☼ SorrowExpert -- thought I was damaged for life, but I'm not.

[SorrowExpert]

I have been attempting to get off of Zyprexa for nearly three years now.  Soon after I started my taper three years ago, I developed severe agoraphobia, and it hasn't improved at all since then.  I've suffered constant chronic derealization and neurological pain every day since I started trying to taper.

 

Last November I was nearly to the end of my taper, and everything fell apart and I was hospitalized, where they SLAMMED me with nearly the maximum possible dose of Zyprexa overnight.  I nearly died in that place.

 

I've tapered back down to some small dose now.  But the damage has been seriously compounded, and I'm in agonizing pain every day.  During my last taper, I could at least go out and drive, sometimes, on days I was feeling good.  I could take long walks.  Now the neurological pain and derealization is so bad that I am confined to a room most of the time.  Much of the time, I am confined to my bed.

 

I will probably fail this taper as well.  Even if I do manage to get off of it, I am fairly certain that I have permanent neurological damage, and will have some type of protracted withdrawal syndrome that will continue for years.  I don't believe I will ever recover from the agoraphobia - the recovery rates are poor even for people not on medications and without the huge amount of problems I have.  

 

Every minute of the day the pain shoots through my head and body, and the derealization makes me constantly feel like I'm on some nightmare drug trip that I cannot escape.   I can't work, can't drive, can't walk, can't read, can't live.

 

My mother was recently diagnosed with dementia and late-onset schizophrenia.  Watching me suffer has driven her out of her mind.

 

Doctors have recommended trying other medications.  I know they won't work and will only make things worse.

 

I wish I'd never listened to them in the first place.  I wish I never trusted them.

 

And now I mostly wish I just wasn't here.

 

 

[burnedbypills]

I hear your pain.  I'm trying to get off of remeron.  I am trapped in my room most of the time.  I relate about your mom.  My mom has also been damaged by my battle against these poisons.  Great website.  You will find much support. 

[Finn]

Hello, you'll find support here. I'm sorry to hear about your pain and troubles. I really hope things improve for you. As bleak as things may seem, believing they'll always be bleak won't help any.

[areyouthere]

Welcome Sorrowexpert ... I'm very sorry that you are having to experience this. Many people here have had very poor advice from the medical community. Generally the suggestions you get here are very, very specific and helpful.

 

But in order to help you we need to know what medications & at what dose you are currently taking right now. Please reply with this information and the help will begin!!

 

In the mean time please be gentle with yourself and check out the Self Care thread for some strategies to dull the symptoms you are currently enduring. That thread is here.

 

Again... welcome!!!

[Laqiya]

Welcome SorrowExpert,

 

I'm so sorry you are going through all of this pain and suffering. 

 

Zyprexa is a terrible drug but you CAN taper off it and recover slowly. It does get better. At least this has been my experience.

 

Please try to be hopeful and take care of yourself even though it is hard.

 

I've found the Symptoms and self care forum especially helpful. I've found accepting and embracing symptoms, and nurturing yourself, no matter what happens, to be the best thing to do in the circumstances.

 

Best of luck on your Taper. People here who know about tapering will probably be able support you with their knowledge if you need it.

 

Congratulations on coming so far on your recovery journey even though it has been painful. You should be proud of your achievements.

 

Take care <3

[dunerbug]

I'm so sorry you are hurting. 

 

I wish I can add more... 

 

It hurts my heart to know anyone ever suffers this way. 

 

Hang in there.

[Jemima]

Hello, SorrowExpert,

 

I'm sorry to read that you've had such an awful time.  Here is our topic on tapering off Zyprexa, which I hope will be helpful:

 

http://survivingantidepressants.org/index.php?/topic/3743-tips-for-tapering-off-zyprexa-olanzapine/?hl=zyprexa

 

Things will get better as you get off the drug.  I know that's hard to believe now, but try to keep in mind that hopelessness is a withdrawal symptom.  And please don't blame yourself for your mother's dementia.  My mother died from that and it's caused by narrowed blood vessels, usually from arteriosclerosis, that obstruct oxygen from getting to the brain.  The late-onset schizophrenia is no doubt a symptom of that.  There is no way that you could be responsible for obstructing your mother's arteries.

 

When you feel up to it, please enter your drug history in the signature area of your profile, like so: 

 

http://survivingantidepressants.org/index.php?/topic/281-bts-please-remind-posters-about-signatures/

 

As areyouthere said, we need that information to give more specific advice.

 

Welcome to the forum.  You'll find lots of solid information and friendly support here.

[Nikki]

So sorry.  Heartbreaking to know people are suffering.  I don't know how to get off Zyprexa, I think the link Jemima posted should help. 

 

Post often, it helps cut the grief.....

[Edted]

Dear Sorrow Expert:

I am saddened by your post. In part, because I have watched my son go through the horror of failed tapers (over and over)and the subsequent slamming of the system with high doses of aap's that wiped out all the hard won gains during the taper. Please read my intro and you will note the great fear with which we considered another taper. It takes a lot of time to digest the great volume of information on this site. If you wish to share the specifics of your last attempt to taper (being very detailed), the experienced folks here will be able to point to when and where things likely went awry. I don't want to make this post intolerably long, so I'll end that comment by saying I think a detailed description of the failed taper is extremely important. Another part of what saddens me in your post is your blaming yourself for your mom's situation. I wish you would accept that the unfounded self-blaming is characteristic of the post high dose reinstatement phase. I asked my son once, why in the world he (the victim) kept kicking his own a$$. He said that maybe it was because it was the only one available. God knows the pill-pushers aren't held responsible. The saddest part of your post, I thought, was the comment that this taper would fail too. Despite all the failed tapers for my son, (we had never availed ourselves of the information on this site), we hadn't recognized that if one goes slow enough, there may be set-backs, but you can get yourself back on the path before things degenerate so far that you end up back in the hospital. Specific to Zyprexa ( for my son, anyway) was the degree of derealization. It was extremely effective at knocking down psychosis, but left him every bit as out of touch with the world. Each time he was placed on the drug, he thought that the damage would be irreparable. He's on a different drug now, so I don't have a taper success story to tell yet, but absolutely, positively the Zyprexa effects were not permanent. Before your last taper went south, I bet you were seeing yourself come back. You are still in there. My son has been kicked around by drugs for nine years now, he's still in there fighting to get out. Folks here are in your corner. This shouldn't have been done to you and so many others. Please share as much as you can. Don't worry about bring long-winded (like me (). What do you mean (in detail) by derealization; by neuropathy? The people here have been so kind and so helpful to my son and to me, I am happy you have finally found them.

Warm regards,

Ed

[Edted]

Oops. Forgot to mention, my agoraphobic son is currently acting in a play (he thought the drug had taken that away forever too). Drugs...hideous. The mind, soul and body....incredible.

Keep the faith,

Ed

[Edted]

Dear SorrowExpert:

Just checking in to see how you are doing. Thinking good thoughts at you,

Ed

[Narcissus]

Great response Edted.SorrowExpert, I'm struck by your story.  Your suffering comes across very strongly, it's chilling.  I'm so sorry you for your losses.  You are, like many others here, a casualty in the great drug experiment we're in at the moment.  I would caution against promising yourself permanent damage, as I think the general consensus here is we all recover, albeit slowly.  

 

As Jemima has said, please give us some specifics regarding your taper so we can attempt to offer advice.  Or just let us know how you are doing.  You sound very much alone, one of the virtues of this place is the slight feeling of community it provides.  

[SorrowExpert]

I'd like to thank everyone for their words of encouragement.  Just letting you all know that I'm still here and have read your posts - the pain has been slightly better this week which has been a blessing.  I'll try to add more about my last taper attempt, and what I'm doing now as soon as I'm able.  Again, thank you all for keeping me in your thoughts.

[Nikki]

SorrowExpert.....nice to hear from you, and glad your pain has lessened.  I am not familiar with Zyprexa, does it come in a liquid form?

 

The only advise I can offer is to try and stabilize on a particular dose which is what most of us do when feeling poorly.  There are alot of people here who have taken Zyprexa.  Read thru their posts.

 

Sending you a prayer right now.....

[Edted]

SorrowExpert. Thank you for posting. People here do care and worry about each other. I know what you mean about posting when you are able. The reason I post about my son (rather than him posting), is that he's just not in a place to post yet. Great news that you are seeing a little relief! Hope there is more relief soon.

Be well,

Ed

[lexicon]

Dear sorrow,

I have been following your thread, and have kept you in my prayers ..

Thank you for the update, it is a blessing that you are a bit better.

Hang in there, by all accounts things change and get better ..

Sending you thoughts of healing ..Lexi

[SorrowExpert]

I have been terrified lately of the idea that I'm going to be permanently institutionalized in a long-term care facility.  My mother seems to have developed a form of dementia, and I think it's only a matter of time before she is not able to help me at all.  Prior to this, she was my primary caregiver.  My father is 86 years old and is not able to help very much, either.  I can do very little for either of them due to my constant crippling derealization, agoraphobia, pain, and anxiety.  

 

The building I live in has been put up for sale and I fear it is only a matter of time before we are evicted.  This apartment is all I have known for many years, and I don't believe that I'll survive a move to anywhere else.  I don't know where I'd go!

 

I've also started experiencing bad withdrawal symptoms lately - insomnia, a temperature during the day, and much more severe derealization/depersonalization.  Each day is absolutely miserable, and I'm NOWHERE NEAR the end of my taper.  How am I going to stand the symptoms getting worse!  Everyone I read about who tapers off these neuroleptics talks about how they eventually have to go through 20 to 30 nights of total insomnia before their sleep returns.  I can barely get through 48 hours without sleep before I feel I'm ready to be committed.  I'd never survive that kind of insomnia.   I think constantly about how I know that i'd DIE if I were to be pulled off this medication too quickly.  It's so horrible to think about!

 

My mother has been my only friend and supporter for all these years, and I fear soon we will be separated.  My parents will be gone and I will never see them again.   I will be put in some long-term care facility and they will force feed me drugs for the rest of my days as I sit in a wheelchair in total unending neurological agony. 

 

I barely slept last night.  I'm terrified I won't sleep tonight.  If normal sleep doesn't return soon, I'll probably end up in the psych ward again, slammed with medication.  I don't know how I can ever win this fight.

[Iggy131313]

sorrowexpert, is it withdrawal you are dealing with or the effects of the meds, or have you always needed some care and help with mental health issues?

 

are you in the uk? there could be carers who could come out and help to support you, if you are in uk I could recommend some ideas?

 

oh, just seen your in boston, if you are entitled to benefits could you advertise for a support worker for a few hours per day, or do you feel you need 24 hour care.

 

sometimes the owrry about things happening is worse than the things happening themselves, why would you be evicted? surely whoever buys the building would keep the tennants in? have you been told you would have to move?

[Meimeiquest]

Hi Sorrow,

 

My heart also goes out to you. I finished a too-fast Zyprexa taper the end of December 2012. The insomnia is indeed difficult. I ended up taking oxazepam (a metabolite of Valium). Now I have to get off it, too, but to me it was better than giving up. I was only on Zyprexa 5 mg as a co-medication for bipolar disorder...I'm guessing you've been on more. It is hard for me to say what happened because without the sedation of the Zyprexa the AD I was on made me manic. And my emotions were totally off the wall. And tons of memories coming back...my dr. said that is normal when withdrawing Zyprexa. If you have had trauma in your past, this might be a time to be able to look at it with a therapist. I'm kind of throwing random ideas..seems anything would be better than the hospital. You might even just want to hold where you are with the Zyprexa until you know what is happening with your mom and apartment.

 

Have you ever mentioned the possibility of psychiatric home nursing to your doctor? I don't know if it is something that you would like, but it is helpful to some people who can't get out. Warmly, Meimei

[Edted]

Dear SorrowExpert:

I am so sorry that you have so much on your plate right now. As incredibly helpful as this site can be for dealing with withdrawal, and the after effects of drug exposure, sometimes additional things might be helpful. I don't know if you are familiar with the "Mad in America" site. Although I don't find it to have the knowledge base for dealing with withdrawal or the level of caring that this site has; they do have a resource directory that includes peer respite groups. I haven't dealt with any of the groups on their Massachussetts list, but the concept of support from a local group sounds like a good one. From visiting several of the sites linked from MIA's directory it appears they have state funding and will call, or visit if you wish, to try to help. Please find the link below:

http://www.madinamerica.com/service-directory/.

From that link, choose "Massachussetts". Please let me know if that is useful. I look forward to hearing from you.

All the best,

Ed

[SorrowExpert]

I've been going through an extremely difficult period in my taper - hellish symptoms, insomnia, and severe derealization with no letup for over a month.  Is it the experience of most people that the taper becomes harder and harder as they go, until everything blows up at the end of the taper?  If so I'm really screwed - I still have quite a ways to to on my Zyprexa taper and if things get any more difficult than they are now I won't survive.  I'm thinking about taking a different medication in the hope that it will make withdrawal easier...but in my heart I feel it will just make things worse.  I don't know what to do.  I'm going to end up in agony in an institution for the rest of my life, that's all I can think about.

[aileene]

How many times have you been in a hospital or institution?  How old are you now?  If you are young and haven't been through this, it is scary.

 

 I was in and out of hospitals in my 20's.  then when i reached my 30's i went about 20 years before the next hospitalization, caused by a side effect of a psych drug.  BTW, I was never place in a state hosp., even after numerous hospitalizations  My hospitalizations got much better.  I learned how to get out.  i took the drugs and played the game to get out asap.

 

If you feel yourself feeling really sick, I think it would it better to go back to more meds, the ones that work for you the best.  i suffered some depression when i went too low on my meds.  Reducing meds has to be done so slowly but i think that is the key.

[aileene]

also....If i ever end up in the  psych hosp again, i plan to be selective with the med given out to me from the dr.  i think now it is easier to refuse meds in a hospital.  I ended up so overdosed and dysfuntional when i got out.  this last time, i got out after 10 days.

 

again, if it is too difficult to reduce the med, go up on the mg.  i do this without doctor's permission.  i am responsible for my life.

[Rhiannon]

Sorrow, please start a thread in the Introductions section. That's where you'll introduce yourself and talk about your own situation and ask for help and advice. This section is more general, for discussion of symptoms and how to address them, and things that help us through the withdrawal process.

 

You probably need to stop tapering and hold for at least a month. You may need to reinstate. I don't know your full medication history so I don't know. If you post in Introductions, people will help you there.

 

Somebody who knows how to move posts and threads can move these to that thread...(please? I don't know how!)

[Altostrata]

I joined Sorrow's recent posts with her Intro topic.

 

I'm very sorry you're going through this, Sorrow. If you've been tapering very slowly, perhaps this is a good time for a hold.

 

Yes, your nervous system can stabilize even when you are still on the drug. Hopefully, you will see some windows showing this is happening.

[Rhiannon]

It really sounds to me like it's time for a good long hold.

 

Not everyone finds tapering to be such a constant hell. With a slow controlled taper many of us have a decent quality of life much of the time. It can happen.

[SorrowExpert]

I've been withdrawing from Zyprexa, and am down to a very low dose of the medication (~0.2 mg, signature needs updating again).  In some ways I've recently had big improvements in my symptoms - the pain seems less, the agoraphobia has been better, and my energy is improved.  Unfortunately there's a big problem - I can't sleep.  I've had serious insomnia every night for about 2 weeks now, and though I'm again holding right where I am on my taper, it doesn't seem to be getting much better.  So none of these improvements make a damn bit of difference if I can't sleep!  

 

The withdrawal symptoms I do have are cruel in that they increase in intensity throughout the day, and are worst when I'm trying to go to bed.  If I don't fall asleep IMMEDIATELY after I get into bed, they keep increasing in intensity until I feel like I'm on the verge of psychosis and have to take a small amount of extra medication to calm things down and get to sleep.  But I can't always do this, or I'll become dependent on the higher dose!  I haven't heard of anyone else with withdrawal symptoms that build up as one gets tired like this.  Why does this happen to me?

 

Even when I get just 6 hours, I feel absolutely miserable, my derealization/depersonalization is off the scale, and get afraid that I'm going to develop psychosis and end up back in the hospital.  

 

I've read other horror stories besides mine about coming off this medication, and I keep thinking about the progression:

 

insomnia ---> anxiety ---> panic ---> psychosis --> hospitalization ---> forced drugging ---> ruining of years worth of slow tapering

 

So when I try to sleep it feels like I have a gun to my head saying "Fall asleep NOW, or this progression WILL happen."  And of course this prevents me from sleeping.

 

I've had to use tricks lately to get to sleep: taking a little extra medication, taking an antihistamine, taking some Trazodone, using an Ambien, etc.

 

Does anyone have any advice?

[Meimeiquest]

Hi SE,

 

Good to hear from you, I've wondered how you were doing. Good work!

 

I think the killer Zyprexa insomnia is due to its strong anti-histamine effect. Are you already on magnesium and fish oil? I would definitely try them. In the symptoms section there is a long thread on insomnia, also a section at beyondmeds.com. You can also try a low-histamine diet, info also at beyondmeds.com. If you do need to take meds, I would suggest rotating them to reduce the need to have to taper them, and they might work better that way.

 

As a worst case scenario, maybe you could discuss with your parents their giving you a certain dose of Zyprexa once if you were so tired that reality started to slip. Just thinking that would beat the hospital.

 

I've found if I can just lay quietly awake, I feel better in the morning than if I mentally fight through the night. Also, not sleeping and feeling tired is less risky than not sleeping yet still not feeling tired.

 

Keep us posted!

[SorrowExpert]

Hi, thanks for the reply! I will give the magnesium and fish oil a try.  Over the past 2 weeks I've had to use a couple "assists" to get me to sleep some nights.  As you say, I've "rotated" these aids so as to hopefully not to become dependent on any one thing.  I have Ambien, but I really don't like using that and I've only used it 1 night.  I have Trazodone, of which I have occasionally taken a small dose (25 mg) to get to sleep.  And on some nights I've given in and taken an extra little dose of Zyprexa, maybe 5 mg total over the past 2 weeks.  Even a very small fragment seems to make a difference, but obviously I don't want to do this too much.  I'm holding right where I am on the taper (though there's not too much further to go). I've been getting a max of 7, minimum of 3 hours of sleep a night with this strategy.  I've come too far to let this hurdle stop me now!

 

I also think I sleep more than I realize - I've read about "sleep state misperception" and think that's happening to me sometimes.  I'll think I'm lying awake, but the night will just fly by and 4 hours will pass in what feels like minutes...though the unfortunate thing is that even if I'm in a state of light sleep during this time, it doesn't really contribute to a feeling of being rested.  It seems like I've lost the ability to nap without drugs over the years, so if I only get 3 hours sleep it means I have to stay up for the whole day until it's my normal bedtime again to sleep successfully. Blech.

[SorrowExpert]

I find myself wondering lately about whether the taper I'm on has any chance of succeeding.  Particularly, I wonder about what happens when it's time to come off the last tiny fraction of a fraction of a milligram of medication.  

 

I wonder if somehow the brain adjusts so that smaller and smaller doses of medication have a larger and larger relative effect, so that when one has to finally stop taking the last tiny fraction of medication it causes the same result as if one had cold turkeyed from a high dose of the drug.  I don't see how this could be physiologically possible, really, but who really knows anything about these medications work long term and the effects of the structural changes they make in the brain.

 

If there is a good chance of this happening, I don't see any point in continuing my taper any further.  I know most people would argue that I'm in need of a long hold on my dose in any case, and that's what I'm doing now - I had been pushing my taper hard.  I think long holds are an easy option for people who are functional on their drug.  I'm not functional on mine - I have agoraphobia induced by panic from a too-rapid taper several years ago.  Every day that I have agoraphobia is a day of my life gone, and one more day that makes it more and more likely that I'll never be anything more than a disabled man for what remains of my life.

 

But even if I slow the taper way down, if all that means is that I crash and burn at the end of the taper a year from now rather than 6 months from now, there's no point to any of it.  I'll take the life I have now, on a low dose of medication in perpetuity, over a life on a high dose in some group home any day.  

 

I'd have to feel much better than I do now to have confidence that the end of a taper will work.  And I'm just not feeling it yet.  

 

And then, even off the medication I'm facing years worth of protracted withdrawal symptoms...what's the point of any of this?

[Jemima]

A slow, sane taper should not result in prolonged withdrawal symptoms.  The whole idea of tapering is that it supports your brain just enough to avoid withdrawal symptoms.  There may still be a few bad moments after completely tapering off, but nothing like what happens after a cold turkey.

 

I think you're having a very negative mood because of pushing the taper too hard.  Please hold or even updose a bit and hold until you begin to feel better.

[Altostrata]

.... I wonder if somehow the brain adjusts so that smaller and smaller doses of medication have a larger and larger relative effect, so that when one has to finally stop taking the last tiny fraction of medication it causes the same result as if one had cold turkeyed from a high dose of the drug.  I don't see how this could be physiologically possible, really, but who really knows anything about these medications work long term and the effects of the structural changes they make in the brain.....

I don't believe there's any empirical support for that assumption. Try not to scare yourself with thoughts like these.

[Altostrata]

Meditative breathing is a good way to cope with anxiety about sleeping.

[Edted]

Dear SorrowExpert:

I'm so sorry that you are struggling. I don't know what dose you are on now or how long you have been holding. If you want to provide that information, folks can comment specifically on the taper, but (my opinion) being smart about the taper is just one piece (an important one) to getting through.

 

If you've read my thread, you know that my son had quite a bit of trouble, but he is doing wonderfully now. He is still tapering. The dose is very low, but the slow taper means it will be a long time until he's off these d**n things.

He doesn't think about that much anymore. By going slowly, he has been able to get on with his life. He is immeasurably better today in every way than he was at a lower dose that he'd moved to too quickly. Yes, the system heals if it is allowed to keep up with the withdrawal.

 

Since August, he has moved out in his own, gotten a job he loves, has a second job he also enjoys, made some friends, and is currently applying to grad schools.

I called him after I read your post and asked him what comments he might have. He sends you his best and suggests that letting withdrawal become the center of your life has drawbacks of its own. Of course you need to maintain a healthy regimen and follow the conservative protocol advocated on this site (which seems to be a critical part of his ongoing recovery), but there can be pleasure every day.

He mentioned that you might look for something that gives you joy, whether that's a hobby or a charitable activity, or whatever. Better yet if it is something entirely new to you. Whatever it is, it should be something you can get absorbed in.

 

Withdrawal should be something going on in the background, not what you dwell on all day, every day. I have no idea what activity you might choose, but I suspect that if you thought about what you might do if you didn't have a worry in the world, something will make you smile...then do it.

 

My son had a hard time at first, accepting that he had the right to throw himself into something he enjoyed. Somehow it seemed like ignoring the hard work he must do to recover. It turned out to be more useful than all the ruminating on how to get better.

 

So many of my son's capacities that were impaired (even at a lower dose than he is on now) have returned. Yes, the slow taper, long holds, occasional re-instatements, and healthy living were critical, but going after joy while still withdrawing has helped him beyond what he would have thought even remotely possible.

 

People do get off this crap and recover. Please let me know if you have any thoughts on what will help.

 

Be well,

Ed

[Nikki]

This may sound silly and I don't mean to disregard any of the problems you have experienced or even your doubt.  Doubt and despair are a huge mental/emotional factor in tapering.  It affects all of us.

 

What I am suggesting is possibly trying to change your mind-set.  You know, "I can do this, I am doing this."  "There is not doubt in my mind and I will attain my goal of getting off Zyprexa." 

 

Montel Williams says "Mountain Get Out of My Way."  It is a way of being forceful with thoughts of success and overcoming.

 

Sometimes this practice, prayer and talking to others is the best medicine/recipe for following through.....

 

Please don't misunderstand, if you have ever read my posts in the early morning when my anxiety gets the best of me, you would never believe that I do practice the positive affirmation route It just doesn't  work in the wee hours of the morning

[SorrowExpert]

Thanks for the replies and encouragement, everyone. Things seem to have been getting better in the past few days (been sleeping OK and getting some exercise), so I will try to stay positive and hang in there!