success ☼ Tryingtohavehope: off Latuda

[TryingtohaveHope]

 

Success story:  trying-to-havehope-off-latuda-october-2015

 

Hello everyone.

First off I want to say that I know this site is largely about antidepressants and my latest experience is about an antipsychotic but I could really use the support, guidance and insight that you might have.

 

I'm going to try to make this as cLear and short at possible. I've always had depression and I've been on and off antidepressants since I was a teenager. The side effects not being worth the lil they did for me was always why I got off. Well I hadn't been on for 4 years and I just got tired of my depression again. I have ptsd and am in therapy and I thought it would help with the stuff it was kicking up. I have pcos and I told my psychiatrist that I had mood swings. And I should also note that I went to see him the year before and he prescribed me lamictal but I got so scared by the side effects I didn't take it. A year later around the same time (winter/spring when my depression gets worse) I went and he diagnosed me as bipolar still and gave me Latuda.

 

I took the Latuda for 5 months. I wanted to get off of it cause I really couldn't cry on it and I felt so blah about everything. Seemed hard to get interested in anything. Well ironically the day I talked to my pdoc about it...with him obviously not supporting me getting off cause he told me I won't live a quality life without meds...I had some anxiety that was triggered by something but it was electrified. I had never experienced anxiety like this.

 

I was so scared. That weekend I had mood swings and horrible anxiety and I started the taper. I was on 60mg of it. He originally told me if I wanted to come off just go down half for a week and stop. WRONNGGGG. This was the beginning of the most horrible time in my life.

 

This happened at the end of august. What happened going off this med...first the horrible electrified anxiety and mood swings. Then...the depression. I have had depression my whole life. This depression has been worse than anything I thought was humanly possible. The mood swings. I don't understand how going off a med could do that. My perception has been off which I can't really explain. I have had nightmares. It seems like this med distorted my memories (can it even ******* do that???). I'm so scared all the time which I guess is anxiety. My concentration is horrible. I'm obsessive. OH YEA. I completely lost my appetite with the anxiety and lost 30 pounds in 2 and a half months...

 

I have been wondering if I will be forced to go back on meds. How could I manage (hard but was still doable) without meds for 4 years and have this experience and feel so ready to end my life. Between him telling me I can't have a quality life on meds and reading so many experiences of people on meds....it's like what's the point? Will I ever be able to go back to my old depressed self? I used to be able to binge watch tv and enjoy food at least. Will that happen again? I know no one can really anwser these questions right.

 

I have lost so much hope. I don't know if I'm coming or going. I feel like I've been traumatized by this experience. I don't mean to sound dramatic but I really do. How can a med randomly do that and the taper cause all this? I feel like it attacked me. And I am obsessed with researching things online which makes things worse. Can you live well without meds with depression?

 

Also, how do you stop hating yourself for going on meds? I keep thinking please turn back the time. Please god. Why did I do this to me? I knew meds sucked. Why would I think this time they would help? How could I be so niave. Now I'm stuck.

 

Oh and by the way. I ended up going to 40mg for 2 weeks then 1 week 20. Probably still too fast but the med was causing so much **** and I thought I would get immediately better off. It's been 2 months being off and I'm still off. My sleep is now normal. The electrified anxiety is gone but now I'm scared a lot with random terror feelings. The depression has improved but still feels worse than before. I cry all day every day. Eating has improved but not 100 back to normal.

 

Any tips. Insights. Support. Oh and I take vitamin c, vitamin d, and I read on here to do magnesium so I do that at a low dose too.

 

Even if all you did was just read this...thank you.

 

Edited July 26, 2020 by ChessieCat
added success story link

[ChessieCat]

Hi TryingToHaveHope,

 

Welcome to SA.  Great to see that you included your drug history in your signature.

 

It would seem that you have tapered very quickly.  10% tapering of the current dose is what is suggested on this forum  I'm listing some links below that you can check out.

 

Someone with more knowledge should be along soon who will be better able to advise you.  Please don't take anything else until you get some advice.

 

This explains simply what is happening:  Brain Remodelling

 

Video:  Healing from Antidepressants:  Patterns of Recovery

 

Why taper?

 

About reinstating and stabilizing to reduce withdrawal symptoms

 

Why taper by 10% of my dosage?

 

Tips for tapering off lurasidone (Latuda)

 

I hope these help.

 

CC

[brassmonkey]

Hi TTHH-- welcome to the group, I'm so glad you found us. ADs or APs we work with them both so not problem there.  There is plenty of hope that this will have a good outcome. I can tell you right off that most of what you're feeling is probably WD Syndrome from tapering off way too fast.  CC gave you some very good links about how to taper off, and one about how to go back on, which is what I suggest you do.  Because you have been off for several months it would not be a good idea to go back on at a full dose, but if you were to start taking a very small dose of say 5mg it will probably really help calm down the symptoms you're having. Give that several weeks to stabilize and then we can talk about starting a slow taper to get you off of this stuff in a much more controlled/comfortable fashion.  Doing a slow taper will also give you time to learn some nondrug coping strategies for dealing with the anxiety and depression.

 

Here is even more reading you should do:

 

What is withdrawal syndrome? 

[TryingtohaveHope]

Thank you Chessiecat. I just looked through those things. Very interesting.

 

Thanks brassmonkey. I appreciate your advice. I will think about it but I can tell you that the idea of going back on horrifies me. I hate to admit this but I read about tapering slow before I did it but I was so so scared I did it anyway. The meds were causing the electrified anxiety and mood swings and I thought I'm fucked if I'm on or off how bad can tapering fast be...Guess I was wrong. I don't know what would have happened if I just stayed on the drug and never went off. Maybe the anxiety would have subsided. I don't know. Going back on scares me so bad. But I will consider it. I read most of the link on reinstituting. I'll read it more in depth.

[KarenB]

Can you live well without meds with depression?

 

Also, how do you stop hating yourself for going on meds? I keep thinking please turn back the time. Please god. Why did I do this to me? I knew meds sucked. Why would I think this time they would help? How could I be so niave. Now I'm stuck.

 

Hello HTHH,

 

I could have written th0se words myself when I first came to s/a.  At the point you're at now there are so many realisations and thoughts that race round and round in your head.  It's a big shock to realise your position and you'll go through so many emotions as you process it all.  It's hard.  But you'll eventually work your head around it, and things will start to work out for you.  You won't be in this place forever.

 

I believe you can live well with depression and without meds.  In fact I think you can live better.  Because meds only mask problems.  You as a person with all your strengths and connections can heal and manage.  Anatomy of an Epidemic by Robert Whittaker discusses how those who use no meds have the best long-term outcomes.  Well worth a read. 

 

And rather than hating yourself you might be better served hating the fact that our society seems to offer not enough real help to those who need it, and offers drugs far to readily to those who don't need them.  You didn't invent these drugs.  You were in a desparate place and someone offered you a 'way out.'  You live in a society where this is considered a good idea.  All of us here are in this position, and none of us are to blame. 

 

I've also struggled with depression my whole life and like you the worst times have been after I started meds and during w/d.  I've been at rock-bottom a couple of times, with all my hope gone - utterly desparate.  But now, after learning how our brains can heal and how our souls can live and overcome and manage depression when we need to - I have hope again.  I'm going to be okay - and you can be too.

 

You have so much more strength in you than any doctor will give you credit for.  You are literally a 'force of nature', and you can get through this.  So start digging in, finding those parts of you, learning how to stabilise.  It's not easy, but it can be done.

 

Wishing you strength,

KarenB 

[TryingtohaveHope]

Thank you so much for your kind words KarenB. It means a lot to me. I hope I get through this. I hope I can live an okay life and come to terms with my life and what I am contending with. I know I'm experiencing a lot of bitterness right now too because I know there are people who don't ever experience this or mental issues at all. I need to work on acceptance I suppose. I tied to read anatomy of an epidemic but I was too anxious and I scimmed through it and it really scared me and made me feel more hopeless.

 

I also am confused about what's wd symptoms and what's me. I hope I sort out these emotions but I also think I'm obsessed with what has happened and am now hyper aware of every negative emotion.

 

Thank you again for responding!

[PoetJester]

hi tthh

 

I would stay off the meds if at all possible.  I am not sure what BrassMonkey is talking about, but i would just be thankful that you can at least get sleep.  i have been off my anti-psychotic for almost 2 years now and my sleep totally screwed up.  I have terrible insomnia now after being acclimated to the pills for so long.  They had basically become a sort of sleeping pill.   i look horrible (huge bags under my eyes) and trouble with my memory and concentration.  I was on Zoloft and Zyprexa ( an anti-psychotic) for most of 15 years and like you I was happy, or at least content,  just to eat and watch t.v. and sleep all the time, in a word just vegging, but I knew I had to get off the meds. I hardly ever left my apartment, i wasn't exactly a shut-in, i just had no energy.  As regards your question about whether you should have just stayed on the med to avoid your current anxiety, in my case, the  anti-psychotics, which is just a fancy name for a tranquilizer, eventually lose there power to keep you sedated.  Towards the end of my 15 years i could hardly sleep even on the meds, i would have instant nightmares upon sleeping and knew i had to get off them.

 

For about a year and a half after i quit the meds, i felt that that i should maybe go back on them, a lot of us have that same feeling, it's like deciding between the lesser of two evils, life was empty on the meds., but i could kinda cope (in a slightly comatose fashion) and coast along, but going off the meds gave me back control of my life even if I was pretty damaged after the experience.  I would just take it day by day and try to look at the positive aspects of your recovery.  You are sleeping well, the anxiety is gone and you are eating better.  Going back on the pills can be a backslide and fill you full of regret.  I took a anti- depressant for a couple days last august as a sleep aide and all they did was make me dizzy and I threw them out.  Have faith in your own experience and be highly skeptical of any word that comes out of a psychiatrists mouth.  They'll fill you with lots of euphemistic and fatalistic garbage either, like they told you, about  how you need their pills to be happy or that you may have to take them for the rest of your life (Ugh!!!) .  I have heard it all too.  I have even been told to take these junk pills like a religion (group home staff).  Anyways, I hope and pray you'll have better days to come as you leave meds in your rearview mirror.

 

Peace

Derek

[TryingtohaveHope]

Thank you for your reply PoetJester. I know that I need to be grateful that I have some things going for me. I'm sorry that all those things happened to you. I know how precious sleep is. I don't know what I'm going to do. To be honest I've always told myself that I would try meds before I killed myself which is why I tried the latuda. Now I'm actually worse and had no idea it could be this bad. And the obsessing is so much worse plus all the horrible stories I've read online. I feel hopeless like there is no point so it brings me back to suicide and now I think well if I'm seriously about to do this, I should just try another med. You get how my mind is going in circles?

 

I'm really struggling with mood swings and constant suicidal ideation. I can not live the rest of my life this way. I thought I would one day find happiness, maybe get married, have kids. That all feels so gone.

 

I'm just struggling today. Thank you for your kind words.

[KarenB]

If nothing else, time has a way of shifting us into better places.  Sometimes we just have to hang in there for a bit more.  Usually when I've found myself out of a real bad place, there is no particular reason why it got better.  And so I came to see that sometimes I just have to hang on, wait for the shift. 

 

Sorry you are struggling today, and many days. 

 

Time to read some good stories?  http://survivingantidepressants.org/index.php?/forum/28-success-stories-recovery-from-withdrawal/

 

And maybe read about windows and waves for reassurance that things do continue to shift and change.

 

You are not alone in this,

KarenB

[PoetJester]

Hey HopingtoHaveHope

 

Obviously, don't try suicide.  God loves you and knows we don't always have great choices handed to us in this life and that sometimes it can be a real raw bargain.  Most of my adult life played out like a sci-fi dystopia, like Huxley's Brave New World, where almost every day from 1998-2014 consisted of me merely gorging on  food, drinking coffee and smoking while staring at the t.v. and then taking my pills before bed and sleeping for 9 hrs. plus a 3 hr. nap later in the day.  No friends, no relationships, no social life whatsoever, just me and my cat and my pills in a small apt. all day every day.

 

About hopes for a family, I can relate.  My one abiding goal my whole life was to find love and here I sit at 43 without so much as a date in 15 years let alone any sex in that time.  Outside of a few brief, somewhat uncouth, relationships in college, my romantic life has been non-existent.  When, after being in hibernation for 15 years on the pills, I was able to withdraw from them (In Feb 2014, read my intro if you're interested), I started feeling like a man again finally,  I began writing seriously and started walking daily and biking all over and lost 45 lbs. of weight I had put on from taking the pills. Then, in July 2014, I  fell in love with the new store manager at the major grocery store where I shop and after leaving her a couple poems of admiration, was turned down.  She has a serious boyfriend.  Oh, the tears.  They came down everywhere.  In my apartment, it seemed like I could make chicken soup with 4 thighs and a pot of my tears.  On the walking path near my apartment,  people passing me would have concerned looks on their faces as tears streamed down my face.  Part of it was obviously was that I was crushed and part of it was just feeling useless as a poor man and an unpublished poet in ill health with the insomnia ravaging my competency and powers of concentration and my looks.  It just felt and sometimes still feels, like my life is ending before it's even fairly begun. 

 

It it helps, we could start chatting on this website.  Just hit the "send message" button if you look at my profile page.  I would love to send you some of my poetry.  It's mostly quite funny stuff.  A couple of fellows from this website have really enjoyed the poems I have sent them.  I know that being damaged by these pills is not funny at all, my health and looks are going down the sh*tter due to the insomnia, but I still try to make the best of it when I can.  To be honest though, even though I write in a pretty upbeat tone, I have a lot of very trying and supremely frustrating days, these days.  Some days I don't want to go on at all.  They are especially bad when I have to function on 2 hours of sleep for the day. It's not that I am exactly suicidal, but when nothing goes right for me either in love or fixing my health or in moving out of this apt. that depresses me to no end and that I have been trying to leave for 9 years, sometimes I just want to quit.  No one seems to hear my complaint, but God still cares and I try to move on and keep myself busy and hope there will be better days to come.  Anyways,

 

Peace

Derek

[TryingtohaveHope]

Thanks KarenB. I will look at both those links. Probably tomorrow. I hope that I get out of this. I think I'm also very discouraged because I already had mood swings and depression before the med and had hopes and dreams of being without it and now I'm at a place where I'm begging to go back to that. So it's like what, this is my life permanently??? That's all I got? And what if this change is permanent and I dont go back. Even if I did I think the lack of hope changes things drastically. I can't even daydream because it makes me sad. I used to daydream all day about having a good life and now it hurts to do that.

 

PoetJester thanks for your insights. You have really been through it. You are really brave and I admire that. I know that you're saying things are ebb and flow and you gotta hang in there like what KarenB is saying. It's hard right now. That story about the lady at the store breaks my heart. I hope you find love, I hate to hear about people hurting. I read your intro and I loved the poems at the bottom! I used to write poetry too but only of the depressing variety.

 

Thanks again for the replies. I am going to go to bed. I wanted to say something else but I'm exhausted. Just cried all day today, really tires me.

[AliG]

TryingtohaveHope,

 

I can understand, that you would want to stay off the drugs , but a small reinstatement could soften some of your withdrawal symptoms , and make life a little easier. Then you could taper slowly after a period of stabilization. At least, have a think about it and read this link  :

 

http://survivingantidepressants.org/index.php?/topic/7562-about-reinstating-and-stabilizing-to-reduce-withdrawal-symptoms/

 

In the meantime, this would be good to read , as well.

http://survivingantidepressants.org/index.php?/topic/1112-non-drug-techniques-to-cope-with-emotional-symptoms/

 

Best wishes,

Ali

[Altostrata]

Welcome, Tryingtohavehope.

 

Please consider reinstating a very small amount of Latuda, perhaps 5mg, as brassmonkey suggested.

 

You have been on and off many psychiatric drugs. Over time, going on and off drugs makes your nervous system susceptible to adverse reactions.

 

Adverse reactions are dosage-related. It is possible 5mg Latuda will stabilize your withdrawal-plagued nervous system without causing the adverse reactions.

 

Then, later on, you might taper by tiny amounts.

[TryingtohaveHope]

After writing this I am going to put a trigger warning up...it's morbid and sad and don't read it if you don't want to.

 

It has been a while but I'm really struggling. I think I haven't wanted to come back on here because I wanted to act like I'm more okay than I am or something.

 

I can not reinstate the medication because I threw it all away. Maybe I should not have done that. I cancelled my last appointment with my psychiatrist and to be honest I think it would be really harmful for me to return because he just knocks me down and makes me feel so bad and I know he would be condescending about me wanting the latuda again.

 

The other thing is that the latuda was causing **** like the electric anxiety. What if I went back on 5mg and it got worse.

 

At this point to be honest I am considering trying something else. I don't know what to do. I actually went to a gun store and looked for a gun and had plans on getting one by the end of this month. I am at that point. And it scares me and makes me so sad. I want to live!!!!!! I just don't want to live in emotional pain all the time. It seems like this whole experience has literally changed me. What if I'm not experiencing withdrawal anymore and I'm just unable to cope with my old self again after being numb for 5 months? Even all the obsessive researching I've done about mental illness makes me feel like my life is hopeless. I've experienced depression since childhood, how could this change for me? I want to be okay.

 

He offered me lamictal before I left and I'm considering asking for that from someone else. I don't know what to do. I want to still buy the gun and then try more meds and then if that doesn't work just be done. Why do psych meds seem to work for some people? Why can't I even be thay person? What am I going to do. I don't know what to do. I feel like I won't be alive by Spring. Some people can spend their entire lives in pain, I know I cant. I'm really trying though.

[apace41]

Trying,

 

I can spend the time on this post trying to tell you all the great things you have to look forward to in life, and that the ideations you are having are only because of a too rapid withdrawal from the medicine, but before I do anything I must tell you that we are an internet site and wholly unprepared and unable to deal with anyone who is seriously contemplating suicide.  If you are serious, and looking into buying a gun is enough to make me take it very seriously, I can't stress enough that you need to reach out to your local suicide hotline.  They are professional in dealing with people in the darkest of dark places.  We can only provide support and ideas regarding getting of medicines as safely as possible and minimizing the harms done by these medicines.  Your message is alarming and we take it seriously.

 

You DO have plenty to live for.  You are only 28 and this will get better.  Read through the success stories here http://survivingantidepressants.org/index.php?/forum/28-success-stories-recovery-from-withdrawal/.  Plenty of people have walked in your shoes before and have made it to the other side leading happy and productive (and married) lives.

 

But please take it seriously as well and if you are seriously in that bad place, call someone who can help you.

 

Best,

 

Andy

[TryingtohaveHope]

I apologize. I didn't mean to make it seem like I was putting you guys in a place to help me with my suicidal stuff. I know no one can save me. I do have a therapist I talk about this with. She doesn't know I've looked into buying a gun though. Im just lost as to whether or not trying anothet med is a good idea. But I guess thats not something I can ask for opinions for on this site caue I know everyone is struggling on this crap. I find it hard to figure this out. Dont know my next step. Anyways, thank you for your suggestion and kind words.

[apace41]

So, you have a therapist you talk to for help and a psych who does nothing but prescribe?  The medical model in the US (and elsewhere) is so f--d up it continues to shock me.  Does your psych have any idea about who you are and what you feel?  Or does he prescribe in a vacuum?  Based on what you've written so far, it might be a good idea for you to consider looking for another psych who has (x) a better bedside manner and (y) some knowledge of tapering off meds.

 

Don't get me wrong, Trying.  We will give you our thoughts on "other meds" and getting off the one you are on.  We just want to make sure that if things are escalating and self-harm is in the picture that we advise people to do something other than post about it. 

 

Our general experience is that it is rare that going on another med is going to help someone who is in withdrawal from one med.  The better course is usually to work with the single med and get to a point of stabilization on that med to prepare for a taper off.  Reasonable minds can differ about whether or not to go back on a med, but that is the one way that has been demonstrated to alleviate withdrawal symptoms.  Hence the recommendation for a low level of the med to help stabilize.  It seems pretty clear that you are having serious catastrophic thoughts and those are a function of the withdrawal process. 

 

You can get through this, Trying.  It is hard but you can do this.

 

Best,

 

Andy

[KarenB]

Hey Trying,

 

There have been times in my life when I could have written much of your post.  I've had waves of depression in my life since I was a child, and I've spent long periods feeling utterly hopeless.  I felt I'd tried so hard, tried all the things to get better, and yet I still felt so awful.  I couldn't see a way out, and I remember wanting to be nothing. 

 

I know you're hurting so much right now, and I know you probably can't see a way out of this.  But it's a 'looks can be deceiving' situation because even though you can't see it, there is healing that can happen for you.  The meds cause us complications and slow us down, but we can still get there.  Healing can come to us in ways we'd never expect - so hang in there.

 

For me really started a couple of years ago when I read some books my husband had bought.  In an Unspoken Voice:  How the Body Releases Trauma and Restores Goodness by Peter Levine, and In the Realm of Hungry Ghosts:  Close Encounters with Addiction by Gabor Mate.  They also have a lot of talks on you-tube.  They gave me hope because they explained how healing and change can physically happen in our brains.  Before that, I always believed I was broken the way a shattered glass is broken.  But I was wrong.  I still had my strong self right in the heart of me. 

 

I started creating 'new' brain pathways of hopefulness, goodness, trust etc.  And slowly, it worked.  I kept seeing my counselor, cause there are always bumps in the road.  I tried to build goodness into my life - little bits wherever I could get them: whole foods, yoga, dance, connecting with close friends, writing my journey...

 

And I really believe you still have your strong self and heart too - everybody does, just sometimes we lose sight of ourselves.  It's not easy, the world's a frigging tricky place, but healing does happen, and you can start to get bits of it.  And those bits of it will begin to build together into stronger healing. 

 

I agree with Andy - if you're in that real hard place where you can't manage it yourself at this time, call the helpline.  Call your counselor - can you see her regularly?  When I was in my danger times, I was seeing my counselor twice a week, just talking, crying, getting the connection and care I needed till I came through it.  You're really precious, and you deserve all the care in the world - no one is meant to get through this alone.  Reach out to people till you re-find your strength and are more steady and have more of that hope in your heart. 

 

You don't always need to know the next step - reaching out to someone is a good start, and from there you'll just do one step at a time. 

 

If you want to read my story in more detail (i.e from the sad/hopeless posts at the start to the way more hopeful posts at the end) please feel free - the link is in my signature.  I write it because it helps me, and because I hope it can encourage other people. 

 

I'll be thinking of you, please let us know how you're doing,

KarenB

[bubble]

I took the Latuda for 5 months. I wanted to get off of it cause I really couldn't cry on it and I felt so blah about everything. Seemed hard to get interested in anything. Well ironically the day I talked to my pdoc about it...with him obviously not supporting me getting off cause he told me I won't live a quality life without meds...I had some anxiety that was triggered by something but it was electrified. I had never experienced anxiety like this.

 

I was so scared. That weekend I had mood swings and horrible anxiety and I started the taper. I was on 60mg of it. He originally told me if I wanted to come off just go down half for a week and stop. WRONNGGGG. This was the beginning of the most horrible time in my life.

 

This happened at the end of august. What happened going off this med...first the horrible electrified anxiety and mood swings. Then...the depression. I have had depression my whole life. This depression has been worse than anything I thought was humanly possible. The mood swings. I don't understand how going off a med could do that.

 

What you are describing Trying is classic withdrawal syndrome.

 

ChessieCat posted  a link to the thread which gives the answer to your question of how going off a med could do that. I will copy it here for you. there is so much information to take in right now for you so you might have overlooked this one. For me it was the key in starting to manage my life and my drug situation properly and spare myself of further suffering. Yes, as you have experienced taking drugs can affect us in all sorts of negative ways but stopping them abruptly makes everything much worse. Even if the drug wasn't helpful.

 

A lot of people, including healthcare practitioners; in fact, I guess, most people-- are operating from entirely the wrong paradigm, or way of thinking, about these meds. They're thinking of them like aspirin--as something that has an effect when it's in your system, and then when it gets out of your system the effect goes away.

 

That's not what happens with medications that alter neurotransmitter function, we are learning. What happens when you change the chemistry of the brain is, the brain adjusts its chemistry and structure to try to return to homeostasis, or biochemical and functional balance. It tries to restabilize the chemistry. For example: SSRI antidepressants work as "serotonin reuptake inhibitors." That is, they cause serotonin to remain in the space between neurons, rather than being taken back up into the cells to be re-used, like it would be in a normal healthy nondrugged brain. So the brain, which wants to re-establish normal signaling and function, adapts to the higher level of serotonin between neurons (in the "synapse", the space between neurons where signals get passed along).

 

It does this by removing serotonin receptors, so that the signal is reduced and changed to something closer to normal. It also decreases the amount of serotonin it produces overall. To do that, genes have to be turned on and off; new proteins have to be made; whole cascades of chemical reactions have to be changed, which means turning on and off OTHER genes; cells are destroyed, new cells are made; in other words, a complex physiologic remodeling takes place. This takes place over time. The brain does not grow and change rapidly. This is a vast oversimplification of the amount of adaptation that takes place in the brain when we change its normal chemistry, but that's the principle.

 

When we stop taking the drug, we have a brain that has designed itself so that it works in the presence of the drug; now it can't work properly without the drug because it's designed itself so that the drug is part of its chemistry and structure. It's like a plant that has grown on a trellis; you can't just yank out the trellis and expect the plant to be okay. When the drug is removed, the remodeling process has to take place in reverse. SO--it's not a matter of just getting the drug out of your system and moving on. If it were that simple, none of us would be here. It's a matter of, as I describe it, having to grow a new brain. I believe this growing-a-new-brain happens throughout the taper process if the taper is slow enough. (If it's too fast, then there's not a lot of time for actually rebalancing things, and basically the brain is just pedaling fast trying to keep us alive.) It also continues to happen, probably for longer than the symptoms actually last, throughout the time of recovery after we are completely off the drug, which is why recovery takes so long.

 

With multiple drugs and a history of drug changes and cold turkeys, all of this becomes even more complicated. And if a person is started on these kinds of drugs at an early age before the brain has ever completely established normal mature functioning--well, it can't be good. (All of which is why I recommend an extremely slow taper particularly to anyone with a multiple drug history, a history of many years on meds, a history of past cold turkeys or frequent med changes, and a history of being put on drugs at a young age.)

 

This isn't intended to scare people, but hopefully to give you some idea of what's happening, and to help you respect and understand the process so you can work with it; ALSO, because you are likely to encounter many, many people who still believe these drugs work kind of like aspirin, or a glass of wine, and all you need to do is stop and get it out of your system. Now you can explain to them that no, getting it out of your system is not the issue; the issue is, you need to regrow or at least remodel your brain. This is a long, slow, very poorly understood process, and it needs to be respected.

 

When you have spent more time around here, you will see how Altostrata helped so many people redeem their lives from the clutches of these drugs. Now it's maybe just another opinion for you. That's why I added this smal explanation.

 

Welcome, Tryingtohavehope.

 

Please consider reinstating a very small amount of Latuda, perhaps 5mg, as brassmonkey suggested.

 

You have been on and off many psychiatric drugs. Over time, going on and off drugs makes your nervous system susceptible to adverse reactions.

 

Adverse reactions are dosage-related. It is possible 5mg Latuda will stabilize your withdrawal-plagued nervous system without causing the adverse reactions.

 

Then, later on, you might taper by tiny amounts.

 

You were taking 60 mg. It's very unlikely that 5 mg would cause you to feel worse. But if it does, taking this little leaves you in absolute control of the process. Some people, including me, felt an almost instant relief upon reinstating our drugs. This doesn't mean going on drugs for life. It only means going off them permanently and in the way which is not damaging.

 

If I understand it correctly, after many SSRI throughout your teens, you were drug free for 4 years prior to taking Latuda for 5 months?

 

When I read this description of what it is that these drugs do to our brains (and that it can be reversed), I find it a lot more easier to deal with withdrawal symptoms and above all my hope has been restored. We do recover.

[Marsha]

Hey HopingtoHaveHope

 

Obviously, don't try suicide.  God loves you and knows we don't always have great choices handed to us in this life and that sometimes it can be a real raw bargain.  Most of my adult life played out like a sci-fi dystopia, like Huxley's Brave New World, where almost every day from 1998-2014 consisted of me merely gorging on  food, drinking coffee and smoking while staring at the t.v. and then taking my pills before bed and sleeping for 9 hrs. plus a 3 hr. nap later in the day.  No friends, no relationships, no social life whatsoever, just me and my cat and my pills in a small apt. all day every day.

 

About hopes for a family, I can relate.  My one abiding goal my whole life was to find love and here I sit at 43 without so much as a date in 15 years let alone any sex in that time.  Outside of a few brief, somewhat uncouth, relationships in college, my romantic life has been non-existent.  When, after being in hibernation for 15 years on the pills, I was able to withdraw from them (In Feb 2014, read my intro if you're interested), I started feeling like a man again finally,  I began writing seriously and started walking daily and biking all over and lost 45 lbs. of weight I had put on from taking the pills. Then, in July 2014, I  fell in love with the new store manager at the major grocery store where I shop and after leaving her a couple poems of admiration, was turned down.  She has a serious boyfriend.  Oh, the tears.  They came down everywhere.  In my apartment, it seemed like I could make chicken soup with 4 thighs and a pot of my tears.  On the walking path near my apartment,  people passing me would have concerned looks on their faces as tears streamed down my face.  Part of it was obviously was that I was crushed and part of it was just feeling useless as a poor man and an unpublished poet in ill health with the insomnia ravaging my competency and powers of concentration and my looks.  It just felt and sometimes still feels, like my life is ending before it's even fairly begun. 

 

It it helps, we could start chatting on this website.  Just hit the "send message" button if you look at my profile page.  I would love to send you some of my poetry.  It's mostly quite funny stuff.  A couple of fellows from this website have really enjoyed the poems I have sent them.  I know that being damaged by these pills is not funny at all, my health and looks are going down the sh*tter due to the insomnia, but I still try to make the best of it when I can.  To be honest though, even though I write in a pretty upbeat tone, I have a lot of very trying and supremely frustrating days, these days.  Some days I don't want to go on at all.  They are especially bad when I have to function on 2 hours of sleep for the day. It's not that I am exactly suicidal, but when nothing goes right for me either in love or fixing my health or in moving out of this apt. that depresses me to no end and that I have been trying to leave for 9 years, sometimes I just want to quit.  No one seems to hear my complaint, but God still cares and I try to move on and keep myself busy and hope there will be better days to come.  Anyways,

 

Peace

Derek

hi PoetJester and Latuda. I have been polydrugged with every class of drug for over a decade. I was in zyprexa and Latuda also and experienced the same symptoms. I am now tapering off geodon and am experiencing insomnia from being on the drug (it doesn't make me sleep anymore) plus insomnia from tapering. I wish I didn't have to take benzos to be able to sleep. I am almost jealous that you two are completely of drugs. I want to quit the geodon so bad but then I would be in your shoes and still be on the rest of my drugs. By the time I get off drugs I will be at the end of my life span. Im 62. Our years are 70 or 80 if by some special mightiness. At least you don't have drugs damaging your bodies anymore. Please try to stay off drugs and not despair.

[Altostrata]

Tryingtohavehope, do you have any withdrawal symptoms other than what you're describing as "depression"?

 

What does this "depression" feel like? Are there times in the day that it's worse and other times that you feel differently?

 

Do you often think about your PTSD?

[JanCarol]

Hey Trying - 

 

I don't have much to add to what Alto, Brass, Chessie, Karen and Andy have said here.

 

Maybe just to say it in a different way:  the electric shocks and symptoms you are having are because of withdrawal.

 

The clearest path to stop withdrawal is to take a small dose of the drug you are in withdrawal from.  Even if you have to go to the emergency room and tell them.  (think of it as: hair of the dog that bit you)

 

Alto recommended 5 mg.  It looks like the smallest available dose is 20 mg, if you cut those into quarters, you can take just 5 mg - so small a dose that you shouldn't get side effects from it.

 

When you take a reinstatement, if you feel better within 4 days, your symptoms are clearly a case of withdrawal.  Then, you can stabilize and taper later.  And you will feel so much better.

 

Please consider a reinstatement.  We want you off the drug, too - but safely.  Well.  Healthy.  Ready to recover.

[TryingtohaveHope]

I just thought that I would update this. It has almost been 2 months since I last wrote. I really have kind of argued with myself as to whether I should come back and update but I think it could be helpful to some people but also not helpful or hopeful but it is what it is. I think I am majority over the withdrawal. Let's say 90%. No windows, it's been pretty consistent I believe for the last month. Although I know I go through waves because that was the problem before I got on the meds anyways. I never experienced windows in the way they are described here I think. I have felt this for weeks but just wanted to make sure before I returned. I no longer have the terror. I realized this (this might be a stupid example) because I remember seeing the trailer for The Martian months ago and literally being frightened out of my mind, like I could jump out of my skin. I couldn't believe it. The other week I went and saw The Martian (to test myself) and was mostly okay. That's the other thing, I am going to the movies again. I eat most of my meals and have had cravings for food. Think I gained weight. I can partially daydream. My normal perception is back, I don't feel...weird. Hard to explain that. I have listened to music during night time and been able to cry and feel kind of comforted. The physically painful depression is no longer there. I am no longer obsessively obsessing like I was, looking up everything mental health and medication. Which is huge. I still can't stay off my phone for relief but that's its own issue. Also, my sexual desire has returned way more. Orgasms still a lil dull but I actually think that's due to depression. My sleep is solid and I am no longer having nightmares about the meds and just in general. Still having bad dreams (pretty normal I guess) but not nightmares. Can focus more on tv. 

 

I had to realize that this is a success story concerning withdrawal. But the truth is that I still remain suicidal. And I have had to actually realize that this is not withdrawal, it's because my depression is still there and the actual experience with the medication caused a great deal of hopelessness. And I feel like the experience with the medication was a trauma as well. It added to my trauma. I feel hopeless about life. I am going to counseling and getting active and taking vitamins. I also am in the midst of going gluten free. Trying not to consider going back on meds honestly (WHICH WOULD BE CRAZY TO DO AFTER ALL OF THIS, RIGHT). So I am trying my got damn best to move forward and hope that I can feel like my old self in some ways again (I think the experience changed me). But I am more than thankful that the withdrawal is gone. It was 5 months of fuckery and it makes me sad inside my heart that so many of you are still experiencing the worst of it. I DID get better. And I AM still working on mental health. And I DO have moments of peace.

 

So, hope this helps. Sorry if it doesn't. I just want to share where I am at. And I will make sure to update this again. I wonder if people get better or go back to their old selves and then never come back to update! Thanks for the support too. Kind words are still very much appreciated!

[Christian]

Thank you for updating. It is very kind of someone who is recovered to be caring enough to post an update in an effort to give others hope. I read your thread and am grateful. I also hope you can get through your other challenges you are facing.

[TryingtohaveHope]

My year anniversary is here. I can't believe this all started a year ago. I wrote my last update in February, but I can honestly say that it wasn't done then either. I can not explain it but there was a dimension to the depression and anxiety that was caused by the meds that did not go away until like May. Even my appetite was still weird but it had improved so greatly that it didn't seem like it. I would say my withdrawal lasted 8 to 10 months. Some of the things above improved.

 

I know that my diagnosis will never go away but I truly believe the experience I had with the medication forever changed me. I look back on this year and I can not believe it. I know it doesn't mean I lot when you are going through it but I think of all the people on here and how brave you guys are. How strong and courageous. Deciding every day to move forward despite. I cry a lot thinking about everything that happened and how even though I have greatly improved, I feel traumatized by the experience. Just rereading it above breaks my heart. I bet so many people get better here and never return to update because they never want to remember the experience again!!!!!!!!!!!! I saw a post I made on facebook when this happened and I put that God makes us suffer to become better people and ironically enough I have never believed in God less than after going through this last year. Thats bull. I feel like I can't talk to anyone about what happened cause no one understands. And I don't want to whine here because so many of you are still struggling. It is what it is I guess.

 

One thing that has not gone away is my ability to TRULY concentrate on television. I used to binge watch like 6 episodes at a time and I can't watch more than 2, and I am still distracted. I think it might be permanent. Or it might be the depression and inability to become engrossed in imagination. I don't know. I miss being able to watch tv.

 

I will say that I am still GRATEFUL that I am not experiencing what I was a year ago. And I send light and energy out to everyone here that things can greatly improve. Take care.

[scallywag]

Thanks for coming back to let us know how you're doing. I hope that sometime soon you'll be ready to post a success story in the Success stories forum.

[brassmonkey]

Hi Trying-- thank you for dropping in and telling us about your year.  You're right, most people stick around until they get to zero and then disappear. I can fully understand why they do so, because I'm rapidly approaching zero my self.  But it leaves us with a severe lack of understanding of what happens next.  I know their experience is quite different from the other members who are still in acute WD, but their journey isn't over.  There is a whole recovery phase to be explored and learned about so we can better advise each other.  We aren't automatically recovered once we are drug free and what we experience is totally valid and valuable. So any insight, ramblings or experiences you'd like to share are quite welcome. And if you just need to talk, remember we do understand.

 

Brass 

[TryingtohaveHope]

I came back to this site to actually ask a question about birth control.

 

I can't believe I thought one year was it. I will say that one year was the big hurdle but I don't think I truly understood the magnitude of the impact of this medication injury. I would say that the year was the milestone and it kept getting better and better and better. I am almost on 5 years ago that this happened and I am getting choked up reading everything and realizing that. I was told by my friends that they were sure I was ending my life then. I thought I was too.

 

There are two things that never went back to normal (and I also wonder if my birth control and hormones play a role in this). The way my anxiety manifests and my concentration which go hand and hand. I do believe that these experiences FOR SOME can permanently change some things but I do not see my story as not being a success. I sit here with tears in my eyes knowing that 5 years ago I thought a med withdrawal was going to end my life. And I made it through, with the help of you and an online community and just...I have no ******* idea. But I made it. AND YOU WILL TOO. YOU WILL BEAT THIS. I BELIEVE IN YOU. 

 

In case you are wondering, this is how I manage my mental illnesses now:

Mindfulness and aspects of buddhism: breath work, understanding that pain is inevitable and passes and really trying to lean in to moments lacking pain

DBT (which goes with above) (I did an intensive program)

I eat 3 times a day, nothing in between and I avoid white cane sugar desserts. 

I exercise daily

I do yoga, go out in nature

I go to therapy once a week, never stopped

Friends

Unstimulated time

Keeping stress at bay as much as possible (damn pandemic)

Structure, structure, structured days

I still don't believe in medication for myself. So, none of that. I am going to try some supplements for this hormonal stuff I have going on. 

 

Do I live some perfect life? No. Do I live the life I was living in November 2015, no. I started a business, have a girlfriend and try my best to truck through. Hopefully this post doesn't jinx that (haha, no...seriously *side eye*).  I try not to think about Latuda and what happened because I believe I added to my PTSD with this experience. As a matter of fact, that would be a lasting effect. Every time the fall comes I get memories of Latuda and become scared. Actually if I think too much about it at all. Very traumatizing. But I know that's just a trauma memory and I push through. Just thinking about it causes fear, it was the worst thing that ever happened to me but again, I made it. Have hope, please. YOU GOT THIS!

 

 

 

 

[Altostrata]

Thanks, Trying. 

 

Some people have bad reaction to hormonal birth control, other hormones, or steroids. Did this happen to you?

 

Please update your signature with the date you went off Latuda.

 

Because you're feeling better, I added our cheerful "here comes the sun" symbol ☼ to the title of your Intro topic, to show you're recovering.

 

Please continue to let us know how you're doing. I hope you will add your story to our Recovery Success Stories eventually!

[Altostrata]

TryingtohaveHope has contributed a success story here

 

As is our custom, I will close this topic now. Please congratulate TTHH in the success story topic.