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Neil: antipsychotic hell


Neil

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Hello,

my name is Neil (removed) and I'm from (removed) Oregon. I've been on antipsychotics for about 4-5 years and have never recovered from them. I read somewhere online that you don't hear a lot of recovery stories about antipsychotics, and it seems to be true. This is discouraging because a lot of time my meds were forced. (For a year I tortured myself on the drugs, and all the rest was basically forced by injection or forced meds. (The order in the hospital would equal an injection if I didn't take the pill which I did). I've just basically noticed what everyone has said: loss of enjoyment in life. I don't feel even close to the same way I did before the drugs. There are all sorts of data on brain damage and nerve death from neuroleptics. I just spent two months in a mental hospital on forced meds because the doctors don't know what the hell theyre prescribing. I have permanant emotional damage as well as the physical damage from the drugs. Please help.

 

p.s. Currently I'm off these drugs but my parents have legal guardianship and the power to force the drugs on me if I'm in an institution, so I'm working on quitting that legal status so this never happens again.

Edited by JanCarol
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  • ChessieCat changed the title to Neil: Antipsychotic hell
  • Moderator

Hey Neil, welcome!

 

What drug(s) were you on?  When did you go off?  How did you go off?  Did you taper?  Or Cold Turkey?

I know you may not want to hear it, but if you went off too quickly, you may need to reinstate a tiny amount.

 

The most vital thing right now (besides getting off the drugs) is not "getting caught."

Here's what I wrote about "getting caught":

Quote

I believe in "mental diversity" (that is what I learned from Will Hall).  You can believe in whatever you want, and listen to whomever you want, including voices that nobody but you can hear - but when your behaviour crosses a certain line, you GET CAUGHT.  One of the early goals is to learn what behaviours get you CAUGHT and never go there.  Yelling loudly in public places.  Hiding on store shelves behind the merchandise.  Threatening behaviour (even if it is harmless, it makes people uncomfortable).  Publicly proclaiming your deep spiritual belief and asking others to join you in your revelation.  Public self harm.  Crying loudly in a public place but not talking to anyone for hours.  These are just a few examples that I personally have experienced with myself and close loved ones.  If you are on court ordered depot shots, you did something to GET CAUGHT.

 

So when you say you were in hospital with forced treatment - you must have done something to "Get caught."  The first step in getting out and getting well - is to recognize the behaviours which get your caught.  

 

Here is Will Hall's story.  He is an advocate against forced treatment, and may be available to talk to you on Skype.  He may even be in your neighborhood (iirc he is in Oregon, too), and the MindFreedom and Icarus Project people might be in your neighborhood, too.  He does podcasts on Madness Radio which you might find uplifting.

 

So - in coming off your drugs, it's vitally important that you take care of yourself in such a way that you will not get caught again, and will be successful.

Like you say, it is challenging to come of this class of drug.  But there are success stories.  

Aria Permanent Damage after polydrugging - but happy to have her brain back

GiaK at Beyondmeds.com

Edted Tapering off Abilify - encouragement

Rhiannon's recovery from long drug use and polypharmacy

SorrowExpert Successful taper from Neuroleptics

 

We strongly recommend tapering as a successful method to sneak away from these drugs.

Please, put your drug history into your signature.  Please Put Your Drug History Into your Signature

 

What we are looking for is:

When did you start them (how old were you then?)

What drug were you put on, and when, at what dose
What other drugs have been added or replaced (how many drug changes), dosage and when (if possible)

How long did it take you to come off?
What was the date of your last dose?

These drugs are not like aspirin, they have changed your brain.  The goal in getting off of them is not to get it out of your system as fast as possible - instead it's the opposite - to get them out of your system as slowly as possible so as to not upset the balance in your brain.  To go too fast is destabilising, and we want you to stay stable and symptom free.


I know this article is about antidepressants - but all psych drugs  remodel the brain in similar ways (just using different neurotransmitters).  Please read this to understand homeostasis, and how to keep a balanced brain in withdrawal:
Intro to Antidepressant Withdrawal Syndrome

 

If you are having trouble reading, here is a short video which also explains the healing process quite well:
Healing from Antidepressants - Patterns of Recovery (by Toxic Antidepressants)

Are you having symptoms now?

 

You are not damaged, you will heal and it does get better.  What you hear here at SA will be different to what you hear elsewhere - sometimes the best way off a drug is to go back on it to get symptoms under control, and then slow tapering the rest of the way off.  

I hope we can be of assistance in your journey and choices, and

 

I hope you see the sun today!
 

"Easy, easy - just go easy and you'll finish." - Hawaiian Kapuna

 

Holding is hard work, holding is a blessing. Give your brain time to heal before you try again.

 

My suggestions are not medical advice, you are in charge of your own medical choices.

 

A lifetime of being prescribed antidepressants that caused problems (30 years in total). At age 35 flipped to "bipolar," but was not diagnosed for 5 years. Started my journey in Midwest United States. Crossed the Pacific for love and hope; currently living in Australia.   CT Seroquel 25 mg some time in 2013.   Tapered Reboxetine 4 mg Oct 2013 to Sept 2014 = GONE (3 years on Reboxetine).     Tapered Lithium 900 to 475 MG (alternating with the SNRI) Jan 2014 - Nov 2014, tapered Lithium 475 mg Jan 2015 -  Feb 2016 = GONE (10 years  on Lithium).  Many mistakes in dry cutting dosages were made.


The tedious thread (my intro):  JanCarol ☼ Reboxetine first, then Lithium

The happy thread (my success story):  JanCarol - Undiagnosed  Off all bipolar drugs

My own blog:  https://shamanexplorations.com/shamans-blog/

 

 

I have been psych drug FREE since 1 Feb 2016!

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Hi Neil, I'm so glad you're here! What a huge journey you've been, it must have been hugely frightening. What a great post JanCarol - I'm glad you reposted the 'getting caught' para from your journal. I love that one - and the one about 'how to talk to your psych doctors'.

 

Congratulations Neil on getting this far xxxmollyn

 

Drug history

  • 20mg paxil in 2001 - 4 months use  
  • 20mg paxil in 2003 - 2 months use 
  • 20mg paxil in 2008 - 8 years continuous

Withdrawal history:

  • March 2014 - disastrous alternate day taper
  • Jan 2015 - 15mg to 10mg. Disaster
  • Sept 2015 -  10mg to 5mg. Disaster. Reinstated to 6mg. Relief
  • Oct 2015 - started slow 10% taper 
  • Oct 2016 - at 4mg- stop taking paxil (not recommended)

 

I'm not a medical professional. Seek advice from a knowledgeable medical practitioner.

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I was on risperdal 2mg for a year (when I tortured myself) and Celexa for that same time period. Then I went off for six months and then I was forced invega/paliperidone for 3 full years (the injection monthly) then I've been off and on for about the past year of invega and most recently zyprexa. I'm all off right now and I'm feeling so much happier.

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^^^ really ? define happier .... like can you sleep ? no more headaches or muscle spasms ? no symptoms at all ?

Risperidone - started at 10mg

Decreased to 1mg within the month

Abilify - started at 10mg

Decreased to 1mg

[Oct - Nov 2016]

Continued for approx. 2 - 3 weeks upon psych ward release

Invega injection one time

[Feb 2017]

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  • Moderator

Okay Neil, we need more information.

 

So the risperidal and Celexa were some years ago.  How old were you then?

 

Did you cold turkey off of both of those?  

What happened to "get you caught" and forced on Invega?  Was it just your parents?  Or was it something legal?

 

How do you go "on and off" invega - aren't the injections every month?  

 

When did you start Zyprexa?  What dose?  How long did you take it?  Did you quit cold turkey?  When was your last dose?

 

I have to tell you, these changes do not bode well for you staying off the drugs permanently.  The more you quit and start and change - the harder it is to stay well.


Here's what I've said elsewhere about cold turkey withdrawal:

 

Quote

Think of cold turkey withdrawal as jumping off a cliff - only you don't know how tall the cliff is, you don't know how far you are falling, or how fast.  You don't know if you will hit bottom in 3 weeks or 30.  You only know that when you hit the ground and fall into a million tiny pieces, that now it will be difficult to "get it together" again.

 

A reinstatement serves as a guy wire, a harness, a bungy cord - to protect from that giant fall.  You  is within the window of opportunity to benefit from it.  With a reinstatement, you stop before you hit bottom.  You still may "bounce against the cliff" a few times - there will still be symptoms - but you will be in control of the descent down from there.  Then, when she is stabilized and well enough, she can gradually lower herself down from that last tiny amount.

 

Depending on how long you've been off olanzapine (Zyprexa) and what your symptoms are, it may help you to go back on a tiny dose.

 

What symptoms have you been having since your last dose of Zyprexa?

I hope you see the sun today!

"Easy, easy - just go easy and you'll finish." - Hawaiian Kapuna

 

Holding is hard work, holding is a blessing. Give your brain time to heal before you try again.

 

My suggestions are not medical advice, you are in charge of your own medical choices.

 

A lifetime of being prescribed antidepressants that caused problems (30 years in total). At age 35 flipped to "bipolar," but was not diagnosed for 5 years. Started my journey in Midwest United States. Crossed the Pacific for love and hope; currently living in Australia.   CT Seroquel 25 mg some time in 2013.   Tapered Reboxetine 4 mg Oct 2013 to Sept 2014 = GONE (3 years on Reboxetine).     Tapered Lithium 900 to 475 MG (alternating with the SNRI) Jan 2014 - Nov 2014, tapered Lithium 475 mg Jan 2015 -  Feb 2016 = GONE (10 years  on Lithium).  Many mistakes in dry cutting dosages were made.


The tedious thread (my intro):  JanCarol ☼ Reboxetine first, then Lithium

The happy thread (my success story):  JanCarol - Undiagnosed  Off all bipolar drugs

My own blog:  https://shamanexplorations.com/shamans-blog/

 

 

I have been psych drug FREE since 1 Feb 2016!

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I went cold turkey every time I've gotten off the drugs. To antiantipsychotic, yes I'm still sleeping after coming off the zyprexa and when I said i was feeling happy I guess that was just the mood I was in. I was started on zyprexa about a month ago after the doctor found invega to be useless for me. Zyprexa was 15 mg. Since zyprexa I haven't noticed any symptoms other than feeling better and I'm still completely stable off the drug(s).

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  • Moderator

Hey Neil - it's great that your sleeping.

 

So - you went off Invega and on Zyprexa a month ago?

 

and then you CT'd Zyprexa when?

 

Please Please Put Your Drug History Into your Signature Please.  It's a mimimum requirement for participation here.

 

"still completely stable" until you get caught again, there is a Delayed Onset of Withdrawal Symptoms, which means that they might not hit you for 3, 6, 9 months - or until you hit a life stress.  That's why the docs are so eager to call it "relapse", because they can't conceive that the drugs can have effect so far out, but they do.

 

I still recommend tiny reinstatement.  Not enough to suffer from the numbing and horrible side effect - but enough to keep the wibbly-wobbly's away for the next 6 months or so, until you know that you can stay off and not get caught again.  15 mg a month ago, if you CT'd a week ago - you might do fine on 1 mg.

 

You're probably not going to notice "withdrawals" until it is too late, and you are in the midst of them.  At that time, a reinstatement is not as successful.  If you put in a tiny amount of Zyprexa now, as a stop gap, it just might stop you rappelling too quickly down the cliff.

 

What are you doing for your own healing?  Exercise?  Meditation?  Mindfulness?  CBT?  

"Easy, easy - just go easy and you'll finish." - Hawaiian Kapuna

 

Holding is hard work, holding is a blessing. Give your brain time to heal before you try again.

 

My suggestions are not medical advice, you are in charge of your own medical choices.

 

A lifetime of being prescribed antidepressants that caused problems (30 years in total). At age 35 flipped to "bipolar," but was not diagnosed for 5 years. Started my journey in Midwest United States. Crossed the Pacific for love and hope; currently living in Australia.   CT Seroquel 25 mg some time in 2013.   Tapered Reboxetine 4 mg Oct 2013 to Sept 2014 = GONE (3 years on Reboxetine).     Tapered Lithium 900 to 475 MG (alternating with the SNRI) Jan 2014 - Nov 2014, tapered Lithium 475 mg Jan 2015 -  Feb 2016 = GONE (10 years  on Lithium).  Many mistakes in dry cutting dosages were made.


The tedious thread (my intro):  JanCarol ☼ Reboxetine first, then Lithium

The happy thread (my success story):  JanCarol - Undiagnosed  Off all bipolar drugs

My own blog:  https://shamanexplorations.com/shamans-blog/

 

 

I have been psych drug FREE since 1 Feb 2016!

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I'll work on the signature. Yes your timeline is correct. Thanks for the information. I wouldn't even consider continuing zyprexa at any level because of my traumatic drug history. Remember, I was on invega for three years unnecesarily. 

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2 hours ago, Neil said:

I'll work on the signature. Yes your timeline is correct. Thanks for the information. I wouldn't even consider continuing zyprexa at any level because of my traumatic drug history. Remember, I was on invega for three years unnecesarily. 

Why were you put on these drugs? 

Are you feeling better now off them? 

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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I was put in these drugs for two reasons: number one, I was in the midst of a psychotic episode. But really more importantly number two, quack doctors who have no idea what they're prescribing.

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If you look around the internet and ask about the use of neuroleptics, it's very clear: they are only for short term treatment and only to be used in the most extreme circumstances.

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  • 4 months later...

I was forced on drugs for 4 years have never even th sligthest recovered notice I'm psychotic all the time even when I wouldn't be the drugs have stripped all the meaning out of life and left a shell of neuronal. 

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  • Moderator Emeritus

I've moved the new topic you created to your Intro topic.  Each member has 1 Intro topic where they can ask questions and journal their progress.

 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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  • Moderator

Neil,

 

We would like to help you, but we need more information.  Please complete our drug signature.  Do the best you can.  Here's how to do it:

 

To give members the best information, we ask them to summarize their medication history in a signature -- drugs, doses, dates, and discontinuations & reinstatements, in the last 12-24 months particularly.
  • Any drugs prior to 24 months ago can just be listed with start and stop years. 
  • Please use actual dates or approximate dates (mid-June, Late October) rather than relative time frames (last week, 3 months ago) 
  • Spell out months, e.g. "October" or "Oct."; 9/1/2016 can be interpreted as Jan. 9, 2016 or Sept. 1, 2016. 
  • Please leave out symptoms and diagnoses. 
  • A list is easier to understand than one or multiple paragraphs. 
  • Link to Account Settings – Create or Edit a signature.

 

 

Gridley Introduction

 

Lexapro 20 mg since 2004.  Begin Brassmonkey Slide Taper Jan. 2017.   

End 2017 year 1 of taper at 9.25mg 

End 2018 year 2 of taper at 4.1mg

End 2019 year 3 of taper at 1.0mg  

Oct. 30, 2020  Jump to zero from 0.025mg.  Current dose: 0.000mg

3 year, 10 month taper is 100% complete.

 

Ativan 1 mg to 1.875mg 1986-2020, two CT's and reinstatements

Nov. 2020, 7-week Ativan-Valium crossover to 18.75mg 

Feb. 2021, begin 10%/4 week taper.  Current dose as of Jan. 11, 2022: 5.4mg 

Taper is 71% complete.

 

Imipramine 75 mg daily since 1986.  Jan-Sept 2016 tapered to 16mg.  

Held until Aug 2021, tapered for 4 weeks to 14.4mg and holding.  

Taper is 80% complete.  

  

Supplements: omega-3, vitamins C, E and D3, magnesium glycinate, probiotic, zinc, melatonin .3mg


I am not a medical professional and this is not medical advice, but simply information based on my own experience, as well as other members who have survived these drugs.

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3 years on paliperidone respiderone shot for 36 months straight would be the one that did it

 

Edited by ChessieCat
changed post to lower case
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Neil, 

Are you feeling any better since being off this toxic crap? I'm still not well and it's been 8 months. 

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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There has been absolutely 0% progress for me 5 months out, and they only put me on paliperidone and zyprexa for 2 months. My suspicion is the drug induces a permanant form of emotional numbing as well as cognitive brain damage that no matter what will never improve. The suspicion is that the drugs actually kill brain neuronals. It is the absolute worst depression I can imagine in fact before the drugs I would have never imagined that anything could be this severe in reality. I mean how could it even be without killing you? You know. I can't think a single sentence out in my brain and they are doing this legally. 

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29 minutes ago, Plshelp said:

Neil, 

Are you feeling any better since being off this toxic crap? I'm still not well and it's been 8 months. 

And dude they're doing this because we're like weird and vulnerable? It's people who feel the desire to incinerate reality to build themselves up it's call d narcissim 

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  • 2 weeks later...
On 24/02/2018 at 3:15 AM, Neil said:

It's like silence of the lambs 

Holy crap! You nailed it! 

 

On 24/02/2018 at 3:06 AM, Neil said:

There has been absolutely 0% progress for me 5 months out, and they only put me on paliperidone and zyprexa for 2 months. My suspicion is the drug induces a permanant form of emotional numbing as well as cognitive brain damage that no matter what will never improve. The suspicion is that the drugs actually kill brain neuronals. It is the absolute worst depression I can imagine in fact before the drugs I would have never imagined that anything could be this severe in reality. I mean how could it even be without killing you? You know. I can't think a single sentence out in my brain and they are doing this legally. 

I went on antidepressants 5 months ago bcus I couldn't handle the depression. Nevermind the depression, the suicidal thoughts I had when I was first on the antipsychotics was unbelievable! 

 

I know exactly what you mean about them doing this legally! It's totally effed up! They are destroying ppl's brains and lives. They have completely destroyed mine. 

 

I honestly don't know how they can put ppl into a drug induced living coma. This isn't right. If I had more emotions and motivation, I would go on a doctor killing spree and then kill myself, bcus everyday living life like this is complete and utter hell. 

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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Btw. The difference between dysregulation and cell death isn't really much. These drugs inhibit almost all neurotransmitters and cause major disruptions within many body systems. It's like winning the lottery for healing. I've talked to many ppl who have recovered fully, partially or not at all. It really depends on your ability to heal in general, based on your genetic makeup. They say it depends on your dosage, the amount of time you were on the drugs. But, realistically, I've talked to ppl who have been on high doses, come off and seen major improvements within weeks. 

 

I hope you can see some improvement soon. But I've read about ppl being on these antipsychotics for 3 weeks and it taking from weeks of coming off to 18 months to start seeing improvements. Healing can happen at any time. It's just unknown when and how much will recover. 

 

Idk how much more I can endure of this. I would rather be in a German concentration camp than living in this state. Or have cancer, or a degenerative neurological illness. I'd at least have my emotions, motivation, thoughts and so much more. 

 

Keep us posted about your journey. Feel free to pm me anytime. 

 

Xo Plshelp.

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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  • 1 year later...

Topic title:  Is abilify the best antipsychotic option?

 

I've been on abilify for about a year and just tapered to the minimum dose of 10 mg. I notice I feel better but I wonder if I would feel even better on a different antipsychotic. I've tried resperidone, invega, zyprexa, and haldol. So far abilify seems the least of evils for me. 

 

Edited by ChessieCat
added topic title
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  • ChessieCat changed the title to Neil: antipsychotic hell
  • Moderator Emeritus

SA is a site for reducing / going off psychiatric drugs.  We do not make recommendations about what drug to try next.

 

There are other sites where you might find answer/s to your question/s:  http://DepressionForums.org or http://PatientsLikeMe.com.

 

Please note this from What Will Get You Warned or Banned:

 

On 6/16/2011 at 4:45 AM, Altostrata said:

- Drug shopping or recommending drugs
This is a site for going off drugs. It is not a site for finding out what drug to take next, comparing drug cocktails, or recommending what drug to add.

 

 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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