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MB72: Continue with reinstatement or stop? Is this now protracted withdrawal? Terrified this is my new reality...


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Posted (edited)

Hello everyone, I'm new to this forum and wish I had found it earlier than I did. I'm sure I could have avoided so much pain and suffering with the correct knowledge and guidance.

Anyway, I'm so very grateful that there are amazing people who are devoting their lives to helping people survive this process.

 

I am a 51 year old female living in Brisbane Australia

Have been on antidepressants for 30 years. Should never have been prescribed them in the first place, but that is something I cannot change now.
First prescribed Zoloft at age 21 (1993)  

 

Switched many times due to various side effects over the years. The ones I can remember were Pristiq, Cymbalta, Brintellex and I'm sure my memory is forgetting a few. Most recent has been Prozac - Fluoxetine since approx 2014-20mgs (updosed twice during that time to 40mg on GP's advice). 2021 decided to taper as I hated the feeling of being on SSRis and also very concerned about the long term damage to my brain on them. I was ok for several months, then experienced severe withdrawal symptoms, severe anxiety, panic attacks, lost 16kgs of weight (over 20% of body weight) due to inability to eat and chronic diarrhoea. I went back onto 20mgs Prozac, started taking medicinal CBD and eventually I stabilised. Doctor wanted me to increase to 40mg but I refused. 

 

With an increasing loss of faith in the medical profession, I was still very concerned about my dreadful memory, emotional blunting, no libido and a future dependant on a neurotoxic drug, so I tried again.

May 2023 - Tried to taper much slower (over 5 month period, but very unfortunately I did not know about hyperbolic tapering then) My last dose was approx 3-5mg in mid-October 2023. I was completely fine and honestly thought I had succeeded and was finally drug free. Delayed withdrawal started to hit in late January 2024 and has been extremely bad this time around. Panic attacks, feelings of impending doom, constant fear, diarrhoea, palpitations, nausea, no appetite, suicide ideation. 


Found Dr Mark Horrowitz and this site, and started 1mg reinstatement Fluoxetine 16 days ago. First 2 days at 1mg were pretty bad, immediate headache then full blown panic attacks in the evening. Decided to drop to 0.8mg and stayed there for the last 12 days. Have been experiencing akathisia symptoms for the first time and fever/cold chills on top of severe anxiety, IBS, palpitations and more intense SI. Have just started Propanolol 10mg twice a day and trying not to take Diazepam unless in severe panic.

I'm really concerned I may now be in protracted withdrawal and desperately need help. I don't know if I should stop the reinstatement altogether, or persist at an even lower dose? I'm terrified this may now be my new reality. 

Edited by Emonda
Name to title

30 year history AD history

multiple drugs over the years

Zoloft, Cymbalta, Pristiq, Brintillex etc etc

Prozac last 10 plus years

Tapered relatively slowly (clearly not slow enough!) twice unsuccessfully - both times very delayed withdrawals

Recently learnt about hyperbolic tapering, kindling and reinstating at very low levels.

Unfortunately it has been 6 months since my last dose so concerned reinstatement may not work for me

Have reinstated @1mg- terrible WD and worse on reinstatement

reduced to 0.8mg for 12 days- worsening withdrawals

Wish I knew what to do- reduce more, cease entirely or hold whilst living in hell?

 

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  • Emonda changed the title to MB72: Continue with reinstatement or stop? Is this now protracted withdrawal? Terrified this is my new reality...
  • Administrator

Welcome @MB72

Glad you've found us, although sorry you've had the need to.

 

So the moderators can best help you, please complete your drug signature by following these instructions. Adding a signature ensures your drug history appears at the bottom of every post, making it more efficient for those trying to assist. 

 

This link should go directly to your own signature: Account Settings – Create or Edit a signature.

 

1 hour ago, MB72 said:

Have been on antidepressants for 30 years. Should never have been prescribed them in the first place, but that is something I cannot change now.
First prescribed Zoloft at age 21 (1993)  

 

This is a very common story. Mine is not dissimilar. Accepting the past and moving forward is part of the recovery process.

 

1 hour ago, MB72 said:

Tried to taper much slower

 

For future reference, and when tapering towards zero once you stabilise, keep this link handy: Why taper by 10% of my dosage? The reductions should get smaller and smaller each month, for example: 10mg, 9mg, 8.1mg, 7.3mg etc. Importantly, if you develop unpleasant side effects from tapering, halt the taper, give yourself time to settle, and once stable, taper more slowly and by smaller amounts moving forward.

 

1 hour ago, MB72 said:

Delayed withdrawal started to hit in late January 2024 and has been extremely bad this time around. Panic attacks, feelings of impending doom, constant fear, diarrhoea, palpitations, nausea, no appetite, suicide ideation. 

 

Pretty common, unfortunately: Daily Checklist of Antidepressant Withdrawal Symptoms (PDF) 

 

Have you seen these two links regarding reinstatement - it is generally best when done within 3 months of stopping. The further out from the stopping date, the lower the amount you reinstate.

 

About Reinstating and Stabilizing to Reduce Withdrawal Symptoms

 

Kindling

 

So you felt worse immediately since reinstating? Or is it just a continuation of the feelings you experienced since January 2024? Can you relate to anything in the Kindling link? If not, it's the items on the WD checklist that you are struggling with? What you describe sounds like WD symptoms to me.

 

There are some good nuggets to read in these links:

 

Windows and waves pattern of stabilization

 

Emotional Spirals

 

Non-drug coping strategies

 

Melatonin for sleep

 

We don't suggest many supplements, but two that many of us find helpful are magnesium and omega-3 fish oil. Here are the links for info about those. Add one at a time and start with a low dose to see how it affects you. 


Magnesium

 

Omega-3 fatty acids (fish oil)

 

Avoid alcohol. 

 

Don't change the manufacturer of your AD.

 

This is your own Introduction topic.  Each member has only ONE Introduction topic.  Your own Introduction topic is the best place to ask questions and the place to journal your progress.  This keeps your history in one place and means you do not have to repeat your story. 

 

Once again, welcome to S.A.

 

Emonda

 

 

Please don't send me PMs. I am not a doctor. My comments are based on my personal experience with ADs and tapering. Consult your doctor about your own medical decisions.

Start of taper: Jan ’22 Vortioxetine 15mg, 

End year 1: 4.5mg, 

End year 2: 2.38mg, 

Year 3: 19 Jan 2.33mg, 26 Jan 2.28mg, 2 Feb 2.24mg, 8 Feb 2.19mg, 29 Feb 2.15mg, 7 Mar 2.10mg, 14 Mar 2.06mg, 21 Mar 1.99mg, 10 Apr 1.95mg, 17 Apr 1.91mg, 24 Apr 1.87mg, 1 May 1.83mg, 23 May 1.80mg, 30 May 1.76mg, 8 Jun 1.72mg, 13 Jun 1.66mg, 3 Jul 1.62mg, 10 Jul 1.58mg, 17 Jul 1.54mg, 23 Jul 1.50mg

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17 hours ago, Emonda said:

Welcome @MB72

Glad you've found us, although sorry you've had the need to.

 

So the moderators can best help you, please complete your drug signature by following these instructions. Adding a signature ensures your drug history appears at the bottom of every post, making it more efficient for those trying to assist. 

 

This link should go directly to your own signature: Account Settings – Create or Edit a signature.

 

 

This is a very common story. Mine is not dissimilar. Accepting the past and moving forward is part of the recovery process.

 

 

For future reference, and when tapering towards zero once you stabilise, keep this link handy: Why taper by 10% of my dosage? The reductions should get smaller and smaller each month, for example: 10mg, 9mg, 8.1mg, 7.3mg etc. Importantly, if you develop unpleasant side effects from tapering, halt the taper, give yourself time to settle, and once stable, taper more slowly and by smaller amounts moving forward.

 

 

Pretty common, unfortunately: 

Daily Checklist of Antidepressant Withdrawal Symptoms (PDF) 

 

Have you seen these two links regarding reinstatement - it is generally best when done within 3 months of stopping. The further out from the stopping date, the lower the amount you reinstate.

 

About Reinstating and Stabilizing to Reduce Withdrawal Symptoms

 

Kindling

 

So you felt worse immediately since reinstating? Or is it just a continuation of the feelings you experienced since January 2024? Can you relate to anything in the Kindling link? If not, it's the items on the WD checklist that you are struggling with? What you describe sounds like WD symptoms to me.

 

There are some good nuggets to read in these links:

 

Windows and waves pattern of stabilization

 

Emotional Spirals

 

Non-drug coping strategies

 

Melatonin for sleep

 

We don't suggest many supplements, but two that many of us find helpful are magnesium and omega-3 fish oil. Here are the links for info about those. Add one at a time and start with a low dose to see how it affects you. 


Magnesium

 

Omega-3 fatty acids (fish oil)

 

Avoid alcohol. 

 

Don't change the manufacturer of your AD.

 

This is your own Introduction topic.  Each member has only ONE Introduction topic.  Your own Introduction topic is the best place to ask questions and the place to journal your progress.  This keeps your history in one place and means you do not have to repeat your story. 

 

Once again, welcome to S.A.

 

Emonda

 

 

Hello Emonda and thank you so much for your quick and thorough response . I have read several of the links and will read the ones I have not seen-thank you!!

I am now aware that reinstatement should have been done much sooner but I did not find this information until 6 months out and well into withdrawals. My withdrawals have been getting progressively worse, but I noticed new and worsening symptoms when I recently reinstated- mainly the chills and fevers and akathisia which I had never experienced before. I have never been so scared in my life.

Its so hard to know if my withdrawals are just getting worse or if it is a kindling reaction? I am often sensitive to supplements and medications. I also have a long history of alcohol drinking which I know does not help. I'm quite a light drinker and I have used it to relax and in social settings. Since I have been in withdrawal I have limited it much more. Strangely, the very few times I have had a drink - I have found it calms me down significantly, but I worry this is just setting me up for more bad waves. 

I have decided to trial 0.6mg to see how it goes. I have no idea if this is the right or wrong thing to do? If it is too much or not enough? 

I desperately want to stabilise, it's just so hard to know what dose will work, if any, especially since prozac has such a long half life and it took so long for the withdrawals to show up after stopping. It's impossible to properly assess it's real time effects. 

 

30 year history AD history

multiple drugs over the years

Zoloft, Cymbalta, Pristiq, Brintillex etc etc

Prozac last 10 plus years

Tapered relatively slowly (clearly not slow enough!) twice unsuccessfully - both times very delayed withdrawals

Recently learnt about hyperbolic tapering, kindling and reinstating at very low levels.

Unfortunately it has been 6 months since my last dose so concerned reinstatement may not work for me

Have reinstated @1mg- terrible WD and worse on reinstatement

reduced to 0.8mg for 12 days- worsening withdrawals

Wish I knew what to do- reduce more, cease entirely or hold whilst living in hell?

 

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  • Administrator
2 hours ago, MB72 said:

Strangely, the very few times I have had a drink - I have found it calms me down significantly, but I worry this is just setting me up for more bad waves. 

 

Yeah, It's the "setting you up for more bad waves" I'd be mindful of. I cut out alcohol over 12 months ago. I noticed the morning after just one drink, my WD symptoms would be far worse.

 

2 hours ago, MB72 said:

I have decided to trial 0.6mg to see how it goes. I have no idea if this is the right or wrong thing to do? If it is too much or not enough? 

 

Keep notes of your mood/symptoms. That's what I do. Sometimes, you look back at your notes and think things have been terrible forever, only to be reminded that you did, in fact, have some good periods, too.

 

2 hours ago, MB72 said:

I desperately want to stabilise

 

You will with time and much patience.

 

Have a read over the various links again. I do it myself when I need a reminder.

 

Also, hop over to the success stories for a little encouragement.

Please don't send me PMs. I am not a doctor. My comments are based on my personal experience with ADs and tapering. Consult your doctor about your own medical decisions.

Start of taper: Jan ’22 Vortioxetine 15mg, 

End year 1: 4.5mg, 

End year 2: 2.38mg, 

Year 3: 19 Jan 2.33mg, 26 Jan 2.28mg, 2 Feb 2.24mg, 8 Feb 2.19mg, 29 Feb 2.15mg, 7 Mar 2.10mg, 14 Mar 2.06mg, 21 Mar 1.99mg, 10 Apr 1.95mg, 17 Apr 1.91mg, 24 Apr 1.87mg, 1 May 1.83mg, 23 May 1.80mg, 30 May 1.76mg, 8 Jun 1.72mg, 13 Jun 1.66mg, 3 Jul 1.62mg, 10 Jul 1.58mg, 17 Jul 1.54mg, 23 Jul 1.50mg

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3 hours ago, Emonda said:

 

Yeah, It's the "setting you up for more bad waves" I'd be mindful of. I cut out alcohol over 12 months ago. I noticed the morning after just one drink, my WD symptoms would be far worse.

 

 

Keep notes of your mood/symptoms. That's what I do. Sometimes, you look back at your notes and think things have been terrible forever, only to be reminded that you did, in fact, have some good periods, too.

 

 

You will with time and much patience.

 

Have a read over the various links again. I do it myself when I need a reminder.

 

Also, hop over to the success stories for a little encouragement.

 

Thanks so much Emonda- I will do as you have suggested. I have a long way to go. 

30 year history AD history

multiple drugs over the years

Zoloft, Cymbalta, Pristiq, Brintillex etc etc

Prozac last 10 plus years

Tapered relatively slowly (clearly not slow enough!) twice unsuccessfully - both times very delayed withdrawals

Recently learnt about hyperbolic tapering, kindling and reinstating at very low levels.

Unfortunately it has been 6 months since my last dose so concerned reinstatement may not work for me

Have reinstated @1mg- terrible WD and worse on reinstatement

reduced to 0.8mg for 12 days- worsening withdrawals

Wish I knew what to do- reduce more, cease entirely or hold whilst living in hell?

 

Link to comment

Hi Emonda, could you please help me to find the success stories. Is there a section I am missing? I have typed in the search bar but nothing is coming up. 

Thank you 

30 year history AD history

multiple drugs over the years

Zoloft, Cymbalta, Pristiq, Brintillex etc etc

Prozac last 10 plus years

Tapered relatively slowly (clearly not slow enough!) twice unsuccessfully - both times very delayed withdrawals

Recently learnt about hyperbolic tapering, kindling and reinstating at very low levels.

Unfortunately it has been 6 months since my last dose so concerned reinstatement may not work for me

Have reinstated @1mg- terrible WD and worse on reinstatement

reduced to 0.8mg for 12 days- worsening withdrawals

Wish I knew what to do- reduce more, cease entirely or hold whilst living in hell?

 

Link to comment
  • Mentor

Here you go. Otherwise, it’s under Browse/Forums in the site’s menu at the top of the page.

 

https://www.survivingantidepressants.org/forums/forum/28-success-stories-recovery-from-psychiatric-drug-withdrawal/

1988-1996  Various AD’s, all classifications.  1996-2019  Effexor XR 37.5mg to 150mg. Jan 2017 onward, 37.5 mg.

2019  Apr 11 - July 24: Trials of Latuda then Rexulti. CT'd off per dr.  Jul 24: CT Effexor (per dr)  Sep 9-19: Viibryd, CT (per dr).  Sep 23-27: Trintellix. CT (per dr).  Sep 28 - Oct 24:  Prozac 10mg.  Oct 24:  Stop Prozac, began Pristiq 25mg->50->25mg.

2020  Feb 1: CT Pristiq. Feb 1: Reinstated Effexor XR (10 large beads) gradually increasing to 22 beads (15L+7M) or 9.072mgai on Mar, 2020.

2021  Started Jan w 21 beads (13L+8M) or 8.47mgai ended Dec: 17 beads (7L+9M+1S) or 6.19mgai. Severe COVID + TIA.

2022  Ended yr w 14 beads (3L+5M+5S+1XS) or 4.5mgai. Major jaw injury during year + family tragedy.

2023  Jan: 13 beads (2L+5M+5S+1XS) or 4.2mgai; Feb: 12 beads (2L+4M+5S+1XS) or 3.9mgai; Mar: 11 beads (2L+4M+4S+1XS) or 3.6mgai, Apr: 10 beads (2L+3M+4S+1XS) or 3.3mgai; Jun: 9 beads (2L+3M+3S+1XS) or 3mgai,

 

Current: July, 2023: Effexor XR -  9 beads (2L+3M+3S+1XS) or 2.7 mgai

Other current meds: Ambien 10mg 3.935mg , clonazepam .125mg .107mg, omeprazoleSynthroid, Premarin.  Supplements: D3, C, probiotic, K2-MK7, Mg Glycinate

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  • Mentor

Hello, I’m sorry to hear about your severe WD. I notice you have tried 1mg, 0.8mg and now 0.6mg. I have seen Mods recommend people stick with a dose and avoid changing doses as that can increase kindling. I am not experienced enough to tell you what to do and really, no one can, but I can say that frequently changing dose in the hope of finding the perfect one won’t work and could make things worse. Your body needs stability and time so it is best to stick with a dose for several months.  Suggest you tag an experienced Mod for a suggestion (read other posts to find a Mod who is active). 
 

How are you feeling on 0.6mg?

am not a medical professional. I provide information and make suggestions based on my own experience and SA guidelines. I am unable to respond to private messages. 

Mirtazepine 15mg Nov 2018 -April 2019  April - Sept 2019 Mirtazepine down to around 6mg - skipping days to taper

October 2019 - Dec 2019 unwell from failed taper including jumping about in doses 

15 December 2019 to 13 June 2021 15mg Mirtazepine 

14 June 2021 started brass monkey Slide.  
2021: 23 August 12.3mg, 28 October 11.1mg, 6 Dec 10mg

2022: 12 Feb 8.5, 25 Oct 4.5mg

2023: 16 Jan 3.6mg, 28 Sept 1.8mg

2024: 13 May 1.1mg

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18 hours ago, FindRest said:

Here you go. Otherwise, it’s under Browse/Forums in the site’s menu at the top of the page.

 

https://www.survivingantidepressants.org/forums/forum/28-success-stories-recovery-from-psychiatric-drug-withdrawal/

Thank you FindRest 🙏

30 year history AD history

multiple drugs over the years

Zoloft, Cymbalta, Pristiq, Brintillex etc etc

Prozac last 10 plus years

Tapered relatively slowly (clearly not slow enough!) twice unsuccessfully - both times very delayed withdrawals

Recently learnt about hyperbolic tapering, kindling and reinstating at very low levels.

Unfortunately it has been 6 months since my last dose so concerned reinstatement may not work for me

Have reinstated @1mg- terrible WD and worse on reinstatement

reduced to 0.8mg for 12 days- worsening withdrawals

Wish I knew what to do- reduce more, cease entirely or hold whilst living in hell?

 

Link to comment
10 hours ago, Faure said:

Hello, I’m sorry to hear about your severe WD. I notice you have tried 1mg, 0.8mg and now 0.6mg. I have seen Mods recommend people stick with a dose and avoid changing doses as that can increase kindling. I am not experienced enough to tell you what to do and really, no one can, but I can say that frequently changing dose in the hope of finding the perfect one won’t work and could make things worse. Your body needs stability and time so it is best to stick with a dose for several months.  Suggest you tag an experienced Mod for a suggestion (read other posts to find a Mod who is active). 
 

How are you feeling on 0.6mg?

Thanks Faure 🙏 the reason I dropped was because I noticed 2 more new symptoms appear immediately upon reinstatement.  I re-read Altostrata's piece about reinstatement and it said that the longer you have been off medication the lower the initial reinstatement should be to avoid kindling- I have been off for 6 months. I started to re-instate at 1mg and had an immediate worsening so dropped to 0.8 for 12 days during that time I experienced chills and fever and akathisia on top of my usual symptoms. Wondered if I should increase slightly since 12 days had passed so went to 1mg again and I had a really dreadful day. That's when I re-read Altostrata's advice which stated to only start at 0.5mg not 1 mg like I did initially. I figured maybe with the time that had passed that it was possible my receptors had upregulated slightly and a smaller dose would have been smarter and so I decided to settle on 0.6 (not too big a change from 0.8) I was finding it difficult to distinguish between kindling and worsening WD symptoms but it felt wrong to be ignoring the obvious worsening. I still don't know what the right approach is, but at this point, Im going to try to hold until I stabilise here at 0.6 unless I get different advice. I'm also monitoring things daily and whilst I'm no where near stable and it's only been 2 days on 0.6, I have not had the really severe akathisia (it's been milder) and the chills and fever are less today than they were, so I'm hoping that's progress.
Thanks also for your suggestion to tag an experienced moderator- Do you know any? Unfortunately I'm not that familiar with how to tag one even if I knew one. 
 

30 year history AD history

multiple drugs over the years

Zoloft, Cymbalta, Pristiq, Brintillex etc etc

Prozac last 10 plus years

Tapered relatively slowly (clearly not slow enough!) twice unsuccessfully - both times very delayed withdrawals

Recently learnt about hyperbolic tapering, kindling and reinstating at very low levels.

Unfortunately it has been 6 months since my last dose so concerned reinstatement may not work for me

Have reinstated @1mg- terrible WD and worse on reinstatement

reduced to 0.8mg for 12 days- worsening withdrawals

Wish I knew what to do- reduce more, cease entirely or hold whilst living in hell?

 

Link to comment
  • Mentor
Posted (edited)
3 hours ago, MB72 said:

whilst I'm no where near stable and it's only been 2 days on 0.6, I have not had the really severe akathisia (it's been milder) and the chills and fever are less today than they were, so I'm hoping that's progress.


This is a good sign. I too reinstated at 6 months. The key for me was to hold my dose as long as I possibly could. No going up and down, up and down. The advice I got here at the time was to start at a very low dose. I recorded my symptoms on paper and here so others could see the symptoms I was having and help me know what to do next. You can review my thread to see how that process went.

 

When I reinstated, my symptoms got a bit better for a few days, then started to get rough again. I tried to hold this dose as long as I could. I think they asked me to try and hold for a week or so before deciding if I wanted to increase the dose by a tiny fraction. I made this decision by asking myself, “If this is the best it gets, am I willing to feel like this for the near future?” If the answer was no, I increased a bit, then waited another week or two if I could. When things eased up, like it appears they have for you, I held for a very long time (6 months). It took this long and even longer to sort of stabilize. I say sort of because I tried dropping a bead after those 6 months and symptoms got bad again. I then held for another 3 months for a total of 9. I never raised my dose once I lowered it. I held, held, held.

 

In the beginning of reinstatement, the way I knew to stop increasing the dose was when I raised it by a bead or so and the symptoms started getting terrible again after a few day and then I didn’t get much of any relief by increasing it. I knew then to stop increasing and hold. I didn’t go back down, but held and waited those symptoms out.

 

To reinstate, it is key that you understand you will have bad symptoms. It won’t get rid of everything, or even much in the beginning. It’s a very slow process. But, you should notice some of your symptoms SLIGHTLY improving within the first days or week or two. You’ve seen some of those improvements. It’ll be a roller coaster up and down, so don’t get freaked out if the symptoms start getting rough again. That’s how it works. 
 

Make sure you’re keeping a daily symptoms log, noting the times you take your meds, and how you’re feeling throughout the day noting the times there as well. It’s important to get a feel for when your symptoms get worse or better, and what those symptoms are. This will also help you see progress you have made.

 

Good luck. Reinstatement at 6 months can be done. It’s just going to take a ton of patience and resolution on your part, and a lot of not over-reacting when things get tough again. You can’t be switching doses up and down. I stuck to going in one direction (updosing) and when I didn’t like the results, I stopped and held at that dose … for many months. 

Edited by FindRest

1988-1996  Various AD’s, all classifications.  1996-2019  Effexor XR 37.5mg to 150mg. Jan 2017 onward, 37.5 mg.

2019  Apr 11 - July 24: Trials of Latuda then Rexulti. CT'd off per dr.  Jul 24: CT Effexor (per dr)  Sep 9-19: Viibryd, CT (per dr).  Sep 23-27: Trintellix. CT (per dr).  Sep 28 - Oct 24:  Prozac 10mg.  Oct 24:  Stop Prozac, began Pristiq 25mg->50->25mg.

2020  Feb 1: CT Pristiq. Feb 1: Reinstated Effexor XR (10 large beads) gradually increasing to 22 beads (15L+7M) or 9.072mgai on Mar, 2020.

2021  Started Jan w 21 beads (13L+8M) or 8.47mgai ended Dec: 17 beads (7L+9M+1S) or 6.19mgai. Severe COVID + TIA.

2022  Ended yr w 14 beads (3L+5M+5S+1XS) or 4.5mgai. Major jaw injury during year + family tragedy.

2023  Jan: 13 beads (2L+5M+5S+1XS) or 4.2mgai; Feb: 12 beads (2L+4M+5S+1XS) or 3.9mgai; Mar: 11 beads (2L+4M+4S+1XS) or 3.6mgai, Apr: 10 beads (2L+3M+4S+1XS) or 3.3mgai; Jun: 9 beads (2L+3M+3S+1XS) or 3mgai,

 

Current: July, 2023: Effexor XR -  9 beads (2L+3M+3S+1XS) or 2.7 mgai

Other current meds: Ambien 10mg 3.935mg , clonazepam .125mg .107mg, omeprazoleSynthroid, Premarin.  Supplements: D3, C, probiotic, K2-MK7, Mg Glycinate

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  • Administrator
4 hours ago, MB72 said:

I still don't know what the right approach is, but at this point, Im going to try to hold until I stabilise here at 0.6 unless I get different advice.

 

Yes, it's a best guess at 6 months out. That said, I was reading in the Maudsley Deprescribing guide today that it is possible to reinstate at 6 months; it's just less predictable, hence you start very low to see how you go. The maximum taper per month is normally 10%. I understand why you did more in your case.

 

I'm grateful to @Faure & @FindRest for jumping in 👍 If you want to tag someone, just put the @ sign before their name, as I did for Faure and FindRest.

 

Months down the track once you are stable (I waited 5 or 6 months), then you need to read up on tapering: Why taper by 10% of my dosage? The reductions should get smaller and smaller each month, for example: 10mg, 9mg, 8.1mg, 7.3mg etc. Importantly, if you develop unpleasant side effects from tapering, halt the taper, give yourself time to settle, and once stable, taper more slowly and by smaller amounts moving forward.

 

Time and much patience are required...Let us know how you are going.

 

Emonda

 

 

Please don't send me PMs. I am not a doctor. My comments are based on my personal experience with ADs and tapering. Consult your doctor about your own medical decisions.

Start of taper: Jan ’22 Vortioxetine 15mg, 

End year 1: 4.5mg, 

End year 2: 2.38mg, 

Year 3: 19 Jan 2.33mg, 26 Jan 2.28mg, 2 Feb 2.24mg, 8 Feb 2.19mg, 29 Feb 2.15mg, 7 Mar 2.10mg, 14 Mar 2.06mg, 21 Mar 1.99mg, 10 Apr 1.95mg, 17 Apr 1.91mg, 24 Apr 1.87mg, 1 May 1.83mg, 23 May 1.80mg, 30 May 1.76mg, 8 Jun 1.72mg, 13 Jun 1.66mg, 3 Jul 1.62mg, 10 Jul 1.58mg, 17 Jul 1.54mg, 23 Jul 1.50mg

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  • Mentor
4 hours ago, MB72 said:

Thanks Faure 🙏 the reason I dropped was because I noticed 2 more new symptoms appear immediately upon reinstatement.  I re-read Altostrata's piece about reinstatement and it said that the longer you have been off medication the lower the initial reinstatement should be to avoid kindling- I have been off for 6 months. I started to re-instate at 1mg and had an immediate worsening so dropped to 0.8 for 12 days during that time I experienced chills and fever and akathisia on top of my usual symptoms. Wondered if I should increase slightly since 12 days had passed so went to 1mg again and I had a really dreadful day. That's when I re-read Altostrata's advice which stated to only start at 0.5mg not 1 mg like I did initially. I figured maybe with the time that had passed that it was possible my receptors had upregulated slightly and a smaller dose would have been smarter and so I decided to settle on 0.6 (not too big a change from 0.8) I was finding it difficult to distinguish between kindling and worsening WD symptoms but it felt wrong to be ignoring the obvious worsening. I still don't know what the right approach is, but at this point, Im going to try to hold until I stabilise here at 0.6 unless I get different advice. I'm also monitoring things daily and whilst I'm no where near stable and it's only been 2 days on 0.6, I have not had the really severe akathisia (it's been milder) and the chills and fever are less today than they were, so I'm hoping that's progress.
Thanks also for your suggestion to tag an experienced moderator- Do you know any? Unfortunately I'm not that familiar with how to tag one even if I knew one. 

 

Hi, which drug did you reinstate, Prozac/Fluoxetine? Fluoxetine is supposed to be very activating, as is my Venlafaxine. When I reinstated Venlafaxin, I got a lot of anxiety and insomnia, but it's getting better now.

 

I think Altostrata's advise in the reinstatement thread deals with citalopram (if I rememer correctly) and under the assumption that 20mg were taken before. Dose strength of citalopram and fluoxetine are supposed to be similar (40mg fluoxetine =~ 36mg citalopram). I think time and the dose you are coming from are important to consider.

I find it helpful to imagine where you would have been with a slow 10% taper instead. For example if you were on 10mg fluoxetine, a careful taper would have led you to 5.3mg and this is the place where you should be. However since you CT'ed your body and brain have moved further and you have to estimate where in the range of 0-5.3 you are right now. This estimation is difficult and the best bet probably varies individually. When you reinstate you will most likely experience stress from two factors: On the one hand there will be still withdrawal and on the other hand the reinstatement itself will put strain on your brain. In my case I reinstated pretty high and think my withdrawal symptoms disappeared immediately however I experienced a lot of tension, anxiety and insomnia from that strain of reinstatement. You will somehow have to balance those 2 factors out and be gentle with your self, not jumping doses. After reinstatement adjust your dose not more than once a week and only in little steps.

 

Earlier drug history:

Paroxetine  2001 until 2003, quit cold turkey, don't remember dose; Venlafaxine 2005 until Dez. 2023, mostly 75mg xr per day, for about 4 years 37.5mg xr; quite a lot of Antihistamines because of allergy; there were other drugs that I don't remember all, but nothing what I consistently took over a longer period of time, for example Lorazepam 0.5mg prn.

Recent developments:

Dez 2023 - 03/13/2024 quitting Venlafaxine 75mg (skipping doses); 04/07/2024 reinstating Venlafaxine 12,5mg; 04/17/2024 Venlafaxine 25mg; 4/29/24 until 5/4/24 Trimipramine, 5mg going down to zero over 5 days

Drugs right now:

Venlafaxine 25mg; supplements: 500mg magnesium, 100mg aspirin and melatonin spray

 

I am no medical expert. I am dependent on Venlafaxine, trying to find and give peer support in this community and simply giving my opinion. Double check any information before you take action, for example with your doctor.

 

First they sell addictive drugs as harmless and then they leave you alone dosing fractions of a mg correctly or plunging into the abyss.

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  • Mentor

Sorry, I now read that you came off 3-5mg Fluoxetine in October 2023. (Hope I got that right.)

 

There is another important thing about Fluoxetine. It has a long half-life and it takes about 2-4 weeks taking fluoxetine before you get a stable drug level in your body. Therefore it is much more difficult to assess the effects of dose changes with fluoxetine and you will have to wait longer in between steps. When you start taking 0.5mg Fluoxetine it's simply not the same as having taken 0.5mg Fluoxetine for 4 weeks.

Earlier drug history:

Paroxetine  2001 until 2003, quit cold turkey, don't remember dose; Venlafaxine 2005 until Dez. 2023, mostly 75mg xr per day, for about 4 years 37.5mg xr; quite a lot of Antihistamines because of allergy; there were other drugs that I don't remember all, but nothing what I consistently took over a longer period of time, for example Lorazepam 0.5mg prn.

Recent developments:

Dez 2023 - 03/13/2024 quitting Venlafaxine 75mg (skipping doses); 04/07/2024 reinstating Venlafaxine 12,5mg; 04/17/2024 Venlafaxine 25mg; 4/29/24 until 5/4/24 Trimipramine, 5mg going down to zero over 5 days

Drugs right now:

Venlafaxine 25mg; supplements: 500mg magnesium, 100mg aspirin and melatonin spray

 

I am no medical expert. I am dependent on Venlafaxine, trying to find and give peer support in this community and simply giving my opinion. Double check any information before you take action, for example with your doctor.

 

First they sell addictive drugs as harmless and then they leave you alone dosing fractions of a mg correctly or plunging into the abyss.

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@MB72 Same here, 14 years SSRI tapered off too fast, 3 months off severe WD. Thinking about reinstatement 7 months off, tried once before.
Agree, difficult to know the right approach. Should you endure…hard to tell if it’s worsening WD, kindling or adverse effect.

All you want is stability, but it takes time no matter which way you go.

I have no advice but just want to say that I relate to all of this, you’re not alone.
Wishing you strength and healing… 🌿

2008 Zoloft 50mg 

2022 May - 62,5mg (doctor wanted to increase). Felt sick, went back to 50mg efter 2 weeks

2022 Oct - Reducing dose to 37,5mg (from 50mg). WD in few days, advised to go back to 50 - I then got adverse worse paradoxical effect

2022 Oct - Zoloft 50mg adverse reaction

2023 May 5th - Reducing dose to 25mg (directly from 50mg by Dr, WD).

2023 Aug 1st - Reducing dose to 12,5mg 

2023 Oct 10th - Removed dose from 12mg to zero by Dr. Reinstated 2,5mg citalopram after 3 months, bad reaction. Reinstated 0,5mg zoloft for 6 days after 7 months, didn’t work. In terrible WD.

 

 

 


 

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On 5/9/2024 at 6:39 PM, FindRest said:


This is a good sign. I too reinstated at 6 months. The key for me was to hold my dose as long as I possibly could. No going up and down, up and down. The advice I got here at the time was to start at a very low dose. I recorded my symptoms on paper and here so others could see the symptoms I was having and help me know what to do next. You can review my thread to see how that process went.

 

When I reinstated, my symptoms got a bit better for a few days, then started to get rough again. I tried to hold this dose as long as I could. I think they asked me to try and hold for a week or so before deciding if I wanted to increase the dose by a tiny fraction. I made this decision by asking myself, “If this is the best it gets, am I willing to feel like this for the near future?” If the answer was no, I increased a bit, then waited another week or two if I could. When things eased up, like it appears they have for you, I held for a very long time (6 months). It took this long and even longer to sort of stabilize. I say sort of because I tried dropping a bead after those 6 months and symptoms got bad again. I then held for another 3 months for a total of 9. I never raised my dose once I lowered it. I held, held, held.

 

In the beginning of reinstatement, the way I knew to stop increasing the dose was when I raised it by a bead or so and the symptoms started getting terrible again after a few day and then I didn’t get much of any relief by increasing it. I knew then to stop increasing and hold. I didn’t go back down, but held and waited those symptoms out.

 

To reinstate, it is key that you understand you will have bad symptoms. It won’t get rid of everything, or even much in the beginning. It’s a very slow process. But, you should notice some of your symptoms SLIGHTLY improving within the first days or week or two. You’ve seen some of those improvements. It’ll be a roller coaster up and down, so don’t get freaked out if the symptoms start getting rough again. That’s how it works. 
 

Make sure you’re keeping a daily symptoms log, noting the times you take your meds, and how you’re feeling throughout the day noting the times there as well. It’s important to get a feel for when your symptoms get worse or better, and what those symptoms are. This will also help you see progress you have made.

 

Good luck. Reinstatement at 6 months can be done. It’s just going to take a ton of patience and resolution on your part, and a lot of not over-reacting when things get tough again. You can’t be switching doses up and down. I stuck to going in one direction (updosing) and when I didn’t like the results, I stopped and held at that dose … for many months. 

@FindRest Thank you so much for writing this. It is very helpful to hear other people's experiences and comforting to know I am not alone. There are some really good tips there and I will keep them in mind. It also helps to hear how long you held for. I think the not knowing contributes to the stress of it all.

 

30 year history AD history

multiple drugs over the years

Zoloft, Cymbalta, Pristiq, Brintillex etc etc

Prozac last 10 plus years

Tapered relatively slowly (clearly not slow enough!) twice unsuccessfully - both times very delayed withdrawals

Recently learnt about hyperbolic tapering, kindling and reinstating at very low levels.

Unfortunately it has been 6 months since my last dose so concerned reinstatement may not work for me

Have reinstated @1mg- terrible WD and worse on reinstatement

reduced to 0.8mg for 12 days- worsening withdrawals

Wish I knew what to do- reduce more, cease entirely or hold whilst living in hell?

 

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On 5/9/2024 at 8:00 PM, Emonda said:

 

Yes, it's a best guess at 6 months out. That said, I was reading in the Maudsley Deprescribing guide today that it is possible to reinstate at 6 months; it's just less predictable, hence you start very low to see how you go. The maximum taper per month is normally 10%. I understand why you did more in your case.

 

I'm grateful to @Faure & @FindRest for jumping in 👍 If you want to tag someone, just put the @ sign before their name, as I did for Faure and FindRest.

 

Months down the track once you are stable (I waited 5 or 6 months), then you need to read up on tapering: Why taper by 10% of my dosage? The reductions should get smaller and smaller each month, for example: 10mg, 9mg, 8.1mg, 7.3mg etc. Importantly, if you develop unpleasant side effects from tapering, halt the taper, give yourself time to settle, and once stable, taper more slowly and by smaller amounts moving forward.

 

Time and much patience are required...Let us know how you are going.

 

Emonda

 

 

Thanks for the tips @Emonda I will definitely let you know how I go. :)

30 year history AD history

multiple drugs over the years

Zoloft, Cymbalta, Pristiq, Brintillex etc etc

Prozac last 10 plus years

Tapered relatively slowly (clearly not slow enough!) twice unsuccessfully - both times very delayed withdrawals

Recently learnt about hyperbolic tapering, kindling and reinstating at very low levels.

Unfortunately it has been 6 months since my last dose so concerned reinstatement may not work for me

Have reinstated @1mg- terrible WD and worse on reinstatement

reduced to 0.8mg for 12 days- worsening withdrawals

Wish I knew what to do- reduce more, cease entirely or hold whilst living in hell?

 

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On 5/9/2024 at 8:40 PM, Alfred1977 said:

Sorry, I now read that you came off 3-5mg Fluoxetine in October 2023. (Hope I got that right.)

 

There is another important thing about Fluoxetine. It has a long half-life and it takes about 2-4 weeks taking fluoxetine before you get a stable drug level in your body. Therefore it is much more difficult to assess the effects of dose changes with fluoxetine and you will have to wait longer in between steps. When you start taking 0.5mg Fluoxetine it's simply not the same as having taken 0.5mg Fluoxetine for 4 weeks.

Hi @Alfred1977 Thanks for your messages. Yes it is fluoxetine and yes I think it was about 3-5mg when I took my last dose. I was just emptying amounts out of my capsule and roughly eyeballing it (big mistake but I was feeling fine and had no idea about delayed withdrawal) It is so tricky with its long half life and I realise it is a much kinder withdrawal than other SSRIs, but it is so deceptive with the delay. I will definitely do any future taper super slowly with at least 8-12 weeks between any adjustment. I've realised its a very long game.

30 year history AD history

multiple drugs over the years

Zoloft, Cymbalta, Pristiq, Brintillex etc etc

Prozac last 10 plus years

Tapered relatively slowly (clearly not slow enough!) twice unsuccessfully - both times very delayed withdrawals

Recently learnt about hyperbolic tapering, kindling and reinstating at very low levels.

Unfortunately it has been 6 months since my last dose so concerned reinstatement may not work for me

Have reinstated @1mg- terrible WD and worse on reinstatement

reduced to 0.8mg for 12 days- worsening withdrawals

Wish I knew what to do- reduce more, cease entirely or hold whilst living in hell?

 

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On 5/10/2024 at 1:14 AM, Dahlia50 said:

@MB72 Same here, 14 years SSRI tapered off too fast, 3 months off severe WD. Thinking about reinstatement 7 months off, tried once before.
Agree, difficult to know the right approach. Should you endure…hard to tell if it’s worsening WD, kindling or adverse effect.

All you want is stability, but it takes time no matter which way you go.

I have no advice but just want to say that I relate to all of this, you’re not alone.
Wishing you strength and healing… 🌿

@Dahlia50 It was so lovely to receive your message- just to know you can relate. Your message really did make me feel like I am not alone. I can't believe you're in Norway and we are having similar experiences- It seems there is such a serious worldwide problem that is still not being addressed by the medical profession. I'm sorry to hear you are having a dreadful time too with a failed reinstatement. I wish you lots of strength and healing too. I think we are in this for the long haul. Please let me know how you go. I will follow your posts, so please don't feel obligated to, I will be cheering you on from down under regardless. Best of luck 🌺

30 year history AD history

multiple drugs over the years

Zoloft, Cymbalta, Pristiq, Brintillex etc etc

Prozac last 10 plus years

Tapered relatively slowly (clearly not slow enough!) twice unsuccessfully - both times very delayed withdrawals

Recently learnt about hyperbolic tapering, kindling and reinstating at very low levels.

Unfortunately it has been 6 months since my last dose so concerned reinstatement may not work for me

Have reinstated @1mg- terrible WD and worse on reinstatement

reduced to 0.8mg for 12 days- worsening withdrawals

Wish I knew what to do- reduce more, cease entirely or hold whilst living in hell?

 

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  • Mentor

I”m glad you’re starting to feel slightly better at 0.6. Remember there is no magic dose that can make things go away completely, so don’t fall into the trap of changing doses in the hope of finding the perfect one. It sounds like this one is good enough.  Now you just have to wait to stabilise. I hope it happens for you soon 🤞

 

re Mods, there has been a big staffing change recently and I’m not up to date with who is active. Things are much better for me now so I’m not on here often at all anymore. But if you look through recent threads you’ll see who is active. But it sounds like things are slowly stabilising so perhaps you’re ok for the moment. Stick with this dose, no alcohol, no other drugs (legal or illegal!!!) and try to minimise stress.  Also no vigorous exercise as that can exacerbate symptoms. Gentle walking if you can manage it is best. 

am not a medical professional. I provide information and make suggestions based on my own experience and SA guidelines. I am unable to respond to private messages. 

Mirtazepine 15mg Nov 2018 -April 2019  April - Sept 2019 Mirtazepine down to around 6mg - skipping days to taper

October 2019 - Dec 2019 unwell from failed taper including jumping about in doses 

15 December 2019 to 13 June 2021 15mg Mirtazepine 

14 June 2021 started brass monkey Slide.  
2021: 23 August 12.3mg, 28 October 11.1mg, 6 Dec 10mg

2022: 12 Feb 8.5, 25 Oct 4.5mg

2023: 16 Jan 3.6mg, 28 Sept 1.8mg

2024: 13 May 1.1mg

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