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psupens: Zyprexa withdrawal while already diagnosed with cerebellum atrophy


psupens

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Hello, everyone. I have been reading everything I can on Zyprexa tapering, withdrawal etc.

 

Our story is different. My husband was diagnosed with a degenerative brain disorder originally known as olivopontocerebellum atrophy.

It is now known as Multiple systems Atrophy. This disease is progressive and fatal. no known cure. He is losing all ability to walk , talk and eventually swallowing.

 

He had an injection of a steroid for hip pain that caused him to have a severe psychotic episode that didn't resolve  for over 2 weeks. desperate for relief he was put on seroqual for short time and it made it worse. Started on Zyprexa 5 mg and the psychosis finally stopped. 

 

Having to deal with so many other issues related to his disease he remained on Zyprexa for 10 years. He hated the feeling of lack of motivation and zombie like side effects and so he went to 2.5 several times nd it made it worse. Finally, I found this site and we are into the 8 th day of weaning. He is at 4.4 dry cut because I am in the process of getting MD, Pharmacy etc to obtain a better method and more specific precise dosage. 

 

Today has been his worse day. 

 

My question and I am sure it would be difficult for anyone to answer but with already having the inability to walk etc. How the hell do we get off this med.  Is it worth it if you have only a few good years left. How do I support him with this when So many say it takes forever to stop and feel good.

 

Thanks for letting me vent. Sincerely, Lynn

Edited by scallywag
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OK nevermind. I will get some support elsewhere. Have a great life and wish you all luck in beating the withdrawal. You have the time use it wisely because not everyone here has that luxury.

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Hi Lyn,

 

EDIT:  Rachel has just posted as I was posting and after reading her post I realised that I was thinking your husband was taking Zoloft, an AD.  My apologies.  This means that my experience is probably irrelevant to your husband's.

 

I can see that your 3 posts were made over a 5 hour period.  SA is staffed by volunteers in different parts of the world and most of us are going through our own withdrawal issues and some also work full or part time.  We volunteer as we are able, not on a roster basis.

 

I have been on ADs for 25 years.  Once I started reducing the dose of my current AD I started feeling more like my old self and it was at that time that I realised how numb I had been for almost half of my life (I am now 59).  I began enjoying the small things in life and started laughing out loud and joking again.

 

The idea of tapering slowly is to allow the brain to adapt to not getting as much of the drug and this generally helps to keep withdrawal symptoms to a minimum.  I have been fortunate to only experience minimal withdrawal symptoms for short periods.  I would call it mild discomfort.

 

Here are a couple of links which might be helpful:

 

Why taper by 10% of my dosage?

 

Tips for tapering off olanzapine (Zyprexa)

 

Keep Notes on Paper

 

Rate Symptoms Daily to Check Patterns and Progress

 

Please feel free to ask any questions here in your Intro topic.  We will try out best to assist.

Edited by ChessieCat
corrected drug link & edit note

 MISSION ACCOMPLISHED:    13 November 2021 -  0mg Pristiq      

Woohoo!!!  Finally off Pristiq   

ADs since ~1992:  25+ years - 1 unknown, Prozac (muscle weakness), Zoloft; citalopram (pooped out) CTed (very sick for 2.5 wks a few months after); Pristiq:  50mg 2012, 100mg beg 2013 (Serotonin Toxicity)  Tapering from Oct 2015 - 13 Nov 2021   LAST DOSE 0.0025mg

My full tapering program     My Intro (goes to my tapering graph)    My website

PLEASE NOTE:  I am not a medical professional.  I provide information and make suggestions.  I do not provide tapering advice via PM.  Please post questions in your Introduction topic.  Please do not tag me for any reason.  I am an unpaid volunteer and assist members if I am able to and when I have the time.  Thank you for your understanding.

Mid Nov 2021 changed to low carb diet due to diabetes & cholesterol.  Lost 1/16 body weight, BP has reduced a lot. 

Links to my exercises and weights.  I also do 3 x 5.5 min with HIIT on exercise bike with 20 secs/min as fast as I can cycle.

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OK nevermind. I will get some support elsewhere. Have a great life and wish you all luck in beating the withdrawal. You have the time use it wisely because not everyone here has that luxury.

Sorry for not responding sooner. I really can't say. If your husband doesn't have much time left it might not make much sense to put him through the agony of withdrawals. Sometimes they can be awful. Not always, but often there is is pain involved.

 

In the end only your husband can make the decision. People who are terminally ill often go on morphine, addictive as it is. Some opt out and swallow the pain in order to think clearly till the end.

 

Maybe you and your husband can make a pro and con list of going off his neuroleptic. I wish you the best possible. Please keep us informed of how things go.

 

Rachel

I have been on so many medications since I was 20 and diagnosed as "mentally ill" that I have lost count.

Right now, however I have been taking:

Lamictal 25 mg: I went on it in March for only 13 days, then cold turkeyed off when I thought I was developing a rash because of it. Pretended to go back on it, but didn't. Not the best idea, but I had no way to reduce the dose. Anyhow I had no adverse withdrawal reactions, probably because I was on it for less than 2 weeks.

Abilify 20 mg:  I have been on this for several years. Actually at least half the time I have spent as a meds "consumer" I have been on this nasty pill. I finished tapering off it at the beginning of 2016. Was reinstated during the 4 days I spent in a psych ward in March. Tapered off it again in 10 weeks, from say March 15-June 30. Needless to say this is not exact, but I remember I was off it before July 4 (patriotic holiday in America!) I am doing fine, although I know I may have to wait till Christmas or later to know I am out of the danger zone for withdrawal psychosis. The main thing I notice about being off is that I no longer crave sweets all the time and am losing weight without trying. Good thing since I used to weigh 350 lbs.!

Effexor 150 mg: This is the real trouble-maker. Since I have no other way of tapering I do the best I can by bead counting. I unscrew the gel capsule and count out the tiny micro-capsules or beads inside. This works fairly well with the generic time release version. Only 120 beads to count of almost identical size. Lately I have been "holding" at 20 bead removal due to some major stress in my life. Moving hundreds of miles from my old home and a bout of strep throat that wouldn't respond to antibiotics.  I guess that means I'm on 120 mg of Effexor right now. On October 16 I am going to recommence my taper since I am safely moved and no longer have strep! 

I admit now that I did something stupid. I had trouble opening the extra strength gel capsules containing the beads so I reinstated at the original dose for a week. I know it's not good to play ping pong with my brain, but I could never open the capsules without spilling those microscopic balls all over so I was never sure what dosage I was taking! Thank the LORD that I finally have the old kind again and can safely count out the amount. I am now back on 135 mg and feel somewhat better.

October 30, 2016. I am down to 120 mg effexor. November 27, 2016. Down to 105 mg effexor. December 25, 2016. 90 mg effexor. January 15, 2017. 75 mg effexor. January 21. 82.5 mg effexor. January 23, 90 mg again. Feb. 14, 81.25 mg. Mar. 15, 72.5 mg. Mar. 27, 65 mg.  Apr. 9, 58.75 mg. Apr. 24, 52.5 mg.

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Hi Lyn,

 

EDIT:  Rachel has just posted as I was posting and after reading her post I realised that I was thinking your husband was taking Zoloft, an AD.  My apologies.  This means that my experience is probably irrelevant to your husband's.

 

I can see that your 3 posts were made over a 5 hour period.  SA is staffed by volunteers in different parts of the world and most of us are going through our own withdrawal issues and some also work full or part time.  We volunteer as we are able, not on a roster basis.

 

I have been on ADs for 25 years.  Once I started reducing the dose of my current AD I started feeling more like my old self and it was at that time that I realised how numb I had been for almost half of my life (I am now 59).  I began enjoying the small things in life and started laughing out loud and joking again.

 

The idea of tapering slowly is to allow the brain to adapt to not getting as much of the drug and this generally helps to keep withdrawal symptoms to a minimum.  I have been fortunate to only experience minimal withdrawal symptoms for short periods.  I would call it mild discomfort.

 

Here are a couple of links which might be helpful:

 

Why taper by 10% of my dosage?

 

Tips for tapering off olanzapine (Zyprexa)

 

Keep Notes on Paper

 

Rate Symptoms Daily to Check Patterns and Progress

 

Please feel free to ask any questions here in your Intro topic.  We will try out best to assis

Rachel thank you for responding. I apologize for my outburst. I realise everyone here deal with many issues, just at my wits end. As a caregiver of someone who is terminal losing control and having dignity intact is difficult. I want him to come to realize that quality of life is more important on his own,last night he admitted that maybe coming off this drug is worse than being on it. One day at a time that is all each of can do. 

 

I vented inappropriately and am embarrassed.I owe all of you an apology.  I wish you all the best of luck in your journey to a better life. 

Link to comment

 

Hi Lyn,

 

EDIT: Rachel has just posted as I was posting and after reading her post I realised that I was thinking your husband was taking Zoloft, an AD. My apologies. This means that my experience is probably irrelevant to your husband's.

 

I can see that your 3 posts were made over a 5 hour period. SA is staffed by volunteers in different parts of the world and most of us are going through our own withdrawal issues and some also work full or part time. We volunteer as we are able, not on a roster basis.

 

I have been on ADs for 25 years. Once I started reducing the dose of my current AD I started feeling more like my old self and it was at that time that I realised how numb I had been for almost half of my life (I am now 59). I began enjoying the small things in life and started laughing out loud and joking again.

 

The idea of tapering slowly is to allow the brain to adapt to not getting as much of the drug and this generally helps to keep withdrawal symptoms to a minimum. I have been fortunate to only experience minimal withdrawal symptoms for short periods. I would call it mild discomfort.

 

Here are a couple of links which might be helpful:

 

 

Why taper by 10% of my dosage?

Tips for tapering off olanzapine (Zyprexa)

Keep Notes on Paper

Rate Symptoms Daily to Check Patterns and Progress

Please feel free to ask any questions here in your Intro topic. We will try out best to assis

Rachel thank you for responding. I apologize for my outburst. I realise everyone here deal with many issues, just at my wits end. As a caregiver of someone who is terminal losing control and having dignity intact is difficult. I want him to come to realize that quality of life is more important on his own,last night he admitted that maybe coming off this drug is worse than being on it. One day at a time that is all each of can do.

 

I vented inappropriately and am embarrassed.I owe all of you an apology. I wish you all the best of luck in your journey to a better life.

I wish you all the best in whatever you decide to do regarding withdrawing or not. You're both in a tough position.

Dec 2016 Risperidone 1 mg, Seroquel 25mg, Latuda 40mg 

Jan - Mar 2017 Paliperidone (invega) 6 -9mg, Zoloft, Mirtazapine, Proprananol, Ativan

Mar - Apr 2017 Aripiprazole (abilify) 10 mg

Apr 2017 - July 2017 Olanzapine (zyprexa) 5 mg tapered to 0mg

Oct 2017 - Present Effexor 37.5mg and Prozac 10mg 

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Plshelp,

 

   Thank you. He is staying at 4.4mg of Zyprexa from 5mg. He is a fighter. The unknown is with already having degeneration of the cerebellum, flattening of the pons it is questionable if even if we went thru the minimal titration that a positive result would be viable. Is it the disease, drugs or both. 

 

   I am thankful for the kind support. It is what it is. Bless all of you in your quest for "normalcy". 

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