acetyl Asenapine (Saphris) Withdrawal hell

[Petunia]

does any book talk about just how long and severe withdrawals can be and mention the windows/waves recovery? That's what no one can at all comprehend, how I seem to improve and then get hit like a truck.

I don't know, I have the R. Whitaker book, Anatomy of an Epidemic, and its very good at explaining the truth behind the development of psychiatric drugs and the rise of the psyche drug industry, but its not about withdrawal.  Some of the Breggin books are supposed to be about withdrawal and how to come off, but from reading the reviews, it seems they are not the best quality and there is only limited information in them about how to actually come off the drugs.  From reading the reviews, I got the impression that Joseph Glenmullens book - The Antidepressant Solution, may have some of the information you are looking for, but its related to antidepressant withdrawal.

 

I was thinking that if your parents were to read something related to the negative aspects of these drugs and started to understand why most doctors and psychiatrists are not the best people to help with tapering and withdrawal, you might get more support for your efforts at looking for help from forums like this.  I was reading some negative reviews of one of Breggin's books and there were several comments from people who have found this web site to be the most help they have found.

 

I'm glad your wave seems to be coming to an end, its a positive sign that you are having better weeks. From all the reading I've done here, it seems to be the way recovery happens, increasing windows and decreasing waves.  I don't think your recovery is going to take decades and once your nervous system stabilizes, you wont be suffering like you are now, through the rest of your tapering.  It still might take longer than you would like though.

[Altostrata]

I think you need to understand waves and windows, see http://survivingantidepressants.org/index.php?/topic/82-the-windows-and-waves-pattern-of-recovery/ Read it a few times, and whenever you start to wonder what's going on.

 

That you're having windows is a good sign. You need to learn patience during the waves, and to manage your emotional reactions to them.

 

I have faith in Dr. Purssey, please work with him.

[acetyl]

I've talked to Dr. Purssey and we're aligned again in our perspective to this whole ordeal.

 

I'm really sorry about my posts over the last few days, they are embarrassing, I just wasn't me at all, I was so extremely upset, agitated and sleep deprived and chose to vent it all out here. Apologies.

 

 Thank you Alto and Petu for being a voice of reason and rationality during that wave. I will commit to better controlling my emotions in the future. 

[WinningThrough]

How are you feeling, Acetyl?

 

I wanted to say you've no need to apologise for saying how you feel. We all need to let out how we feel. You shouldn't have to edit yourself. Just be whatever you need to be while you get through this. You're coping really well with a horrible situation and are a lot stronger than you think. I read somewhere on this board that this site isn't a Facebook. It's somewhere to get much needed support while travelling through the most difficult journey of your life. So don't suffer in silence. You're not alone.

 

I see it as a positive that you're getting waves and windows.

 

One of the hardest aspects of this thing we are all going through is the pressure to be well quickly. People who aren't going through it think we are somehow going to miraculously heal overnight and they can't understand the waves anymore than we can.

 

I try to push my healing but then I realise I have to respect my brain. I have to get out of the way and let it do its work.

 

I just wanted to say hello. I didn't want you to feel you couldn't post because you were feeling bad.

 

Take care and I'm wishing you continued healing.

[bubble]

Hi Acetyl,

 

I also want to echo what WinningThrough wrote. In my understanding this is one of the reasons this forum is around: to allow us vent and share the darkest moments of this journey which we cannot do on FB (and sometimes not even with our closest friends, family, etc.)

 

So absolutely no need to apologise. We have all felt like that at some point or th eother or are still feeling the same and it actually helps us to see this voiced.

 

Hope to hear from you soon.

 

best,

bubble

[lexicon]

Hello everyone ..

 

It is with a sad, and heavy heart, that I am writing this .. Acetyl has passed away ..He fought valiantly this awful fight with psyche drugs, and sadly he lost ..

Our respects to his beloved Mum and family ..

His name was Tim, and his story heart touching .. May he rest in eternal peace .. Ameen ..

 

My heart is broken ... The distraction that these meds cause He was only 25

 

Wishing healing blessings to everyone ..

 

Lexi

 

RIP Tim Nicholas

 Monday, July 14, 2014 at 1:31am

We will never forget you Tim...Your many cries for help and supportive comments to others.

 

Tim's story (He wrote this on June 7th, 2014)

 

"I was slapped with the bipolar label 3 years ago, like many of you I was just a very high achiever who put way too much pressure on himself and was very self critical. I was progressed through antidepressants, lithium, anticonvulsants and then following a painful breakup my psychiatrist decided to introduce the antipsychotic, Saphris. I started noticing side effects including poor memory, emotional bluntness and a bad tremor in my hand and decided it was time to give psychiatry the boot as it had done nothing to help me.I managed to get off most of them with minimal troubles (I had no idea about withdrawal and either cold turkey'd or did at most 2 week taper). But stopping Saphris caused the most horrific excruciating withdrawals imaginable. No one believed it was withdrawals. I started to deteriorate so rapidly I wound up in the psyche ward twice and was put on valium to try and calm me down.

 

Finally I stumbled upon the site survivingantidepressants.org and found out what had happened to me. Unfortunately when I tried to reinstate Saphris to hopefully stabilise, I had a seizure (hypersensitivity reaction) which resulted in another trip to hospital. I was given details by Alto Strata of a psychiatrist who is big on therapy and anti-polypharmacy. He is committed to getting me stabilised and eventually off all medication.

 

To try and reduce the withdrawal we started a low dose of a very old antipsychotic (Chlorpromazine). This has helped a tiny bit, but I'm still largely housebound suffering from 24/7 panic attacks and insomnia. I'm hoping with some more time things will calm down and I can then start a very very slow withdrawal from 40mg Chlorpromazine and 2.5mg valium. It has been the hardest battle of my life and I know I've still got a long way to go."

 

Tim's comments/posts in group:

 

(June 7, 2014): "I was SO desperate to find something to alleviate the withdrawal anxiety that I've tried basically everything out there. The following I reacted very badly to:- B Vitamins- D Vitamins- L-theanine- Phosphatidyl serine- N-Acetylcysteine- Naturopath concoction of herbs. The general consensus on forums boards of the only supplements that may help (or at least won't harm) are:- Fish oil- Vitamin E- Magnesium- Vitamin C."

 

(June 7, 2014): "I'm really really sorry for your suffering, particularly if you went as slow as a 2 year taper. It seems truly cruel that you should suffer so much when going so slowly. I'm in the exact same boat. I'm 25 and just prior to withdrawing I had the time of my life in Thailand. Now I've spent the entirety of 2014 housebound with horrendous withdrawal symptoms that show little sign of letting up any time soon. It sucks, I too feel like I'm going to lose what should be some of the best years of my life, along with my job, girlfriend, friends and a lot of money; it's f*cked up and we have no ability to ever reclaim compensation for what was done to us."

 

(June 10, 2014): "In general it's not recommended when tapering an AD. Your problem isn't a lack of serotonin, it's that your serotonin receptors have been down-regulated due to being oversatured with 5HT the whole time you were on the drug. They now need to detect that there isn't that overabundance of 5HT hitting them so that they start to upregulate. If you take 5HT you are again artificially boosting levels in the synapses. You may then find if you stop taking 5HT at any point in your taper, you will fall in to withdrawal syndrome. Are the migraines and dizziness whilst you are still on the AD or have they appeared now that you are tapering?"

 

(June 14, 2014): "Sounds like they threw every class of psychoactive substance under the sun at you Sarah, it's so very unfortunate but I think goes a long way to explaining why your recovery may be a long road. Stay strong, no one goes through this forever, Everyone does heal, even the crazy stories of people that ended up on massive doses of benzos, it took years but they healed and so will you."

 

(June 17, 2014): "Dropped from 2.5 to 2.25 diazepam. 8 days later started not feeling right, some heart palpitation. Now 11 days after feeling very spacy, dizzy, depressed and panicky  Don't know what to do, hoping it goes away.  It's unbearable today, I feel like I'm dieing. What should I do, updose again? I'm very, very scared and mum is panicking not knowing what to do with all my carrying on.

 

(June 22, 2014): "This has been the week from hell. I cannot imagine anyone feeling more mental pain then what my withdrawal induced brain has endured. It feels like it is firing 1000000x faster than it should, the anxiety is so extreme it is completely unbearable, and total insomnia at night. I have hardly been able to eat, dress myself or do anything. I don't understand what has caused this extreme spike at 5 months out, but I'm honestly fighting for my life every minute of every day.

 

I was on a very new antipsychotic called Saphris/Asenapine for 6 months. My withdrawal has been very messy, I honestly don't know how to explain it quickly. I have been admitted to hospital twice because of it, which resulted in continual use of diazapam for 4 weeks, so now I also have a 2.5mg valium addiction. Alto Strata recommended me a psychiatrist who is more understanding of withdrawal and is against polypharmacy. That psychatrist started me on a low dose of a very old antipsychotic called Chlorpromazine/Thorzaine to try and quell the withdrawal symptoms. However this didn't work really at all. So now I'm in agony and still taking 2 psychiatric drugs. I'm staring down what could be one of the longest roads to recovery imaginable.

 

I try to do a walk everyday, but anything more strenuous then that causes problems. It's hard to explain, but the anxiety I have is very atypical, there's no increased heart rate, no nervousness, no adrenaline dumps, nothing like that. It's 100% inside my head. If you imagine a sci-fi movie where the villian uses 'psychic powers' to make the opponent grab their head in pain, that is what it's like.

 

I really dont like the sound of brain injury. Physically there's not too much wrong with me. I'm fatigued from insomnia and a bit dizzy but otherwise in pretty good health. It might just be coincidence but I've found everytime I try to do more strenuous exercise, I've had a big surge in my anxiety/head-pain later that day and it typically takes a week for it to settle back down. It feels like I'm walking on egg shells, anything triggers me.

 

I agree in the sense that the brain's natural circuitry, receptor populations and signalling patterns have been severely compromised. But would like to hold on to the belief that this type of brain injury is recoverable from, as the neurons aren't dead or damaged beyond repair like a stroke victim.

 

I've found scientific studies that demonstrated significant up-regulation of serotonin receptors following prolonged administration of Saphris, so I am inclined to believe you Gillian that this could be largely an over saturation of the serotonin signalling pathways. I've tried melatonin for sleep, oops, won't be doing that again. Maybe I should think about putting together a strict diet that's low in tryptophan to try and reduce serotonin levels."

 

(June 23, 2014): "Wow your friend is so lucky Anna.... I think a large part of my severe reaction has been the fact I've been on and cold turkey'd off almost every class of psychoactive medication over the last 2-3 years. It's like when I stopped Pristiq 100mg, I had brain zaps and felt a bit funny for a week and then I was totally fine, yet some people suffer horrendously for years with Pristiq withdrawal. It's really just Russian Roulette with these drugs and the more you've been on/off the greater your chance of having a severe prolonged withdrawal reaction.

 

It's scary when you tabulate it all, recently did it in excel myself. I'm convinced now that every single time a drug is added & removed your brain becomes more and more sensitive till you have that severe withdrawal reaction."

 

(June 25, 2014): "Hi Eugene. I'm from Sydney too. Yes you've made a huge cut to your meds, if you start to feel at all abnormal (brain zaps, insomnia, highly emotional etc.) make sure to let us know ASAP as it may be necessary to updose and stabilise. As you may be aware psychiatrists are clueless about psychoative drug withdrawal and whatever schedule he gives you will likely be much faster than your nervous system can cope with. 

 

I think you are wise to 'comply' with your psychiatrist in saying that you are taking the meds, you want to avoid at all costs being admitted to a psych-ward. If the possibility exists to change psychiatrists I know a very good one who is pro-therapy and somewhat anti-medication. If you are interested feel free to PM me."

 

(July 5, 2014): "Sorry, I just need some support again   I feel like there's no evidence recovery from the harder neuroleptics (Zyprexa, Saphris) is possible. Everywhere I've just read stories of people suffering for 3,6,7 years with no let up. With Benzos it seems people at the most turn a corner at 2 years. I feel doomed, I had such a successful and promising life before trying to withdraw, I just don't know if I want to live with whatever is on the other side of this, especially if it's going to take a decade to heal.

 

I'm in the terrible position where I was tapered off by a Pdoc in 2 weeks, then tried to tough it out for 2 months. When I reinstated I had a serious hyper-sensitivity reaction that hospitalized me. So I'm basically stuck on the cold turkey road."

 

Scott Hart's Memorial for Tim (July 14, 2014 at 6 pm USA Mountain Time):

 

"So sorry to report we have lost Tim Nicholas. He gave his life in this fight with these Psych Meds. Tim attempted to take his life and slipped into a coma on July 11th, 2014 and passed quietly in the night about 7 hours ago [11 am MT]. Tim we all love you and your suffering was very real. You will be missed and we will remember you always. Tonights meeting we will remember Tim and help those who may be missing Tim as well. I am just so devastated and sad but mad as Hell at these Docs and these pills."

 

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  July 14
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  July 14
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[moodyblues78]

Rest in peace Tim. There is no more suffering...

[Petunia]

I will always remember your concern for others in spite of your own incredible suffering, such a sad loss.

Rest in peace Tim. 

[lexicon]

He is resting in God's loving arms ...

Away from suffering and cruelty ..

[mammaP]

Such a lovely young man, I am heartbroken reading this.

The suffering these drugs cause is criminal.

 

God bless. xx

 

Thank you Lexicon for sharing this news, it can't have been easy for you. xx

[bubble]

I feel priviliged and stronger to have met this beautiful and compassionate soul.

 

His last post on this site was a message of hope to a fellow sufferer. To honour his memory, we will continue to spread that message and support each other.

 

Thank you for everything Tim and rest in peace.

[Altostrata]

I am so very sorry we have lost him.

[WinningThrough]

Rest in peace, Tim. You were so brave.

[dalsaan]

Rest in peace Tim. You were so giving to others despite your own suffering.

The forum has lost a friend.

 

Dalsaan

[alex]

What can I say? This is horrible.

Rest in peace, this young boy.

[johnson]

Thank you for the support.

 

This anxiety is just so intense and it doesn't come and go in waves, it is just absolutely constant. I know some of you on here have been in withdrawal for years and years and I just can't stand the thought of feeling like this for that long, it will kill me. So scared

 

I'm looking in to supplements again (phosphatidyl serine, L-theanine, L-glycine) but typical Australia , nothing is available or it's grossly expensive.

 

This is so sad. It really hits home. I read the entire thread and saw a bit of his video on youtube. Maybe the video can be used to help others and help doctors understand what he went through.

It's so hard to believe this happened. I will be thinking of Tim tonight that's for sure.

I hope people will stop saying God only gives us what we can handle. Maybe it's true but in this case it's not.

There is a reason for everything

I think the support Tim got from the staff on this forum was incredible though.

 

Rest in Peace.

[alex]

 

I hope people will stop saying God only gives us what we can handle. Maybe it's true but in this case it's not.

.

 

 

 

 

Unfortunately, I must agree with you.

 

Peace to you all.

[Muddles]

This breaks my heart. I am so sorry he had to endure such pain.

 

I am thinking of his family.

 

You are at peace now.

[Muddles]

I have Just shown the video Tim made to my husband. After recent conflicts regarding my pychiatrists theory on drugs and discontinuation - this has changed his perception.

 

So thank you Tim. I hope this video will go on to help other people.

[moodyblues78]

 

I hope people will stop saying God only gives us what we can handle. Maybe it's true but in this case it's not.

 

 

It was not God who put him on those poisons. It was people who try to play God.

 

The poor kid had a horrible medical history. Someone should be taken responsible. His life was not easy but it had a meaning. Some come here to learn. Some just stop by to teach us something. We are here stuck with our problems. At least he has got peace now.

[Muddles]

We all know who is responsible. However big pharma and the 'legal' drug pushing psychiatrists will have it covered.

 

One day Tim this will all be recognised. We have to make it happen.

[WinningThrough]

Yes, we have to make it happen. The tragic loss of such a young, sensitive life makes me more determined. You are in my thoughts tonight, Tim.

[Karma]

I am also very sorry that we lost this young man.  His life had so much promise.

 

Rest in peace, Tim.  My deepest sympathies to his family and friends.

 

Karma

[lexicon]

Here is a profoundly sensitive, and beautiful poem by my favorite Indian Poet, Rabindranath Tagore :

In tribute to Tim Nicholas ...❤️

 

[btdt]

Today is the first time I read any of his posts... I watched his entire video not knowing he was the Tim who passed and answered one of his questions when searching for this video reportedly on his thread by a person who passed named Tim. 

 

So I meant him after he passed very odd how things work on sites like this. I often thought if i did not come back to a withdrawal support site because I passed that nobody there would ever know my end.  

 

I am curious who was aware he was here and reported his loss?  

I guess this is part of withdrawal support sites a part I don't want to get use to. 

My deepest sympathy to his family I am assuming one of his family knew he was here and informed the mods. 

Rest in peace Tim. 

[acetylsDad]

Hi all,

 

I am Tim's Dad,

 

I was only just directed to this site and Tim's words.

 

I thank you all so much for your support.

 

Myself and my wife were exhausted, we had tried everything we could,  it was just not enough for Tim.  We are devastated.

 

There is currently a Coronial Inquest into Tim's death.  His request was to not seek revenge, but to educate.  I am hopeful that you will all be encouraged to keep spreading the word.  I have made Tim's video blog active again for those who wish to view it. (Link earlier in this post)

 

Tim left a lengthy letter, which I would like (in part) to share with you.  I read this at Tim's service.

 

 

 

I'm not depressed, I don't have anxiety, I have a sensation so bizzare and so painful there is no word in the english language for it.

What I believe I have is a chemical firestorm going off in my brain caused by concoctions of psychiatric drugs being used and rapidly withdrawn from my brain.

24 hours a day it feels like my brain is on fire, like it is firing a million times faster than it should, it is excruiating.

What these horrendous drugs have done to my brain is incomprehensible,

 

I feel like a vegetable, most days I sleep only a few hours, I awake in a state of shock so severe I struggle to move, it takes all my willpower to change my clothes and shower, making a meal for myself is virtually impossible.

My brain feel like it has been shut down, I can't think or function on any level; I can coherently converse, but it is a struggle.

I have been living in this state now for 5 months straight and things just haven't gotten any easier.

 

I've meditated and practiced mindfulness and ACT everyday for 3 months now, I wish I could say it has helped, but not for me.

I believe ACT is fantastic for depression and generalised anxiety, I truly believe it would have revolutionized my thinking and given me a long and prosperous life if I had found it before I became an experiment of psychiatric medication.

I have no idea why a new major tranquilizer antipsychotic was prescribed to me at the highest possible dose, this Saphris is so potent, it's affinity for so many receptors dwarfs that of even Zyprexa. 

It dumbed my intelligence and gave me a tremor so bad I couldn't hand write, but the real dilemma was this extreme pain in my brain any time I tried to quit taking it.

It was immediate, I stopped taking it in December 2013 and was hit with this hideous brain pain, panic and insomnia; I caved in and started taking it again and the sensation went away and I could sleep.

I tried halving the dose in January 2014, the exact same consequences were experienced.

I did a 12 day taper off it starting Febuary 2014 and immediatly upon ceasation of the drug the same pain was experienced and it  magnified and magnified to an intensity level that has left me everyday begging to be freed from this life.

 

There is NO WAY these sensations, this insomnia and pain would have manifested otherwise, no way at all, the cause-effect relationship is so clear and the pain is so intense, I would beg for it to be replaced by the worst anxiety I had experienced in my life prior to it, that would be paradise compared to the pain I'm constantly in.

 

Celebrate my life and the wonderful things I achieved, remember me as the young child who use to enjoy smelling flowers, the talented and succesful gymnast, the high achieving academic.

I hope my life can make a difference to others, I hope through my sacrifice others will be spared psychiatric medication and can be educated on mindfulness and truly productive ways of living a rich and fulfilling life.

 

Anyone with depression or anxiety can be saved, they are still functional, they just have a fog that needs to be cleared and can be through the great therapy and techniques that exist in this day and age.

I've been rendered non-functional, I've tried really, really hard, I have strived to do everything in my power to get through this experience, but just cannot find the stamina to push on.

I'm exhausted, I've told myself over and over again, just another week, just another day, but it has become a sympthony I just can't keep singing.

No one can relate or even remotely begin to assemble the agony I'm in, it is truly a pain like no other and what I want now more than anything is just to be free.

 

I love you all and will watch and guide all of you in this life to live to your full potential.

 

To friends, you truly have been a fantastic bunch, so many great memories, so many fun times. I'm seriously so glad for the time I had with each and every one of you, keep having fun and pursuing what makes you happy in life, that's what is so much more important above anything else.

 

You can all keep going I know you can!

 

 

 

 

 

Tim’s message is clear…..  He wants us all to embrace non-pharmaceutical solutions to life’s ups and downs.

 

In your service book today is liftout with a web link to Dr Russ Harris’s web site.

Russ has written a Book called  “The Happiness Trap” It is the book Tim believes would have carried him through,  had he the chance to practice it’s theory 12 months earlier.

Please have a look.  It is not just for those who are facing life’s hurdles.  It gives you tools to deal with everyday life.  Tim asked me to share this with you.

 

Tim you have left a void in my heart that will never be filled, no Dad could be prouder,  I will honour your wishes and our family will be strong.  Tim, wherever you are…… keep doing the best you can with what you have. 

 

Edited August 2, 2022 by ChessieCat
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[mammaP]

Hello Tim's dad, I am so, so sorry that you have lost your son in this way. My heart goes out to you 

and Tim's mum.  I can only imagine what you are going through. 

 

I can't find any words to express how much I feel for you and your wife, My heart is breaking for you. 

 

Thank you for sharing his letter with us. 

[dalsaan]

Dear Tim's Dad,

 

I'm so very sad for your loss and my thoughts are with you and your family. Tim was clearly a thoughtful and caring young man with a generosity of spirit, this is obvious from his words and his engagements with others who were suffering.

 

I would also like to thank you for coming here at a time of heart break to share Tim's final words.

 

Dalsaan

[mlrp]

I wish to also extend my heartfelt condolences to Tim's family. Tim's Dad, your generosity and courage in visiting and sharing here are testimony to Tim's own amazing spirit. 

[WinningThrough]

Hello Tim's Dad. I am deeply sorry for your loss. Tim was clearly a beautiful soul. Please extend my thoughts to your family.

[Karma]

Tim's Dad,

 

Thank you so much for sharing Tim's letter with us.  As Tim wished I hope that his words can help to educate and create change.

 

Once again, my deepest sympathies to you and your family.

 

Karma

[Muddles]

My thoughts are with you and your family Tim's dad.

[lexicon]

Dear Mr. Nicholas,

 

I humbly and respectfully offer my deepest felt condolences to you, and your family, for the loss of your beautiful son Tim ..

He touched the lives of so many here, with his comforting and caring spirit .. He will not be forgotten ..

 

" Let love melt into memory, and pain into songs.

Let the flight through the sky end, in the folding of the wings over the nest ..

I bow to you, and hold up my lamp, to light you on your way"

 

Lexi

[btdt]

To Tim's father. 

I am sorry this is how Tim's life ended. I hope peace will one day come to your and your wife's hearts.  I hope there is change made so no others suffer as Tim did. My thoughts and prayers are with you now and in the future. 

peace 

[Altostrata]

Thank you, everyone, for your caring for acetyl.

 

My heartfelt condolences to Tim's father and family.

[JanCarol]

RIP dear Acetyl Tim.  I started this thread without knowing what happened.  Such a bright young life, too short, too soon. 

 

As said above:  someone needs to answer to the crimes committed against this young man.