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xiaoxiao: 19 years on Prozac, 2 years off ... waves and windows are terrifying


xiaoxiao

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After 19 years of 10mg of Fluoxetine, I finally had the wherewithal to get off of it. I knew shortly after starting it that it wasn't doing much, if anything, to help my depressive symptoms, but each time I tried to get off of it I had horrible withdrawal and so, went back on.

 

After my daughter graduated high school and went off to college I figured I could suffer through the withdrawal. I was 50 years old when I went off... 52 now and has been almost exactly 2 years. My main withdrawal symptom was really horrible depression accompanied by anhedonia, and anxiety.

 

When I went off the dp's I also got really healthy. I eat really well (no sugar, no gluten, very few carbs, lots of OG veggies and meat, very high quality supplements (fish oil, a multi with methylated folate as I am compound heterozygous for MTHFR). I engage in moderate exercise often (run or hike 5 times/wk). No caffeine or alcohol for years now. I feel like I have done everything in my power to get through this.

 

In May, I had what they used to call a "nervous breakdown" , ie. became completely dysregulated and ended up in the ER and then in an acute psych facility. This was never something I thought I would go through. I've always been "high functioning". But now I've come to see that the "high function" was just layers and layer of coping mechanisms that served to cover up the real psychological problems underneath. Fluoxetine just made it easier to add on more layers and not FEEL.

 

When I got out of the psych facility I decided to try a promising treatment called rTMS that got FDA approval in 2008. My insurance didn't cover it so $10,000 went on my credit card. It took 6 weeks for the full treatment which definitely changed my brain function. I was having non-stop suicidal ideation when I went in and almost none when I finished treatment. I was waking each morning with the most dystopic feelings... and the feelings didn't seem to come from thoughts but were just in my body when I awoke. Those also decreased in intensity by quite a bit. Also, I could work through emotional issues much better and basically felt like life might be worth living (some day).

 

That all sounds fairly optimistic... but now I'm in the waves and windows and I have no idea what's what. Some days I feel like I could go to a job and work but then I'll have 4 or 5 days where I feel like my function has dipped so low that I might never "participate" in the world again. It's helped reading your posts but it also fills me dread when I read about people who have been off dp's for 6.5 years and are just now feeling "normal". I don't feel like I will make it to year 6. Any words of wisdom are greatly appreciated.

 

 

Edited by Songbird
make paragraphs

Zoloft (?mg) for 2 to 3 wks in 1993. Couldn't tolerate side effects. Paxil (?mg) after the 2 to 3 weeks on Zoloft. Once again couldn't tolerate side effects. No antidepressants until spring of 1998. Went on 10mg of Prozac. Tried (maybe) 8 different times to taper off Prozac but each time had no support from Doctors and failed. Tried other ad's in it's place several times over the 19 years I was on it. The only one I remember well was Celexa (?mg) felt like I was on cocaine and went back on Prozac. Stayed on same mg of Prozac for 19 years because couldn't tolerate side effects of increased dosage (the worst of which was a systemic 'buzzing' of my nervous system). Finally tapered off Prozac in August of 2016 very unscientifically. Decreased from 10 mg/day everyday to 10mg/day 4 days, 0mg 1 day for several weeks. Then down to 3 days on, 1 day off for several weeks. 2 on 1 off same... 1 on 1 off same. This process took me around 2 months as I remember although it might have been a faster taper than that.

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  • ChessieCat changed the title to xiaoxiao: 19 years on Prozac, 2 years off ... waves and windows are terrifying
  • Moderator Emeritus

Hi xiaoxiao, welcome to SA.  When you say you "went off" the fluoxetine - did you taper down the dose or stop cold turkey?

 

It would be helpful if you could create a signature containing a summary of your med history, including all drugs, doses and dates (starting and stopping).  Your signature appears below every post you make, and helps us see your situation easily without having to read from the top every time.   You could look at my signature for an example.  Instructions for creating your signature are here: Please put your withdrawal history in your signature.  You can edit your signature here: edit your signature in Account Settings.

 

I'm sorry to hear you had a "nervous breakdown".  Did you manage to avoid being given more meds in the psych facility?  It's great to see you've created a very healthy lifestyle to help you through.  It sounds like you're doing all the right things to help your system recover.

 

I found it very interesting to read about your rTMS experience.  We have a topic about it here: TMS (Transcranial Magnetic Stimulation).  It seems to have helped some members but others have had some quite negative experiences.  I'm glad it has helped to alleviate some of your symptoms.

 

I'm afraid I don't have any words of great wisdom for you.  I think in general the best we can do is develop a toolkit of coping tools to draw on as needed during the recovery process.  There are a lot of good links here: Non-drug techniques to cope with emotional symptoms.

 

Please post all your updates and questions about your situation here in your introduction topic.  Hopefully other members will chime in here soon to share experiences and support.

 

 

2001–2002 paroxetine

2003  citalopram

2004-2008  paroxetine (various failed tapers) 
2008  paroxetine slow taper down to

2016  Aug off paroxetine
2016  citalopram May 20mg  Oct 15mg … slow taper down
2018  citalopram 13 Feb 4.6mg 15 Mar 4.4mg 29 Apr 4.2mg 6 Jul 4.1mg 17 Aug 4.0mg  18 Nov 3.8mg
2019  15 Mar 3.6mg  21 May 3.4mg  26 Dec 3.2mg 

2020  19 Feb 3.0mg 19 Jul 2.9mg 16 Sep 2.8mg 25 Oct 2.7mg 23 Oct 2.6mg 24 Dec 2.5mg

2021   29 Aug 2.4mg   15 Nov 2.3mg

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Your symptoms are very familiar to me. Did you taper off prozac or cold turkey? 

Took prozac 40 mg for 20 years.

January 2017 started cutting down prozac by 12.5% a week. End of February 2017 completely off prozac and withdrawals began.

Currently taking Levothyroxine 75 mcg, Magnesium citrate 200mg,Sage leaf 50mg daily

Amlodipine: October 2017 , discontinued 26 Feb 2019; Candesartan:  26 Feb 2019, 4mg.

Discontinued magnesium citrate 200mg Apr 3rd 2019

Reinstated prozac:  14 Jan 2019, 1mg; 26 Jan, 1.5mg; 4 Feb, 2mg; 16 Feb, 2.5mg; 2 Mar, 3mg; 5 Mar, 2.5mg, 23 Mar, 3 mg; 6 Apr, 3.5mg, 14 Apr 4mg, 23 Apr 5mg, 10 Jul 8mg, 1 Dec 20mg, 1 Apr 2020 40mg 

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I left out some pertinent information and have now added it to my signature. Yes I tapered, but not very intelligently, over the course of maybe a couple of months. I wish I'd known about this website then. I felt totally alone and unsupported by the medical community. My naturopath wasn't really any help either. I'm really hoping that I will start to feel better after 2 years off of it. 

Zoloft (?mg) for 2 to 3 wks in 1993. Couldn't tolerate side effects. Paxil (?mg) after the 2 to 3 weeks on Zoloft. Once again couldn't tolerate side effects. No antidepressants until spring of 1998. Went on 10mg of Prozac. Tried (maybe) 8 different times to taper off Prozac but each time had no support from Doctors and failed. Tried other ad's in it's place several times over the 19 years I was on it. The only one I remember well was Celexa (?mg) felt like I was on cocaine and went back on Prozac. Stayed on same mg of Prozac for 19 years because couldn't tolerate side effects of increased dosage (the worst of which was a systemic 'buzzing' of my nervous system). Finally tapered off Prozac in August of 2016 very unscientifically. Decreased from 10 mg/day everyday to 10mg/day 4 days, 0mg 1 day for several weeks. Then down to 3 days on, 1 day off for several weeks. 2 on 1 off same... 1 on 1 off same. This process took me around 2 months as I remember although it might have been a faster taper than that.

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  • Mentor
On 8/22/2018 at 4:09 PM, xiaoxiao said:

This was never something I thought I would go through. I've always been "high functioning". But now I've come to see that the "high function" was just layers and layer of coping mechanisms that served to cover up the real psychological problems underneath. Fluoxetine just made it easier to add on more layers and not FEEL.

Well put, @xiaoxiao. I realized recently that my "nervous breakdown" was precipitated by putting myself in situations that were way too stressful for my nervous system. Like a rock formation, the strata increased layer by layer until I broke after a series of traumatic events in short succession. I was not on drugs yet. Then I went on sertraline because I just wanted to be out of the pain. Fast forward seven years later and the pain is different but definitely worse after (almost) 17 months of  WD. I eat healthy too and do yoga. Like Songbird recommended, I work on strengthening the toolkit of non-drug coping skills. I wish I had more words of wisdom for you but sounds like you're doing everything right and just in the thick of it still. Hang in there!

  • Prozac | late 2004-mid-2005 | CT WD in a couple months, mostly emotional
  • Sertraline 50-100mg | 11/2011-3/2014, 10/2014-3/2017
  • Sertraline fast taper March 2017, 4 weeks, OFF sertraline April 1, 2017
  • Quit alcohol May 20, 2017
  • Lifestyle changes: AA, kundalini yoga

 

"If you've seen a monster, even if it's horrible, that's evidence of divinity." – Damien Echols

 

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Thanks for your post FarmGirlWorks. I am going to start yoga next week as all my therapists have told me it may be the best way to get trauma out of the body. I also have a very regular meditation practice of 30 to 120 min/day for 3 years. It helps a lot but I think movement is key too. I just started reading Kelly Brogan's book A Mind of Your Own. She is a psychiatrist who specializes in getting people OFF their psych meds (imagine that!!). I'll be posting about what I find in her book if it seems helpful. 

Zoloft (?mg) for 2 to 3 wks in 1993. Couldn't tolerate side effects. Paxil (?mg) after the 2 to 3 weeks on Zoloft. Once again couldn't tolerate side effects. No antidepressants until spring of 1998. Went on 10mg of Prozac. Tried (maybe) 8 different times to taper off Prozac but each time had no support from Doctors and failed. Tried other ad's in it's place several times over the 19 years I was on it. The only one I remember well was Celexa (?mg) felt like I was on cocaine and went back on Prozac. Stayed on same mg of Prozac for 19 years because couldn't tolerate side effects of increased dosage (the worst of which was a systemic 'buzzing' of my nervous system). Finally tapered off Prozac in August of 2016 very unscientifically. Decreased from 10 mg/day everyday to 10mg/day 4 days, 0mg 1 day for several weeks. Then down to 3 days on, 1 day off for several weeks. 2 on 1 off same... 1 on 1 off same. This process took me around 2 months as I remember although it might have been a faster taper than that.

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  • Mentor

@xiaoxiao: Spoiler alert: the book is really, really good. Please write a review when you finish it to remind me of the highlights. Her mission -- to keep people off psych drugs through health -- is radical. Truly, in this system, it is.

 

Wow: 120min of meditation is *for real.* Congrats on that. I do 11 minutes of kundalini (utilizes chanting and mudras) meditation for anxiety. Also go to class a few times a week. Movement is def helpful. I used to run too (now I have a motor disability and cannot) but yoga (at that time vinyasa) added the component of "mind/spirit" to the action. I miss running, though. Sometimes I dream about it. I think it was how I kept my anxiety at bay for so many years. Not being able to run and break a sweat has definitely affected my mind. Yes, I swim in the winter and can do the stupid machines at the gym but I miss it greatly.

  • Prozac | late 2004-mid-2005 | CT WD in a couple months, mostly emotional
  • Sertraline 50-100mg | 11/2011-3/2014, 10/2014-3/2017
  • Sertraline fast taper March 2017, 4 weeks, OFF sertraline April 1, 2017
  • Quit alcohol May 20, 2017
  • Lifestyle changes: AA, kundalini yoga

 

"If you've seen a monster, even if it's horrible, that's evidence of divinity." – Damien Echols

 

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  • Moderator Emeritus

Thanks for creating a signature, but I am confused by it. You've written:  "Finally tapered off Prozac in August of 2006".  Do you mean 2016?

2001–2002 paroxetine

2003  citalopram

2004-2008  paroxetine (various failed tapers) 
2008  paroxetine slow taper down to

2016  Aug off paroxetine
2016  citalopram May 20mg  Oct 15mg … slow taper down
2018  citalopram 13 Feb 4.6mg 15 Mar 4.4mg 29 Apr 4.2mg 6 Jul 4.1mg 17 Aug 4.0mg  18 Nov 3.8mg
2019  15 Mar 3.6mg  21 May 3.4mg  26 Dec 3.2mg 

2020  19 Feb 3.0mg 19 Jul 2.9mg 16 Sep 2.8mg 25 Oct 2.7mg 23 Oct 2.6mg 24 Dec 2.5mg

2021   29 Aug 2.4mg   15 Nov 2.3mg

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Thanks Songbird. Yes, it was 2016 and I just edited my signature. 

Zoloft (?mg) for 2 to 3 wks in 1993. Couldn't tolerate side effects. Paxil (?mg) after the 2 to 3 weeks on Zoloft. Once again couldn't tolerate side effects. No antidepressants until spring of 1998. Went on 10mg of Prozac. Tried (maybe) 8 different times to taper off Prozac but each time had no support from Doctors and failed. Tried other ad's in it's place several times over the 19 years I was on it. The only one I remember well was Celexa (?mg) felt like I was on cocaine and went back on Prozac. Stayed on same mg of Prozac for 19 years because couldn't tolerate side effects of increased dosage (the worst of which was a systemic 'buzzing' of my nervous system). Finally tapered off Prozac in August of 2016 very unscientifically. Decreased from 10 mg/day everyday to 10mg/day 4 days, 0mg 1 day for several weeks. Then down to 3 days on, 1 day off for several weeks. 2 on 1 off same... 1 on 1 off same. This process took me around 2 months as I remember although it might have been a faster taper than that.

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Like you i get scared when i read posts from people who are still suffering years down the line.

Took prozac 40 mg for 20 years.

January 2017 started cutting down prozac by 12.5% a week. End of February 2017 completely off prozac and withdrawals began.

Currently taking Levothyroxine 75 mcg, Magnesium citrate 200mg,Sage leaf 50mg daily

Amlodipine: October 2017 , discontinued 26 Feb 2019; Candesartan:  26 Feb 2019, 4mg.

Discontinued magnesium citrate 200mg Apr 3rd 2019

Reinstated prozac:  14 Jan 2019, 1mg; 26 Jan, 1.5mg; 4 Feb, 2mg; 16 Feb, 2.5mg; 2 Mar, 3mg; 5 Mar, 2.5mg, 23 Mar, 3 mg; 6 Apr, 3.5mg, 14 Apr 4mg, 23 Apr 5mg, 10 Jul 8mg, 1 Dec 20mg, 1 Apr 2020 40mg 

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Yes. It's scary to read posts about 6 year recoveries. And I think it's actually really important that we not put time limits on this process. Just keep cultivating self love and patience. We will get better and we need to trust in that process. That's what I feeling tonight anyway. :)

Zoloft (?mg) for 2 to 3 wks in 1993. Couldn't tolerate side effects. Paxil (?mg) after the 2 to 3 weeks on Zoloft. Once again couldn't tolerate side effects. No antidepressants until spring of 1998. Went on 10mg of Prozac. Tried (maybe) 8 different times to taper off Prozac but each time had no support from Doctors and failed. Tried other ad's in it's place several times over the 19 years I was on it. The only one I remember well was Celexa (?mg) felt like I was on cocaine and went back on Prozac. Stayed on same mg of Prozac for 19 years because couldn't tolerate side effects of increased dosage (the worst of which was a systemic 'buzzing' of my nervous system). Finally tapered off Prozac in August of 2016 very unscientifically. Decreased from 10 mg/day everyday to 10mg/day 4 days, 0mg 1 day for several weeks. Then down to 3 days on, 1 day off for several weeks. 2 on 1 off same... 1 on 1 off same. This process took me around 2 months as I remember although it might have been a faster taper than that.

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  • Moderator Emeritus
20 minutes ago, xiaoxiao said:

Yes. It's scary to read posts about 6 year recoveries. And I think it's actually really important that we not put time limits on this process. Just keep cultivating self love and patience. We will get better and we need to trust in that process. That's what I feeling tonight anyway. :)

 

Hi xiaoxiao, 

 

You have a great attitude. Yes, we definitely can’t put time limits on this process. All we can do is take each day as it comes n do the best we can do to get through this day. One moment at a time. We will all get there in the end.

 

Keep up that positivity 💚

Been on antipsychotics, benzos, ADs and opiates for chronic pain. 

Was cold turkeyed and put on and off lots of things. Was suicidal n ended up in a psych ward due to akathisia from WDs. When released I still had severe akathisia n was suicidal. Back to the ward and more meds. Tapered off one and have been trying to taper off Seroquel since. Many years of tapering. 

Tapered from 300mg of Seroquel to 7.5mg./2019:➡️ March 10=7.25mg ✔️  
April 17=7.0✔️ June 5th=6.75✔️ July 14th=6.50✔️Aug 28=6.25✔️

Oct 10=6.20 ✔️ Oct21=6.0✔️Dec16=5.80 ✔️                                
 2020➡️Jan 21=5.60✔️April 2=5.40✔️May 29=5.20✔️Aug14= 5.0 ✔️Sep 29=4.80✔️
 2021➡️ Jan 31=4.60 mg✔️April 24=4.40mg✔️Jul17=4.30mg ✔️Aug 28=4.20✔️ Oct 11=4.15✔️Nov 1=4.10✔️ Nov 21= 4.05✔️ Dec 13= 4mg✔️

  2022➡️Jan 8= 3.95 Jan 31=3.90✔️March 2=3.85✔️ April 4= 3.80✔️I AM NOT A MEDICAL PROFESSIONAL. These are my own views based on what I’ve experienced myself.

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