up and down can cause a lot of problems. Your nervous system is not made of rubber.

 

It sounds like your initial symptoms were a misdiagnosed adverse drug reaction. I am skeptical that prescribing an anti-psychotic for you is at all appropriate any more. The health risks are huge.

 

 

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lucyinthesky
On 6/8/2018 at 12:40 AM, Altostrata said:

 

You might find the combo works for sleep if you increase the Seroquel slightly to perhaps 30mg plus 2.5mg Zyprexa.

 

I might stay at this mix for a month or more, until your sleep is predictable, and then very gradually reduce the Seroquel via Tips for tapering off Seroquel (quetiapine)

 

until you're down to 2.5mg Zyprexa, then very gradually reduce that via Tips for tapering off olanzapine (Zyprexa)

 

Our tapering schedule is so slow, it might not make any sense to your psychiatrist, but the goal is to get you off the drugs with a minimum of disruption to your life. These big jumps in dosage up and down can cause a lot of problems. Your nervous system is not made of rubber.

 

It sounds like your initial symptoms were a misdiagnosed adverse drug reaction. I am skeptical that prescribing an anti-psychotic for you is at all appropriate any more. The health risks are huge.

 

 

 

Hi @Altostrata. Thank you so much for taking the time to share your advice. I really appreciate it. 

 

I've tried over the last few days to find the lowest dose of Seroquel (and Zyprexa steady @2.5,g) that allows me to sleep. I tried 37.5mg and I still could not sleep, but 42.5mg worked great. I will hold at this dose for a few weeks then gradually begin reducing Seroquel, 10% at a time. 

 

Here's hoping we get somewhere :)

 

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Spideygsm

Lucy

 

I’ve  read in-line (so it has to be true) that Doctors have used Seroquel to get people off Zyprexa. Zyprexa is tough. I believe Seroquel affects 11 receptors where Zyprexa affects 17 receptors. I cant tell anybody what to do because I don’t always take advice. Maybe you should stabilize where your at like you’re doing then start tapering Zyprexa first. 

 

Dont fall ito the trap of adding more Seroquel to sleep while withdrawaling from Zyprexa or v-v. 

 

Good luck and stay strong

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lucyinthesky
10 minutes ago, Spideygsm said:

Lucy

 

I’ve  read in-line (so it has to be true) that Doctors have used Seroquel to get people off Zyprexa. Zyprexa is tough. I believe Seroquel affects 11 receptors where Zyprexa affects 17 receptors. I cant tell anybody what to do because I don’t always take advice. Maybe you should stabilize where your at like you’re doing then start tapering Zyprexa first. 

 

Dont fall ito the trap of adding more Seroquel to sleep while withdrawaling from Zyprexa or v-v. 

 

Good luck and stay strong

 

Very interesting suggestion! You're right in that Seroquel is 'better' than Zyprexa. Of course targets fewer receptors, and I had barely any side effects when I was on it for 5 years vs. the heaps of misery that Zyprexa is giving me.

 

My rationale for tapering Seroquel first was to taper the easier one first, but maybe it makes sense to taper the harder one first.  I'll definitely give it some more thought.

 

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lxjuice

I don't know if this is still relevant to you but a lot of people say low dose CBD is stimulating even though it reduces anxiety and that med-high doses (>100mg) can induce sleep. I find that low dose at best, doesn't help insomnia, and haven't tried high dose because it's really expensive in the UK.

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Altostrata

Good points about tapering Zyprexa first, Spidey and lucy.

 

Don't know about CBD oil. Doubt that it's the answer for everybody.

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frasier23
On 6/12/2018 at 1:05 PM, lucyinthesky said:

 

Hi @Altostrata. Thank you so much for taking the time to share your advice. I really appreciate it. 

 

I've tried over the last few days to find the lowest dose of Seroquel (and Zyprexa steady @2.5,g) that allows me to sleep. I tried 37.5mg and I still could not sleep, but 42.5mg worked great. I will hold at this dose for a few weeks then gradually begin reducing Seroquel, 10% at a time. 

 

Here's hoping we get somewhere :)

 

I laid in my dark room and always tried to sleep naturally. In cases of 1-3 sleepless nights (which happened all the time) I took Stesolid or Seroquel (lowest dose) at 4am. I slept 30min - 3hours on that. It took me 2 years to where Im at today. I spent first 6 months mostly in my dark room. Ive read that body/brain resting in 100% complete dark room is almost as efficient as normal sleep . Don't know if its true but for sure has some truth in it.

 

First 6 months I used sleep aids 30%-50% of the nights and the rest just laying in dark room with my issues. (brain adjusted to this - crazy!!!) Every night I tried to sleep naturally. Roughly after 6 months I started to have 1 second of sleep which at that time was enough for me. I knew that my brain was so destroyed anyway so it didn't matter. Less medicine and after 1 year I could sleep maybe for 30min by myself (don't remember exactly) and today my record it 6-7 hours one night. (normally 4-6hours per night). A lot had happened last 10 months.

 

To not become mad, have one to talk with everyday about your feelings , thoughts (someone that doesn't run to doctor).

 

Hoping you all the best. 

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