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mockingbird: Did it all wrong...Now what?


mockingbird

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Hi, everyone. I'm new to this forum and so glad I found it because now I'm starting to understand what's wrong with me and that there are others like me. 

 

But I'm also horrified at the seriousness and uncertainness of all of this. I'm also kind of angry at myself for taking myself off of medication without knowing how to do it properly. 

 

My story is long, but just skip to the end for the question I have.

 

See my signature for drug history. In July 2013, I took myself off of Wellbutrin and Seqroquel. The Wellbutrin i basically stopped cold turkey (I believe I cut my dose in half and took it for 1 week before I just stopped.) I didn't notice any withdrawal effects for the Wellbutrin. The Seroquel was hard to wean myself off of. At first I tried taking it every 2 days but had withdrawal symptoms (nausea, runny nose). So then over the next 6-7 weeks, I tried tapering it by cutting up the pills I had left. I started at 200mg, then took 150mg for 3 days, then 100mg for 2 weeks, 50mg for 2 weeks, 25mg for~2 weeks then stopped. Basically I reduced by 50% every 2 weeks, and I now realize I did it all wrong.

 

About 2 months after my last dose, I awoke suddenly one night with severe nausea and then shaking,  shortness of breath, stuffy nose and insomnia. (It is possible I was launched into panic by noticing initial symptoms and knowing that I had no one home to help me). Over the next days it felt like by chest and nasal passages/sinuses tightened up, making it feel very hard to breathe. I went to 2 doctors--1 gave me antibiotics with a diagnosis of possible mild bronchitis after hearing slight rattling in my lungs, and the other gave me a nasal steroid spray with a diagnosis of allergies after noticing a lot of fluid in my ears. Neither helped.

 

Symptoms gradually improved (except for still feeling like I had bad allergies) from September 2013-December 2013, until they started getting worse mid-December. For a couple weeks I noticed I was getting sharp jolt-like chest pains. Then things got dramatically worse Christmas Eve. Again, it is possible anxiety launched my body into full-blown panic. After 24 hours of feeling like I couldn't breathe and sharp chest pains, I went to the ER. They thought it was basic anxiety and wanted to put me back on some kind of meds, but I refused, by this time with a suspicion my symptoms were related to the meds I was on and never wanting to take them again. Things were really bad (I hardly slept at all for a few weeks and felt like I couldn't breathe for months).

 

I have been slowly recovering since my rebound symptoms in December 2013. I still feel bad, just less bad.

 

My question is: after doing some reading (especially http://webcache.googleusercontent.com/search?client=safari&rls=en&q=cache:bYx3vNZH3IUJ:http://www.jptcp.com/cjcp_04-032_e69-r101631%2Btardive+insomnia&oe=UTF-8&hl=en&&ct=clnk ), it seems that rebound symptoms do not go away unless the original medication is restarted. After 1 1/2 years of being off the med(s), do I restart them and then taper off them correctly? Or would going back just mess with my system more and jeopardize the progress I have made?

 

My deepest gratitude for anyone who can empathize or point me in the right direction. Peace to all of you.

 

Zoloft: 2003-2004/05 (about 1-2 years)
No symptoms except mild anxiety (can't tell if from withdrawal or not)
Prozac: Dec. 2006-Summer 2008 (about 1.5 years)
Celexa: Summer 2008-April 2009 (6 months-1 year)
Wellbutrin: April 2009-July 2013 (4-4.5 years) highest dose 400 mg
Abilify: tried briefly around 2011
Seroquel: Summer 2012-July 2013 (about 1 year)
Tapered Seroquel 200 mg and Wellbutrin May - July 2013
Sudden onset of symptoms: September 2013, worsened December 2013
Gradually improving December 2013-present
Trazodone: Jan 2014 (tried for about 1 month for sleep)
Supplements: Jan 2014-present

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  • Moderator Emeritus

Hi Mockingbird,

 

Welcome to SA, sorry to meet you under such circumstances.   Unfortunately reinstatement so far out is really unpredictable, it might help, it might harm.   Here is a thread related to reinstatement - http://survivingantidepressants.org/index.php?/topic/3079-about-reinstating-and-stabilizing-to-stop-withdrawal-symptoms/

 

If it was me I wouldn't risk reinstatement.  I say this because 1) your nervous system has had a lot of instability and you may be very sensitive to psychotropic meds now that you have gone into withdrawal and 2) you are seeing some improvement.   Recovery isnt linear but I would stay the course and hope that the times you feel better increase and the times you dont feel great decrease.

 

you might also want to poke around our symptoms forum to see other alternatives for addressing symptoms

 

Dalsaan

Please note - I am not a medical practitioner and I do not give medical advice. I offer an opinion based on my own experiences, reading and discussion with others.On Effexor for 2 months at the start of 2005. Had extreme insomnia as an adverse reaction. Changed to mirtazapine. Have been trying to get off since mid 2008 with numerous failures including CTs and slow (but not slow enough tapers)Have slow tapered at 10 per cent or less for years. I have liquid mirtazapine made at a compounding chemist.

Was on 1.6 ml as at 19 March 2014.

Dropped to 1.5 ml 7 June 2014. Dropped to 1.4 in about September.

Dropped to 1.3 on 20 December 2014. Dropped to 1.2 in mid Jan 2015.

Dropped to 1 ml in late Feb 2015. I think my old medication had run out of puff so I tried 1ml when I got the new stuff and it seems to be going ok. Sleep has been good over the last week (as of 13/3/15).

Dropped to 1/2 ml 14/11/15 Fatigue still there as are memory and cognition problems. Sleep is patchy but liveable compared to what it has been in the past.

 

DRUG FREE - as at 1st May 2017

 

>My intro post is here - http://survivingantidepressants.org/index.php?/topic/2250-dalsaan

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  • Moderator Emeritus

That study was interesting, but they were really talking about withdrawal symptoms appearing one month after a cold turkey of paroxetine.  Their theory about the cause being a shortage of serotonin is also a bit suspect, as if this was the case, treatment with tryptophan or 5HTP would help withdrawal, and we have seen that this usually doesn't work well for those in CT w/d from SSRIs, so there must be more going on than just low serotonin levels.  Seroquel is not an SSRI, but we know that anti-psychotic meds can also have their withdrawal syndromes.

 

In any case, at this far out and if you have been slowly recovering, I would not reinstate.  You are likely to get more recovery over time.  Recovery tends to happen in a "waves and windows" pattern (see:  http://survivingantidepressants.org/index.php?/topic/82-the-windows-and-waves-pattern-of-recovery/).  So if you do have another bad patch, it is likely to be temporary.

 

You have been on a lot of different meds - what was your original diagnosis?

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 July 2.9mg  16 Sep 2.8mg  25 Oct 2.7mg

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  • Moderator

Hey Mock,

 

I did it all wrong, too.  So exhausted right now, but will check in on you again.  Just wanted you to know you are not alone in f***ing up your taper from lack of knowing what was happening to you.  The doctors should have protected us.  They didn't.  We didn't mess up.  They did, the FDA did, and the pharmaceutical companies did.

**I'm not a doctor and don't give medical advice, merely personal experience
***Off all meds since Nov. 2014. Mentally & emotionally recovered; physically not
-Dual cold turkeys off TCA & Ativan in Oct 2014. Prescribed from 2011-2014

-All meds were Rxed off-label for an autoimmune illness.  It was a MISDIAGNOSIS, but I did not find out until AFTER meds caused damage.  All med tapers/cold turkeys directed by doctors 

-Nortriptyline May 2012 - Dec 2013. Cold turkey off nortrip & cold switched to desipramine

-Desipramine Jan 2014 - Oct. 29, 2014 (rapid taper/cold turkey)

-Lorazepam 1 mg per night during 2011
-Lorazepam 1 mg per month in 2012 (or less)

-Lorazepam on & off, Dec 2013 through Aug 2014. Didn't exceed 3x a week

-Lorazepam again in Oct. 2014 to help get off of desipramine. Last dose lzpam was 1 mg, Nov. 2, 2014. Immediate paradoxical reactions to benzos after stopping TCAs 

-First muscle/dystonia side effects started on nortriptyline, but docs too stupid to figure it out. On desipramine, muscle tremors & rigidity worsened

-Two weeks after I got off all meds, I developed full-blown TD.  Tardive dystonia, dyskinesia, myoclonic jerks ALL over body, ribcage wiggles, facial tics, twitching tongue & fingers, tremors/twitches of arms, legs, cognitive impairment, throat muscles semi-paralyzed & unable to swallow solid food, brain zaps, ears ring, dizzy, everything looks too far away, insomnia, numbness & electric shocks everywhere when I try to fall asleep, jerk awake from sleep with big, gasping breaths, wake with terrors & tremors, severely depressed.  NO HISTORY OF DEPRESSION, EVER. Meds CREATED it.

-Month 7: hair falling out; no vision improvement; still tardive dystonia; facial & tongue tics returned
-Month 8: back to acute, incl. Grand Mal seizure-like episodes. New mental torment, PGAD, worse insomnia
-Month 9: tardive dystonia worse, dyskinesia returned. Unable to breathe well due to dystonia in stomach, chest, throat
-Month 13: Back to acute, brain zaps back, developed eczema & stomach problems. Left leg no longer works right due to dystonia, meaning both legs now damaged
-4 years off: Huge improvements, incl. improved dystonia

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  • Moderator

If you are less bad, that is, believe it or not, GREAT news. 

**I'm not a doctor and don't give medical advice, merely personal experience
***Off all meds since Nov. 2014. Mentally & emotionally recovered; physically not
-Dual cold turkeys off TCA & Ativan in Oct 2014. Prescribed from 2011-2014

-All meds were Rxed off-label for an autoimmune illness.  It was a MISDIAGNOSIS, but I did not find out until AFTER meds caused damage.  All med tapers/cold turkeys directed by doctors 

-Nortriptyline May 2012 - Dec 2013. Cold turkey off nortrip & cold switched to desipramine

-Desipramine Jan 2014 - Oct. 29, 2014 (rapid taper/cold turkey)

-Lorazepam 1 mg per night during 2011
-Lorazepam 1 mg per month in 2012 (or less)

-Lorazepam on & off, Dec 2013 through Aug 2014. Didn't exceed 3x a week

-Lorazepam again in Oct. 2014 to help get off of desipramine. Last dose lzpam was 1 mg, Nov. 2, 2014. Immediate paradoxical reactions to benzos after stopping TCAs 

-First muscle/dystonia side effects started on nortriptyline, but docs too stupid to figure it out. On desipramine, muscle tremors & rigidity worsened

-Two weeks after I got off all meds, I developed full-blown TD.  Tardive dystonia, dyskinesia, myoclonic jerks ALL over body, ribcage wiggles, facial tics, twitching tongue & fingers, tremors/twitches of arms, legs, cognitive impairment, throat muscles semi-paralyzed & unable to swallow solid food, brain zaps, ears ring, dizzy, everything looks too far away, insomnia, numbness & electric shocks everywhere when I try to fall asleep, jerk awake from sleep with big, gasping breaths, wake with terrors & tremors, severely depressed.  NO HISTORY OF DEPRESSION, EVER. Meds CREATED it.

-Month 7: hair falling out; no vision improvement; still tardive dystonia; facial & tongue tics returned
-Month 8: back to acute, incl. Grand Mal seizure-like episodes. New mental torment, PGAD, worse insomnia
-Month 9: tardive dystonia worse, dyskinesia returned. Unable to breathe well due to dystonia in stomach, chest, throat
-Month 13: Back to acute, brain zaps back, developed eczema & stomach problems. Left leg no longer works right due to dystonia, meaning both legs now damaged
-4 years off: Huge improvements, incl. improved dystonia

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Hello Mockingbird,

 

I'm new to this site but was connected to another which served the same purpose, and which taught me a lot.  Good people, good knowledge.  Not as much knowledge as others here, but enought to know a few things.  I'm 18 months into my taper and things are improving.  Also wanted to introduce myself and say hi.  

 

I'm with Wigglelt as to your question, and 18 months out is a long time.  I wouldn't re-instate, and you are improving. This is a long slow process with many ups and down, windows and waves.  I'd just ride it out, which is all we are left with in the long run if we want off these drugs.

 

Hang in Mockingbird.

 

steeley

Prescribed 30mg Mirtazapine approximately 10 years ago.  PTSD 

 

C/T 50% of dose - dreadful, hellish

Begin to reduce by 10% every 3-6 weeks

now:

5.11.14 4.50mg - going to wait a bit longer

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This sounds so blimmin miserable for you Mockingbird. At this stage maybe you concentrate on connecting with all the people here who understand you're not crazy or imagining things and then think in terms of making monthly slow improvements rather than hoping for daily xxxxx

 

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 agree, it's too risky to reinstate this far out.  Better to maintain the healing you've already achieved (and you have, believe it or not) and keep moving forward.

Paxil 20mg 1994-2005
Tried to quit twice, finally did it on my 3rd attempt in 2005.

I went from 20mg to zero in about four months, believing at the time that it was a reasonable taper.  It wasn't.  I suffered mostly emotional symptoms: frequent episodes of "anxious depression" lasting for about 17 months before it got noticeably better.

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Hi Mockingbird,

 

Welcome to SA, sorry to meet you under such circumstances.   Unfortunately reinstatement so far out is really unpredictable, it might help, it might harm.   Here is a thread related to reinstatement - http://survivingantidepressants.org/index.php?/topic/3079-about-reinstating-and-stabilizing-to-stop-withdrawal-symptoms/

 

If it was me I wouldn't risk reinstatement.  I say this because 1) your nervous system has had a lot of instability and you may be very sensitive to psychotropic meds now that you have gone into withdrawal and 2) you are seeing some improvement.   Recovery isnt linear but I would stay the course and hope that the times you feel better increase and the times you dont feel great decrease.

 

you might also want to poke around our symptoms forum to see other alternatives for addressing symptoms

 

Dalsaan

Hi Dalsaan,

Thanks so much for responding so quickly and pointing me to that thread--it was very helpful. I saw your response right away and it made me feel better to have someone respond.

Zoloft: 2003-2004/05 (about 1-2 years)
No symptoms except mild anxiety (can't tell if from withdrawal or not)
Prozac: Dec. 2006-Summer 2008 (about 1.5 years)
Celexa: Summer 2008-April 2009 (6 months-1 year)
Wellbutrin: April 2009-July 2013 (4-4.5 years) highest dose 400 mg
Abilify: tried briefly around 2011
Seroquel: Summer 2012-July 2013 (about 1 year)
Tapered Seroquel 200 mg and Wellbutrin May - July 2013
Sudden onset of symptoms: September 2013, worsened December 2013
Gradually improving December 2013-present
Trazodone: Jan 2014 (tried for about 1 month for sleep)
Supplements: Jan 2014-present

Link to post

That study was interesting, but they were really talking about withdrawal symptoms appearing one month after a cold turkey of paroxetine.  Their theory about the cause being a shortage of serotonin is also a bit suspect, as if this was the case, treatment with tryptophan or 5HTP would help withdrawal, and we have seen that this usually doesn't work well for those in CT w/d from SSRIs, so there must be more going on than just low serotonin levels.  Seroquel is not an SSRI, but we know that anti-psychotic meds can also have their withdrawal syndromes.

 

In any case, at this far out and if you have been slowly recovering, I would not reinstate.  You are likely to get more recovery over time.  Recovery tends to happen in a "waves and windows" pattern (see:  http://survivingantidepressants.org/index.php?/topic/82-the-windows-and-waves-pattern-of-recovery/).  So if you do have another bad patch, it is likely to be temporary.

 

You have been on a lot of different meds - what was your original diagnosis?

Hi Songbird,

 

Thanks for your comments on the study. I really just posted it because the study was the closest one I found so far that relates to my experience (appearance of symptoms about 2 months after no drugs, body being in a state of persistent panic).

 

I'm not exactly sure what my original official diagnosis was, since I was put on meds when I was 10, which later made me believe that I actually did have clinical depression and caused me to decide to start taking them again from ages 14-21. When I was 10, my teachers were concerned I might have depression and maybe social anxiety, basically because I was so quiet and didn't seem that interested in school even though I got all A's and B's. I now realize there was nothing wrong with me and that I never should have been put on any meds.

Zoloft: 2003-2004/05 (about 1-2 years)
No symptoms except mild anxiety (can't tell if from withdrawal or not)
Prozac: Dec. 2006-Summer 2008 (about 1.5 years)
Celexa: Summer 2008-April 2009 (6 months-1 year)
Wellbutrin: April 2009-July 2013 (4-4.5 years) highest dose 400 mg
Abilify: tried briefly around 2011
Seroquel: Summer 2012-July 2013 (about 1 year)
Tapered Seroquel 200 mg and Wellbutrin May - July 2013
Sudden onset of symptoms: September 2013, worsened December 2013
Gradually improving December 2013-present
Trazodone: Jan 2014 (tried for about 1 month for sleep)
Supplements: Jan 2014-present

Link to post

Hey Mock,

 

I did it all wrong, too.  So exhausted right now, but will check in on you again.  Just wanted you to know you are not alone in f***ing up your taper from lack of knowing what was happening to you.  The doctors should have protected us.  They didn't.  We didn't mess up.  They did, the FDA did, and the pharmaceutical companies did.

Hi WiggleIt,

 

Glad to hear from someone in the same boat. It's tempting for me to be angry about all of it, but I am trying my best not to be. I realize now, that even though I've suffered a lot with this, this experience has all been for my good. 

 

These forums have made me realize I'm actually doing pretty well with all of this, since when I look around at what everyone else my age is doing (I'm 22 and just finished college), I feel damaged and hopeless.

Zoloft: 2003-2004/05 (about 1-2 years)
No symptoms except mild anxiety (can't tell if from withdrawal or not)
Prozac: Dec. 2006-Summer 2008 (about 1.5 years)
Celexa: Summer 2008-April 2009 (6 months-1 year)
Wellbutrin: April 2009-July 2013 (4-4.5 years) highest dose 400 mg
Abilify: tried briefly around 2011
Seroquel: Summer 2012-July 2013 (about 1 year)
Tapered Seroquel 200 mg and Wellbutrin May - July 2013
Sudden onset of symptoms: September 2013, worsened December 2013
Gradually improving December 2013-present
Trazodone: Jan 2014 (tried for about 1 month for sleep)
Supplements: Jan 2014-present

Link to post

Hello Mockingbird,

 

I'm new to this site but was connected to another which served the same purpose, and which taught me a lot.  Good people, good knowledge.  Not as much knowledge as others here, but enought to know a few things.  I'm 18 months into my taper and things are improving.  Also wanted to introduce myself and say hi.  

 

I'm with Wigglelt as to your question, and 18 months out is a long time.  I wouldn't re-instate, and you are improving. This is a long slow process with many ups and down, windows and waves.  I'd just ride it out, which is all we are left with in the long run if we want off these drugs.

 

Hang in Mockingbird.

 

steeley

Hi steeley,

 

Nice to meet you, and thank you for your response. I'm glad to hear from someone else about as far out from their taper as I am. It seems the consensus from everyone is not to reinstate. I'm happy to be completely off all drugs even though I still don't feel great. You hang in there too!

Zoloft: 2003-2004/05 (about 1-2 years)
No symptoms except mild anxiety (can't tell if from withdrawal or not)
Prozac: Dec. 2006-Summer 2008 (about 1.5 years)
Celexa: Summer 2008-April 2009 (6 months-1 year)
Wellbutrin: April 2009-July 2013 (4-4.5 years) highest dose 400 mg
Abilify: tried briefly around 2011
Seroquel: Summer 2012-July 2013 (about 1 year)
Tapered Seroquel 200 mg and Wellbutrin May - July 2013
Sudden onset of symptoms: September 2013, worsened December 2013
Gradually improving December 2013-present
Trazodone: Jan 2014 (tried for about 1 month for sleep)
Supplements: Jan 2014-present

Link to post

This sounds so blimmin miserable for you Mockingbird. At this stage maybe you concentrate on connecting with all the people here who understand you're not crazy or imagining things and then think in terms of making monthly slow improvements rather than hoping for daily xxxxx

Hi MollyN,

 

At least I am less miserable than I was. It is good to find others who can empathize, though I don't like to consume myself thinking about all of it (I actually had to take a break from reading the forums because it was giving me anxiety--I've become a bit of a hypochondriac after my experience).

Zoloft: 2003-2004/05 (about 1-2 years)
No symptoms except mild anxiety (can't tell if from withdrawal or not)
Prozac: Dec. 2006-Summer 2008 (about 1.5 years)
Celexa: Summer 2008-April 2009 (6 months-1 year)
Wellbutrin: April 2009-July 2013 (4-4.5 years) highest dose 400 mg
Abilify: tried briefly around 2011
Seroquel: Summer 2012-July 2013 (about 1 year)
Tapered Seroquel 200 mg and Wellbutrin May - July 2013
Sudden onset of symptoms: September 2013, worsened December 2013
Gradually improving December 2013-present
Trazodone: Jan 2014 (tried for about 1 month for sleep)
Supplements: Jan 2014-present

Link to post

I agree, it's too risky to reinstate this far out.  Better to maintain the healing you've already achieved (and you have, believe it or not) and keep moving forward.

Hi Babs,

 

Thanks for your opinion. That seems to be the consensus. I do realize now I'm doing better than I thought and that I just need to be patient with myself. 

Zoloft: 2003-2004/05 (about 1-2 years)
No symptoms except mild anxiety (can't tell if from withdrawal or not)
Prozac: Dec. 2006-Summer 2008 (about 1.5 years)
Celexa: Summer 2008-April 2009 (6 months-1 year)
Wellbutrin: April 2009-July 2013 (4-4.5 years) highest dose 400 mg
Abilify: tried briefly around 2011
Seroquel: Summer 2012-July 2013 (about 1 year)
Tapered Seroquel 200 mg and Wellbutrin May - July 2013
Sudden onset of symptoms: September 2013, worsened December 2013
Gradually improving December 2013-present
Trazodone: Jan 2014 (tried for about 1 month for sleep)
Supplements: Jan 2014-present

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