Bobblehead: Olanzapine cessation

[Bobblehead]

Hello everyone,

 

I am a long time lurker but decided to finally create an account. I've read about peoples experiences with Olanzapine withdrawal on many websites so I thought I would share my experience.

 

I was on Olanzapine for 17 years due to a schizophrenia diagnoses, initially they put my on 5mg but quickly ramped that up to 40 mg. I was on 40mg for about 13 years. About 4 years ago I took the initiative to reduce my Olanzapine because my blood sugar levels, cholesterol levels, triglycerides levels and weight gain were out of control. I was sleeping 12 hours a day on average and had no energy.

 

Back then I had no idea anti-psychotics could have withdrawal effects or that there was a 10% taper rule, I thought I would slowly reduce my dosage, if I became psychotic I would go back, if not i would continue to decrease. I went from 40mg down to 15mg over the course of about 2 years, doing 5mg drops at a time and I was fine the whole time.

 

About 2 years ago when I got down to 10mg my problems began. The major problem was insomnia, I simply couldn't sleep, at all. I ended up having to go back to 15mg and spent a month on 1mg of Lorazepam just to sleep. I spent a few months back on 15mg. I decided to go slower this time and had my doctor prescribe the 2.5mg tablets which is the smallest dosage tablet, then started to decrease again, this time I dropped by 2.5mg every couple of months and doing this resulted in me getting down to 5mg, still sleeping and symptom free. But after 5mg all hell broke loose. I quickly dropped to 2.5mg and then made my first attempt to go to zero, about 3 days after quitting I was in bed suffering bad, no sleep, severe anxiety attacks, severe agitation, its the worst I've ever felt, I don't have the words to describe how awful it was, as much as I wanted to quit I couldn't take it, in a moment of desperation I took 5mg of Olanzapine and within about 3 hours I felt much better. That is when I started to research how to quit Olanzapine and came across the 10% tapering rule (and all the people suffering like I was).

 

My problem is that I had no way to break up my medication by 10% of the previous dose. The best I could figure out how to do is cut my pills in quarters. I've spent the last 8 months dropping my dosage by a quarter pill every 4 weeks. This has proven beneficial compared to last time. When I got down to a 1/4 pill I split that in half so it was an 1/8 of a pill and spent 4 weeks on that. Then I decided to take the plunge and go to zero. I was more successful this time, while I still have some withdrawal effects I am not experiencing the torturous experience I had last time I dropped to zero.

 

Once I went below 5mg my insomnia came back and got worse and worse the lower my dosage I went. I started reading up on sleep supplements and one by one tried them. I've tried Vit C, Vit D, Zinc, Jamieson Herbal Complex (Relax and Sleep), various dosages and forms of melatonin, Benadryl, Unisom (Doxylamine), various teas, GABA, l-theanine, l-arginine, 5-HTP, CBD, CalmAid and PureZzz's.  I had some luck with Jamieson Herbal Complex but once I got down to less than 2.5mg of Olanzapine it became useless. I needed something stronger, I then switched to Benadryl and that put me to sleep but i had side effects, just felt weird the next day, stuffy nose, it wasn't good. I then gave Unisom a try and that worked with no side effect. I was using Unisom for about 4 months but it stopped working after I went to zero. The Benadryl and Unisom only put me to sleep for a few hours anyways, they where not a perfect solution. One thing I found about Benadryl and Unisom is they where very effective anxiolytics, about 70 minutes after taking either one my anxiety faded away.

 

Desperate I started doing more reading on sleep aids and learned about the synergistic effect of combing different sleep aids. I've spent a long time experimenting with different combinations of different products. For anyone that is interested here is what I am taking, I fall asleep quickly and get about 3-6 hours a night, not great but much better than lying in bed with my eyes closed not sleeping at all. Keep in mind that everyone is different so this "recipe" probably won't work for everyone, but I'm sharing it here because I know how brutal the insomnia can be.

 

I wait until I am tired, then half an hour before bed I take

100mg NOW 5-HTP

500mg NOW GABA

2 capsules of Jamieson Herbal Complex (Relax and Sleep). It contains Valerian, Hops, Passionflower and Catnip.

Then right before I crawl into bed I take 5mg Vitafusion Melatonin gummies (I found the gummies work best because they dissolve in your mouth when you chew them and so you get a full hit of melatonin all at once, instead of a slowly dissolving tablet in your stomach).

 

I also take 500mg of Vitamin C, 400 IU of Vitamin D and 12.5 mg of Zinc picolinate (Half a 25mg tablet) in the morning when I get up.

 

I cut out all caffeine, no coffee, energy drinks, soda or anything else. I do enjoy hot beverages during the day so I made an exception for decaffeinated Early Grey tea (it has very little caffeine) which I find makes me feel good (relaxed and alert) during the day.

 

I eat only healthy foods including a lot of pro and pre biotics. I exercise, usually just a long walk, everyday.

 

For my anxiety I found the following combo helpful. In the morning I take 1 calmaid, 100mg NOW l-theanine and 10mg of CBD oil sublingually  (with no THC in in). That keeps me feeling good throughout the day.

 

I'm going into my 6th week Olanzapine free. My major problems are anxiety and insomnia but I've found supplements that help me. Things are not perfect but they are the best they have been. I'm hoping with time my brain heals and I will be able to sleep without sleep aids and that my anxiety will subside. I go for a blood test on Wednesday so we'll see what the results are. Since my initial drop of Olanzapine 4 years ago I've slowly lost 70 lbs, I'm 10 lbs away from my healthy BMI weight.

 

Every once in a while I pop a Lorazepam for a full nights sleep, but that is rare cause I don't want to get hooked and benzodiazepines.

 

Anyways that's my story. It's taken me 4 years to go from 40mg down to zero and the battle still isn't over.

 

"When you're going through hell, keep going" - Winston Churchill

 

Tip: If you are going to experiment with taking multiple sleep aids, first try one at a time to see if you tolerate it well. If you don't have any negative reactions you can start mixing them. If you try taking everything all at once and have a bad reaction you won't know what caused the bad reaction.

[manymoretodays]

Hi Bobblehead and welcome aboard,

 

And thanks for sharing your story thus far here.

Would you:  Please summarize your withdrawal history in your signature.

We generally take a harm reduction approach to going off these types of medications:

Why taper by 10% of my dosage?

^ just for your information at this point in time

 

*What is withdrawal syndrome

Brain remodeling

The Windows and Waves pattern of stabilization

 

Are you experiencing any WD(withdrawal) symptoms besides the sleep problems and anxiety?

Dr. Joseph Glenmullen's withdrawal symptom checklist

 

And congratulations too, especially on reversing the metabolic syndrome effects that can often go along with drugs like Olanzapine.  Super, on the weight loss.  Have you had liver tests done, and then how are you doing with blood sugars?  Were these included in your recent blood tests?

Were you experiencing adverse effects, at the onset of your tapering, and going off of the Zyprexa/olanzapine?

 

And are you on any additional drugs or medications now?  Other than

 

On 1/4/2021 at 7:00 PM, Bobblehead said:

I wait until I am tired, then half an hour before bed I take

100mg NOW 5-HTP

500mg NOW GABA

2 capsules of Jamieson Herbal Complex (Relax and Sleep). It contains Valerian, Hops, Passionflower and Catnip.

Then right before I crawl into bed I take 5mg Vitafusion Melatonin gummies (I found the gummies work best because they dissolve in your mouth when you chew them and so you get a full hit of melatonin all at once, instead of a slowly dissolving tablet in your stomach).

 

I also take 500mg of Vitamin C, 400 IU of Vitamin D and 12.5 mg of Zinc picolinate (Half a 25mg tablet) in the morning when I get up.

 

On 1/4/2021 at 7:00 PM, Bobblehead said:

For my anxiety I found the following combo helpful. In the morning I take 1 calmaid, 100mg NOW l-theanine and 10mg of CBD oil sublingually  (with no THC in in). That keeps me feeling good throughout the day.

 

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.

 

And then ,how did you introduce all these supplements? Did you go with one thing at a time, or several all at once.  Some of these will need tapering, so that you lessen any WD symptoms, when and if you go off them.  And it's so hard to know what does what, when adding in so many different items.

 

BASIC SUPPLEMENT TOOLKIT

King of supplements: Omega-3 fatty acids (fish oil)

Magnesium, nature's calcium channel blocker

 

Important topics about tests, supplements, treatments, diet

 

I did pull up the link, as to what we have on the 5-HTP.  And we do have topics on some of the other supplements that you listed.  If you'd like to read more on them, and/or see what we have......you might just do a search from your main browser.  Just put in survivingantidepressants.org and then the topic of interest, or the name of the single ingredient.

 

And thanks for doing that too, hope you don't mind.  It might be worth it for you.  And I trust that you might have already done some research prior to starting all the supplements you are on.

 

5-HTP(5-hydroxytryptophan) and l- tryptophan

 

And happy to read, that you don't make a habit out of using the Lorazepam.  It only takes about 2 weeks to get dependent on the benzo's.  And then you'd have to do a taper off that as well.

 

Is there any non-drug or non- supplement coping that you've found to help with WD symptoms?  We're big on that.  And also have a whole symptoms and self care forum, that you'll see from the home page.

 

This is your introduction/journal page where you have now introduced yourself to the community, you can ask questions here regarding your tapering, give updates, and just keep a record of your journey.

 

Do let us know how we might help now.  And apologies, on the delay in getting you started and approved.  Holidays and staff shortages I think.

 

And Best Bobblehead.

 

Love, peace, healing, and growth,

moderator manymoretodays(mmt)

 

 

 

Edited January 8, 2021 by manymoretodays

[Hopela]

Coming down from 40 mg long term to 0 mg is quite an achievement, even if it isn't over, well done!

[Bobblehead]

On 1/8/2021 at 3:37 PM, Hopela said:

Coming down from 40 mg long term to 0 mg is quite an achievement, even if it isn't over, well done!

 

Thanks! It hasn't been easy, I've had some really bad experiences along the way, but I'm determined to get off this stuff for good. My too remaining problems are anxiety and insomnia. I want them to go away soon but I realize they may be with me for a while. I've read many forum threads about withdrawing from this medication and it seems anxiety and insomnia are very common... and unfortunately long lasting. The supplements I've experimented with help but they are not perfect, I still have quite a few bad days and sleepless nights.

[Bobblehead]

On 1/8/2021 at 3:07 PM, manymoretodays said:

Hi Bobblehead and welcome aboard,

 

And congratulations too, especially on reversing the metabolic syndrome effects that can often go along with drugs like Olanzapine.  Super, on the weight loss.  Have you had liver tests done, and then how are you doing with blood sugars?  Were these included in your recent blood tests?

Were you experiencing adverse effects, at the onset of your tapering, and going off of the Zyprexa/olanzapine?

 

And are you on any additional drugs or medications now?  Other than

 

I just got my blood test results back from Wednesday and all my numbers are the best they have ever been. My blood sugar is just slightly above normal (I am on Metformin and Forxiga), my 'bad' cholesterol is very low, well within the healthy zone (I am on Crestor) and my triglycerides levels are normal. I don't think there was a liver test, I'm not sure, they tested a bunch of stuff, there was a urine test too, but my doctor was really happy, all my number where in the healthy range, in the past I've had some really bad blood test results so I am really happy too.

 

My doctor started me on Lurasidone (Latuda) about 8 months ago when I hit 5mg of Olanzapine because he was worried that I would become psychotic, I was hesitant but he already locked me up in the psych ward twice and I don't want to go back there so I agreed, he started by titrating me up, 20mg, 40mg, 60mg and wants me now on 80mg. But my schizophrenia is symptom free and I don't want any more Lurasidone. I tolerate the Lurasidone much better than the Olanzapine, I haven't experienced any side effects being on it that I know of. He has also recommended Gabapentin for sleep and anxiety, I have a prescription but I don't know if I want to start taking it, I'm going to stick with my supplements for a while and see what happens. I also have bottles of Lorazepam and Clonazepam but I don't use them, except very occasionally to treat myself to a better sleep. I've also been given 3 Ambien pills to try but I haven't tried them yet.

 

As for side effects at the onset of tapering. I had some weird experiences, they lasted a few months, but they where definitely noticeable. I was peeing a lot more for some reason, my brain felt like it was always 'on', sometime I felt some pretty severe muscle agitation and many times I felt like I couldn't sit still, I was really fidgety, those problems where in addition to the anxiety and insomnia. I've definitely had some really bad days.

 

Quote

And then ,how did you introduce all these supplements? Did you go with one thing at a time, or several all at once.  Some of these will need tapering, so that you lessen any WD symptoms, when and if you go off them.  And it's so hard to know what does what, when adding in so many different items.

 

I did a lot of research online before buying them, then I tried them one at a time. I would try one for a few days and see what happened. Then I would discontinue it and try another for a few days, etc... Individually they didn't really do much but then I started reading about the synergistic effect of mixing some supplements so I started experimenting. The cocktail I've arrived at now seems to help but it's not perfect, I still have quite a few bad days and sleepless nights, but I have found they take the edge off.

 

Quote

Is there any non-drug or non- supplement coping that you've found to help with WD symptoms?  We're big on that.  And also have a whole symptoms and self care forum, that you'll see from the home page.

 

I've become a big believer in CBT (Cognitive Behavioural Therapy) for anxiety, it hasn't eliminated it but as I practice more and more, trying to change my thinking habits I have noticed quite a difference in my anxiety levels. I've also read about various breathing techniques, for me just breathing deeply in through my nose and then out through my nose/mouth helps me relax, just deeply in for about 5-6 seconds and then out for 5-6 seconds, I've read about other breathing techniques and I accept they work for others but simple deep breathing works best for me, with many other methods I run out of breath and get stressed out. I've also started reading about CBT for sleep but I don't know much about it yet, if it can help even a little I will be happy. As for symptoms like agitation, being fidgety and my brain being 'on' the only thing that helped was time, just waiting it out, unfortunately I couldn't find anything that really helped with that. I have also used guided meditations on YouTube, those seem to help sometimes calm me down, when I try to meditate without guidance it doesn't seem to work that well, but when someone guides me in what to visualize and what to do I find it helpful, and there are a lot of videos on YouTube. Another thing I tried was an oil diffuser, putting different scents into the air, lavender, orange, etc... seemed to make be feel slightly better, just some nice sweet smelling air, it doesn't eliminate anxiety or make you sleep, but it has an effect, just puts me in a better mood I guess. Last but not least I've been reading a lot of aphorisms and quotes about mental wellness, they seem to make me feel better too, things like "This too shall pass" helped me push through the bad moments when my withdrawals where really bad.

[Bobblehead]

Oh yeah, I also had episodes of high blood pressure (hypertension), increased heart rate (110 bpm) and heart palpitations that would come and go, sometimes my whole body felt like it was pulsating/throbbing, it could last for hours, it was very discomforting.

[Bobblehead]

On 8/1/2020 at 8:22 AM, DataGuy said:

Regarding the risk of lack of sleep: 

They don't actually know much about sleep, but what they do know is that the risks of sleep deprivation can only be described as trivial. The mortality risk of even long term sleep deprivation is surprisingly low (1.07 hazard ratio for all cause mortality for 4 hours per night sleep), lower than the risk of a sedentary lifestyle (hazard ratio of 1.479 here). Here is a graph from a meta-analysis showing the hazards of lack of sleep vs more sleep than average. You can see that it is much more dangerous to sleep 9 or 10 hours per night than 4 hours per night. https://pubmed.ncbi.nlm.nih.gov/26900147/

 

antipsychotics (D2 blockers) cause the dopamine receptors to become supersensitized

 

Hi @DataGuy, Thanks for posting this graph and information, I was worried about my lack of sleep but this makes me feel a little better. The most I have gotten in the last several months is 6 hours and that only happened a few times.

 

I read dopamine is associated with wakefulness. I discontinued Zyprexa about 6 weeks ago after a long taper but suffer from pretty bad insomnia. Is it possible that the reason I can't sleep is because my dopamine receptors are super sensitive and thus keeping me awake? Do you know how long it takes for dopamine receptors to reset or go back to normal (on average)?

 

Quote

Simply because a given supplement relieves symptoms temporarily, this is not necessarily an indication it is improving health

 

I'm taking some supplements because I find them helpful,  I don't know if I could have come as far as I have without them. But ultimately I want to quit them too.

 

Edited January 10, 2021 by manymoretodays
moved to BH's Introduction, as questions around their case, from anothers topic

[manymoretodays]

 

Hi Bobblehead,

This will be helpful, to have you do a signature.  It's the portion that you'll see below posts, and then it keeps your context evident wherever you post.

On 1/8/2021 at 1:07 PM, manymoretodays said:

Would you:  Please summarize your withdrawal history in your signature.

We generally take a harm reduction approach to going off these types of medications:

 

Just follow the instructions in that link above.

 

And then you are on Latuda, Metformin, and Crestor at present?

And then the dizzying array of supplements.

 

Are you interested in minimizing medications at some point, or even tapering off?

And I don't blame you, on not wanting to go back to the psych ward, and so following along with what is suggested by your doctor.  Is your doctor open to working with you, on minimizing medications?  Or do you have another provider who helps with some of the non-drug coping, like the CBT, and some other practices?

 

And then would you go to Drugs.com and plug your medications into the drug interaction checker there.

Do plug in some of your secondary medications(Metformin, Crestor) too.  And then you might be able to get some of those supplements in as well.

Then go ahead and copy and paste the results here, in a reply.  Thanks.

After you've done that, you might be interested in plugging in some of your remaining medications in the top box there, and then taking a look at some of the myriad of side effects/adverse reactions that occur......that sometimes, I mean often, are worse than whatever you sought care for in the first place.

 

And yay!  If it was me, I would sure hold on starting anything new now....... in the prescription/drug categories.  Let's sort things out a bit, here, and give us a chance to get to know you.  To best support and guide.

 

It may be eye opening for you.......looking at  the drug interactions, and then even the singular drug information.   And I, for one, am feeling hopeful, that you will learn and find that you need less, much less, than your present "cocktail" of so many things right now.

 

Do go on back and if you have not already read through it, have a good look at the why taper by 10% topic too.  As this is going to apply, I think, going forward with beginning to minimize drugs and supplements, on your continued journey to good health in all dimensions.

Have you done any searches yet to find what we have on some of the many supplements that you are on?   I really encourage that, either now, or when you feel a bit more settled in here.  And so want to empower you to take charge, from here on out, on what goes into your body, as well as learning more about our harm reduction model for tapering off.

 

*Tips for tapering off lurasidone(Latuda)

 

And oh, Bravo!!!!  On the lab tests, and results.  No liver panel though, or possibly?  You might ask.

Do you have just one doctor, or more than that?  And so glad you are not just immediately taking everything that they seem to give you.  Bravo on that too.

It's a crazy world when doctors just keep on prescribing more and more, for the problems that some of the prescriptions have caused.  At least I think so.

 

And many thanks for getting to most, if not all questions I asked.  You are doing great! 

 

17 hours ago, Bobblehead said:

My too remaining problems are anxiety and insomnia.

 

And here is what we've got put together for insomnia:

Tips to help sleep: so many of us have that awful withdrawal insomnia

 

I'll leave off here.  And best Bobblehead.

 

L, P, H, and G,

mmt

Edited January 10, 2021 by manymoretodays
add in tapering Latuda link

[Bobblehead]

Hello, I updated my signature with my medication history.

 

I have 2 doctors. A GP and a psychiatrist.

 

My primary goal is to get off of and recover from Olanzapine.

 

As for the other meds. I need my diabetes medications or else high blood sugar can wreak havoc on my body. High cholesterol is dangerous too so I need Crestor. However, both my doctors said my diabetes *could* go away after Olanzapine cessation. If that happens I can discontinue my diabetes medications. My cholesterol without medication could be considered 'ok' for a healthy person, perhaps a touch high, but is considered too high because I have diabetes, but if my diabetes goes away I can get off that too. If I lose another 5-10 lbs that may become a reality, although there are no guarantees.

 

That would leave me with just Lurasidone, so far I haven't experienced any ill effects from that so getting off that would be a longer term goal. I would love to be medication free but one thing at a time, right now my goal is Olanzapine. I would also love to get of all the supplements I'm on but they do help me cope, they are not a panacea, I still have problems, but they have taken the edge off.

 

Yeah, I have checked drugs.com quite a bit, especially when a doc suggests another medication.

 

My doctors don't have a problem with me coming of Olanzapine as long as I take my Lurasidone. They never mentioned anything about tapering though, just to quit, so I have been doing the taper on my own.

 

I took a 3 month outpatient program at the hospital in which they spent some time discussing CBT. I have also done my own independent studying of the topic. I don't have a therapist.

 

Thanks for the insomnia tips link, I'll check it out.

[manymoretodays]

Hi Bobblehead,

Your signature looks good.

And yes, you may be able to manage the diabetes with dietary measures only soon, that would be good.

I just wanted you to do a drug interaction check, at Drugs.com.  Sometimes it's eye opening, and helps decide what to work on next, as far as tapering goes.  You might be able to add in some of the supplements too, just to see.  There's no reason to overdo on medications or supplements.

 

And then you might be able to manage the Cholesterol without medications to someday.  Have your numbers improved on the Lipitor, Crestor, and Bezalip.  How does the cholesterol and triglycerides affect you blood sugars?  I thought they were more thought to be factors affecting ones heart function.  I could be wrong.  I remember one member who had too low of cholesterol, and that caused problems......I think that once that was straightened out, they did much better......in all areas.

 

And it does sound like you've been through a lot to date, Bobblehead.  And I'm sorry for that.

 

And yes, let's get you to a good place with the Zyprexa WD.  How is your sleep going?  Just the lack of sleep can certainly add to ones anxiety and fears.    Other symptoms of note?

 

And best, L, P, H, and G,

mmt

[DataGuy]

On 1/10/2021 at 10:17 AM, Bobblehead said:

 

I read dopamine is associated with wakefulness. I discontinued Zyprexa about 6 weeks ago after a long taper but suffer from pretty bad insomnia. Is it possible that the reason I can't sleep is because my dopamine receptors are super sensitive and thus keeping me awake? Do you know how long it takes for dopamine receptors to reset or go back to normal (on average)?

 

 

 Hi @Bobblehead,

 

Apologies, I'm a bit busy for the moment, so I haven't read your entire thread. But eventually I will read it and be back to answer any questions you had. @manymoretodays does a really great job : )

 

Sorry if any of these questions/comments are redundant. 40mg Olanzapine is quite the monster dosage. Did you ever have your prolactin levels checked while you were on that dose? Elevated levels above normal range can indicate hyperprolactinemia, which can be a sign of an excessive dosage that increases the risk for dopamine supersensitivity.

 

The lurasidone does similar things to olanzapine. Luckily, you are on a lower dosage of lurasidone when compared to 40mg of olanzapine. The current dosage of lurasidone (60mg if I am reading correctly) is equivalent to about 10mg of olanzapine, according to this study: https://pubmed.ncbi.nlm.nih.gov/27460622/

 

I think as long as you don't have psychotic symptoms, you should decline further dosage increases. If you are able to determine you have psychotic symptoms yourself, or through family or friends, you should be ok. I don't think there is any advantage to titrating your dosage up if you are symptoms free. Remaining at the lowest effective dosage minimizes your risk of side effects like tardive dyskinesia, akathisia, dystonia and other problems. Like olanzapine, higher dosages can risk dopamine supersensitivity psychosis, which itself is a risk for relapsing into psychosis, according to Chouinard here. 

 

Dopamine can definitely promote wakefulness, but insomnia can also result from the antihistamine withdrawal effect of olanzapine. Unfortunately, these receptor changes can last quite awhile. While we can't really know in anyone's individual case how long it can take, it will usually range from months to years. Hopefully the fact that you had a nice, slow taper will give you an advantage. 

 

I'm glad you also want to taper off the supplements. These compounds are not tested for safety or efficacy and are not regulated by the FDA, so it is a bit of an experiment to take them, especially on a consistent basis. I don't think you want to risk your health any more than you have to. 

 

I will be back in a few days. Hope I answered your main question! As long as your are getting more than an average of 5 hours sleep, you are pretty golden, so I would not worry too much. Cheers : )

[Bobblehead]

@manymoretodays When I started lowering my Olanzapine 4 years ago my physical situation started to improve, about 2-3 years ago I was taken off Bezalip because my triglyceride levels were better after losing some weight, they have stayed good since then. The Lipitor wasn't working as effectively as they wanted so they switched me to Crestor. As I have been lowering my Olanzapine and losing weight my cholesterol numbers slowly improved so my Crestor has been reduced.

I don't know if the cholesterol and triglycerides levels effect my blood sugar, I didn't mean to imply that if I did, but I think you are right, they are factors dealing with heart function/problems. What my doctor said was that a healthy cholesterol level for a diabetic is lower than a healthy cholesterol level for a non-diabetic. I'm not familiar with the exact numbers but for example, if a non-diabetic healthy person is suppose to have a cholesterol level between 2-3, a diabetic should have a cholesterol level between 1-2. I  don't know the science about why that is, but my cholesterol isn't too low, my doctor said it's right in the range that he wants it to be.

 

The lack of sleep is the hardest part now, and I've read so many stories on the internet about people dealing with it too, that helps keep me going knowing I'm not the only one going through it. It seems to be a very common withdrawal problem with Olanzapine. I'm managing. I have good days and bad days but I just try to stay positive and imagine the day when I can finally sleep without drugs or supplements.

[Bobblehead]

Hello @DataGuy Thanks for replying. Unfortunately I am not getting 5 hours on average, usually 3-4. I'm managing but some days are better than others. And then there are nights when I don't get any sleep at all. There really isn't a pattern to my sleep, it's hit and miss.

 

No, I haven't had my prolactin levels checked that I know of. I get a blood test and urine test done every 3-6 months. Typically is tests my blood sugars, cholesterol and kidney functions. I think there are sometimes a few other tests but I've never heard mention of testing my prolactin levels. I don't think they have checked my liver either as has been recommended by @manymoretodays. They tested my blood cell count when I was first put on Lurasidone but that was normal.

 

I guess I will have to be patient and wait for my histamine receptors to repair, hopefully that will happen sooner rather than later. Are there any foods that can help with that?

 

I've read a lot of people decide to reinstate a small dose of Olanzapine for sleep and just stay on it for the rest of their lives instead of trying to recover but right now I am determined to get off this drug, it's been 4 years and I don't want to give up after all I have been through. The insomnia is the hardest part right now.

 

Thanks again for the info.

[Bobblehead]

I have had a rough few days (and nights), anxiety and no sleep, not feeling so good. My supplements are not helping me sleep and are offering minimal anxiety relief, I had an episode of really bad anxiety so I had to take half a tablet of Unisom (Doxylamine Succincate) to relieve the anxiety, that stuff really helps but it is slow acting, takes over an hour to kick in, but I would rather take that than a benzo, although I wish I didn't have to take anything at all.

 

I've been reading a lot of threads on this website, some Olanzapine related threads but other meds as well. it seems quite a few people end up reinstating their meds to feel better. I'm at the point right now where I am thinking of doing that too. This coming Wednesday will be 7 weeks since my last dose, part of me wants to fight on but part of me wants to give up, the last dosage of Olanzapine I took where I had no problems and felt great was 5mg.

 

I was desperate for some sleep last night so I tried the Ambien (10mg) I have on hand but it didn't help much,  kinda drifted in and out for a couple hours but I wouldn't call it sleep, seems Ambien has little effect on me.

 

I have an appointment with my pdoc so I am going to discuss the insomnia and see what he says, see if he can prescribe something for sleep, if I can sleep I think I'll feel better, I think my anxiety levels are increased from lack of sleep because nothing else is really bothering me right now.

[Bobblehead]

On 1/12/2021 at 5:34 PM, DataGuy said:

Dopamine can definitely promote wakefulness, but insomnia can also result from the antihistamine withdrawal effect of olanzapine.

 

It just occurred to me, I think you are right about the antihistamine withdrawal effect. If you read my post directly above this one, when I take Unisom (Doxylamine Succinate) I feel so much better, and Unisom is a first generation antihistamine which probably negates the antihistamine withdrawal effect of Olanzapine. I took my heart rate this morning and it was 105bpm, 2 hours after taking the Unisom it was down to 85bpm (and my anxiety was alleviated).

 

I think I am going to change my diet to a low histamine diet. I have been drinking a lot of black and green tea (I enjoy these teas and they make me feel alert but perhaps they are doing some harm) as well as eating a lot of yogurt, I looked it up and apparently these foods are high in histamine. I read help with withdrawals from antihistamines includes a low histamine diet, I'm thinking if I eat low histamine foods and take a natural antihistamine supplement such as 'Stinging Nettle Leaf' I may feel a little better.

 

I had never read about the antihistamine withdrawal effect of Olanzapine before, you're truly the "Data" guy, thanks!

 

[DataGuy]

Hi @Bobblehead,

 

I would like you to read this thread on reinstating to stabilize withdrawal symptoms. If we did attempt to reinstate, we would likely start with a fraction of the last dose at which you were sleeping (relatively) well. If that helps and you don't have an adverse reaction, we can increase that dose until you start to sleep and feel better. After you stabilize we can slowly taper that. Stabilizing can take awhile, but it is likely a better option for you at this point than continuing to suffer the insomnia and anxiety. These symptoms of withdrawal can last quite a long time (months or years) before resolving.

 

Hope you start to feel better soon regardless of what you decide : )

Edited January 19, 2021 by DataGuy

[Bobblehead]

Thanks @DataGuy I'll be sure to check out that link. I'm still leaning towards NOT reinstating but we'll see. I've been through so much I don't want to give up just yet. I'm having a better day today.

 

I spoke with my psychiatrist today and he suggested that I try 1mg Clonazepam before bed and 200mg Gabapentin (100mg twice daily), they should work together helping my anxiety and especially my sleep. I looked up a benzo calculator and it said 1mg of Clonazepam is equal to 2mg of Lorazepam, 2mg of Lorazepam would knock me out, I usually take 0.5mg or 1mg or 1.5mg max.

 

I've been reading a lot of stories about Clonazepam, some people swear by it while others despise it, also read some stories about peoples attempts to come of it once dependent. I've only used Clonazepam a few times, my usual go to benzo has always been Lorazepam (and I don't use it very often.)

 

I'm going to cut out all my supplements while I try the Clonazepam and Gabapentin for a few nights, see if I get any results, if it works I'll consider taking it for longer periods of time, but I am weary and aware of possible dependence.

 

Since Clonazepam works on GABA receptors I'm hoping it puts me to sleep while my Histamine and Dopamine receptors slowly recover from the Olanzapine. The way I see it, if these meds really help with my sleep and anxiety, I'll use them while my brain heals from Olanzapine, then I'll have to start tapering off them in the future.

 

As for the histamine diet I mentioned above I looked it up and it is VERY restrictive and should only be done for 4 weeks. It's also confusing. One website said eggs where fine because they don't have histamine, but another website said eggs can cause the body to release histamine, etc... I'm going to keep my diet as is for now, just try to substitute in some healthy alternatives here and there and avoid higher histamine foods where I can.

[Bobblehead]

I quit all my supplements and spent the last 3 nights on 1mg of Clonazepam and 200mg of Gabapentin and barley slept a wink, they didn't even make me drowsy. The only benefit was a total lack of anxiety and fidgetiness, complete relaxation which has been nice, I feel good, just tired and haven't slept. However, since the Clonazepam didn't make me sleep I am going to stop taking it, same with the Gabapentin, I don't want to become dependent on either of them for no reason. This has been disappointing, I was looking forward to good nights sleep, the reviews on the internet for insomnia and Clonazepam/Gabapentin are generally pretty good.

 

My psychiatrist gave me a prescription for Trazadone but I haven't tried it yet. I think I am going to try 50mg tonight and see what happens. I've read good things about sleep and Trazadone, but I also know there is a chance of withdrawals if I take it for a long time, however there are many more success stories on the Internet about quitting Trazadone than there are about quitting Olanzapine, so I'm thinking if Trazadone can help me sleep and give me some relief while my brain recovers from Olanzapine, then I'd consider that a good thing, I'll just taper of Trazadone at a later date.

[Hopela]

Hi @Bobblehead I just read you posts on other threads about reinstatement thoughts at 5 or 2.5 mg. If you're thinking of reinstatement I would choose a low dose, like 0.2 mg if you jumped from 0.31mg 8 weeks ago. These chemicals are very potent even at very low doses and a full 8 hours of sleep may not be worth the increase and may not occur even with a large reinstatement. If 0.2 mg or similar feels ineffective after trying it a few days or a week you can increase in small increments. I've read someone jumped from 0.3 mg describing it as "all hell broke lose" so 0.3mg can be a much too high jumping point and you've actually seemed to have managed it very well in comparison to that. But anyhow if you reinstate I think trying first a low dose like 0.2mg would be better. I'm just on 0.017mg now and that still has an effect.

[Bobblehead]

Hello @Rebmik5555Can you post that information and spreadsheet on this website for download?

 

I agree Zyprexa should never have been approved but if they made it illegal now A LOT of people would suffer bad, being dependent on it for sleep. i just reinstated today because after 8 weeks I can't sleep, and I can't tolerate the way I feel anymore.

 

I am going to see how the reinstatement goes and wait a while to stabalize, then try and taper VERY VERY slowly and see what happens.

[Bobblehead]

Hello @Hopela thanks for the warning. However, after reading @Emily02 post I decided to go with 2.5mg (1 pill) and have already taken it, after reading your post I hope it isn't too much.

 

8 weeks without much sleep is too much for me. And it was about 6 months ago that I hit 2.5mg in my taper and started having real sleep problems. I haven't had a full nights restful sleep in about 6 months.

 

I'll report back tomorrow or the next day and tell you how it worked out.

 

The Trazadone 50mg didn't work. At 100mg I had some success at sleep. However I've decided to try the reinstatement instead of becoming dependent on yet another drug.

 

I'll report back tomorrow or the next day and tell you how it worked out.

 

[Hopela]

@Bobblehead Just one night of 2.5mg won't reupregulate your receptors so that's good but might create a larger disturbance than a smaller reinstatement. You could go with a lower reinstatement over the folowing days and see how that goes.  Maybe a moderator could give advice.

[Rebmik5555]

I do know it is not recommended to reinstate after 3 week, just fyi.

 

I am attempting to attach the spreadsheet, it says Zoloft but it is for any reductions...not sure if it will allow me to attach it or copy it....

https://docs.google.com/spreadsheets/d/1-fcMvplxuJWpaO4urCwSPo2xi3vd6GmxHn3k3VrhBzI/edit?fbclid=IwAR3wRT_2kopTsHNpCxvRBANNv4WjBCMykHyNZ-SIGiZEDDNmLmaF_vuP8-A#gid=40456142

 

 

[Trevor19]

Hi @Bobblehead

I’m sorry you haven’t slept for 8 weeks due to withdrawal, reinstating might be the best choice since you can’t tell how long the insomnia might last. 

I reinstated an hour ago at 1mg, Insomnia is no small deal.

 

I hope you find your sleep, as you said it’s definitely a struggle. 

[manymoretodays]

Hi Bobblehead, @Bobblehead and also @Rebmik5555,

I've moved the discussion around Bobblehead's case, here to Bobbleheads topic.  You can see how this might help to keep all of Bobblehead's information together, and then in context.  And then Trevor19, is just a newbie.....just arrived.  Support them, yes.......but try not to disparage any hope, on their part.  We are all N=1, as Alto says,..........different histories, and different cases.   Rebmik, I'll address my concern with your post.....on your thread in a moment.

 

2 hours ago, Bobblehead said:

Hello @Hopela thanks for the warning. However, after reading @Emily02 post I decided to go with 2.5mg (1 pill) and have already taken it, after reading your post I hope it isn't too much.

 

8 weeks without much sleep is too much for me. And it was about 6 months ago that I hit 2.5mg in my taper and started having real sleep problems. I haven't had a full nights restful sleep in about 6 months.

 

I'll report back tomorrow or the next day and tell you how it worked out.

 

The Trazadone 50mg didn't work. At 100mg I had some success at sleep. However I've decided to try the reinstatement instead of becoming dependent on yet another drug.

 

I'll report back tomorrow or the next day and tell you how it worked out.

 

Bobblehead, I think that you could reinstate at a bit less.  A milligram, or 1 mg, might be a better starting place.

And you have had how much sleep lately? 

Notes would be good to see what is what now.  Have you kept some in the last couple of weeks, even just for yourself, to note patterns and progress?

And yes, share here too, in the full 24 hour segments.

 

You are still taking your Lurasidone 60 mg?

Did you check interactions?  Here they are, for the Lurasidone and olanzapine:  DrugInteractionReport-Drugs.com

And then the Lurasidone-  Lurasidone Uses, Side Effects, and warnings

 

And oh man, Gabapentin and Clonazepam, and maybe Trazodone too now?  That all looks to be about a week, or less ago too.  As you are adding, and then subtracting multiple medications, you realize you are putting a bit more strain on your nervous systems present dysregulation, while it is trying to recover from the WD of Zyprexa, while adapting to another AP. 

Present supplements?

 

And I know, I know, it must be feeling harsh right now Bobblehead........and I really think, that if you are going to keep going this direction, with your psychiatrists help.......you may want to just work with your psychiatrist. 

 

Non-drug coping......any that helps?  The various sleep tips?  Have you found anything that even helps a little bit?

 

And okay, oh Bobblehead......I'm hurting, that it is so very tough for you now.  In my thoughts and prayers for healing.......and soon.

 

L, P, H, and G,

mmt

 

[Bobblehead]

Quote

Bobblehead, I think that you could reinstate at a bit less.  A milligram, or 1 mg, might be a better starting place.

And you have had how much sleep lately? 

Notes would be good to see what is what now.  Have you kept some in the last couple of weeks, even just for yourself, to note patterns and progress?

And yes, share here too, in the full 24 hour segments.

 

Haven't had much sleep which is why I don't feel good. No I haven't taken notes but there really hasn't been much progress. I'll report back and let you know how I feel tomorrow. I reinstated the 2.5mg a few hours ago, so far no problems but I realize it is probably to early to any effect. I read it takes Olanzapine about 6 hours to get into your system and a week before a steady state in your blood plasma is achieved.

 

Quote

You are still taking your Lurasidone 60 mg?

Did you check interactions?  Here they are, for the Lurasidone and olanzapine:  DrugInteractionReport-Drugs.com

And then the Lurasidone-  Lurasidone Uses, Side Effects, and warnings

 

Yeah, still taking 60mg. I looked up the interactions and the warning is "Moderate". The good news is I don't experience any of the listed side effects.

 

Quote

And oh man, Gabapentin and Clonazepam, and maybe Trazodone too now?  That all looks to be about a week, or less ago too.  As you are adding, and then subtracting multiple medications, you realize you are putting a bit more strain on your nervous systems present dysregulation, while it is trying to recover from the WD of Zyprexa, while adapting to another AP. 

Present supplements?

 

Yeah, I tried all those within about a week or so but I also quit all my supplements in that time so i could see if the new meds where doing anything, they didn't do much. I don't feel any different from trying those meds, just not sleeping that much and feeling like crap.

 

Quote

And I know, I know, it must be feeling harsh right now Bobblehead........and I really think, that if you are going to keep going this direction, with your psychiatrists help.......you may want to just work with your psychiatrist. 

 

Non-drug coping......any that helps?  The various sleep tips?  Have you found anything that even helps a little bit?

 

And okay, oh Bobblehead......I'm hurting, that it is so very tough for you now.  In my thoughts and prayers for healing.......and soon.

 

Yeah, I spoke with my psychiatrist about a week and a half ago. I have another appointment with him in February. He knows I have tried Clonazepam, Gabapentin and Trazadone because he prescribed them, but he doesn't yet know I stopped using them fairly quickly because they didn't work, and he doesn't know I reinstated the Olanzapine today.

 

Unfortunately the various sleep tips didn't help much. Nothing got worse but nothing really got better. Withdrawing from this drug is brutal.

 

Thanks for your concern. I'm just hoping this reinstatement gives me some relief. The last time I was doing okay was at 5mg (6 months ago). I've only reinstated 2.5mg because after 8 weeks of cessation I may need less to get the same effect but it's impossible to predict.

[manymoretodays]

Well, it's not too late to back down to 1 mg. tomorrow with the olanzapine/Zyprexa. 

Honestly, sometimes less is more.

 

And okay, here's some on the sleep tips:

 

 

Tips to help sleep -- so many of us have that awful withdrawal insomnia

 

Path to Better Sleep FREE online for everyone from the US Veterans Administration

 

Music for self-care: Calms hyperalertness, anxiety, aids relaxation and sleep

 

What is the sleep cycle?

 

Melatonin for sleep: Many people find it helpful

 

TV or computer use in evening can disrupt sleep: Bright light signals the brain that it's daytime

 

The emotional can feel pretty abominal/awful too:

Neuroemotions

Non-drug techniques to cope.....

 

And I do too.  I do too Bobblehead.  So hope that this reinstatement brings even a bit of relief.  A ton of relief would be better.  And yes, that's right.......It'll be the usual 4-7 days, at least to see if it helps.  Maybe sooner though.  Never discount sooner, right?

 

((((((Bobblehead)))))))) those are your hugs and butterfly wings.  You deserve them and have earned them, twice or three times over!

........and best, L, P, H, and G,

mmt

[Bobblehead]

Thanks for the support and well wishes, this site rocks! 😀

[hayduke]

As mmt wisely notes, we are all different.  I'll share my experience though in case it's useful to you Bobblehead. 

 

When I was on 10mg I'd sleep 10-12 hrs a day.  During the taper this fairly gently came down to around 8-9 at 2.5mg.

 

Below 1.4 mg I started noticing pronounced anxiety, some derealisation and I was sleeping less.  My perception of the world was altering at that point, somewhat subtly but quite noticeably - you might file it under 'mood' but it is what it is.  I'm pretty sure that with the dosage level change around there I was experiencing a change in receptor affinity.  There is a solid explanation of the phenomenon here.  Like you, I also suspect the histamine receptors might be implicated there.  (Side note:  hay fever sucks on this drug)

 

At 1.19 mg the wd-driven anxiety was persisting and I decided to updose to 1.25mg and hold.  After about a 6 week hold there, my nervous system had caught up and while I was now sleeping 7-8 hrs a night with the occasional 9 (like a person who hadn't been drugged might), I was out the other side of the bother and could resume my taper without too much disruption.

 

I doubt the levels of the drug that cross these receptor affinity 'borders' are the same for everyone, but noting that crossover could well be in the range you crossed in the last few months.

 

Hope you get some zzzs soon mate

[DataGuy]

Another interesting note @Bobblehead, is that @hayduke, @Hopela and I calculated the D2 receptor occupancy of Olanzapine (zyprexa) based on an article providing the relationship between dose vs receptor occupancy. You can see it here.

 

Helps to explain why things seem to get a lot harder when you get down to the lower dosages. Each decrease of similar magnitude (by mass) results in an even larger decrease in receptor occupancy.

 

 I hope you are able to get some sleep soon!

Edited January 30, 2021 by DataGuy

[Bobblehead]

Thanks to the both of you. Also very interesting @DataGuy

 

So it's been a week since I reinstated, thought I would provide an update. It's all good news. I feel better today that I have in a long time.

 

The night I reinstated I slept a little. I actually fell asleep but not for long, the rest of that night was a partial sleep., somewhere between being awake and asleep, I don't know how to describe it. I stuck with the 2.5mg (1 pill) for 4 days and each night was pretty much the same. The great thing was that the first day after the night of reinstating I felt phenomenal, no anxiety, no restlessness, no agitation or fidgetiness, all my withdrawal symptoms where gone, it has been like that ever since. Other than insomnia and some anxiety my withdrawal symptoms have been minor over the last little while, but the next day after reinstating all of it was gone. I stuck with 2.5mg for the next few days to see how I would respond, I kinda slept but it wasn't a good sleep, but it was better than it has been the last 8 weeks when I hadn't take any Olanzapine. After 4 days I upped my dosage to 3.75mg (1.5 pills). At this dosage I have had no withdrawals or side effects either and the last few nights I have been sleeping great, full 7-9 hours. I even woke up to pee, then was able to go back to sleep. So it seems 3.75mg is my magic number right now. That is an improvement from being stable at 5mg 2 months ago. During this week I haven't taken any of my supplements either, as things stand I don't think I need them anymore.

 

As per the advice of this website I am going to stick with 3.75mg for a few months and fully stabilize on that, then I will begin an ultra slow taper, I don't care if it takes me a few years to get to zero, even though I would like to be off Olanzapine as soon as possible, really I am no rush.

 

I guess with this drug super slow and steady wins the race.

 

 

[Emily02]

Hi Bobblehead

I’m really you are feeling better, thanks for the update.

I’m really happy that you can sleep now. 7-9 hours of sleep sounds amazing.

[DataGuy]

Great news @Bobblehead. Not fun being in acute withdrawal, so glad you were able to pull out of it. Hope you are able to avoid starting anymore psychotropics or supplements, and then we can start trying to reduce when you're ready. Enjoy your stability : )

[Venkat]

Hi @Bobblehead

 

Just dropped in to say I am extremely happy for you. 

Wishing you a safe journey. Take care.

 

Regards, venkat 

[Bobblehead]

Thanks @Venkat and @DataGuy ! Things are still going well... ☺️

[Emily02]

Hi Bobblehead

 

Just popped in to ask you how are you doing? How’s your sleep? How about withdrawal symptoms?

Are you still on 3,75?