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Survivor1: sleeping after trazodone (and benzo)


Survivor1

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Survivor. I'm checking in with the other Mods to possibly get a consensus of opinion on your situation.

Many SSRI's and SSNRI's over 20 years. Zoloft for 7 years followed by Effexor, Lexapro, Prozac, Cymbalta, Celexa, Pristiq, Valdoxan, Mianserin and more - on and off. No tapering. Cold turkey off Valdoxan - end of May 2014

 

                                                  Psych Drug - free since May 2014
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Thanks AliG.

 

Also, I reinstated seroquel Dec 7, 2016 and updosed Mirt. Dec 19, 2016 (not October as mentioned in my last post).

PAST

Gabapentin:  about 6 months in 2015, 300-900 mg, cold turkeyed Sept 2015 (at same time dc'd Klonopin)

Klonopin: June 2014- Sept 2015; 1mg tapered over 6 mths, dc'd at 0.25mg, withdrawal hellish (perhaps because of concurrent dc of gabapentin)

Mirtazepine: Jumped off at 2.4 mg. (stable in 8 months).

Seroquel:  June 14 - July 24, 2016, 25 mg alternate nights; smaller doses for shorter periods. Total use about 3 months 

Lamictal: March 19, 2018 - 1 mg; March 23 - 1.25 mg; April 6 - 2mg. Discontinued at 2 mgJuly 1, 2018 due to Steven Johnson Syndrome.

 

CURRENT

Supplements: Vit D, turmeric

Naturethroid: 65 mcg for hypothyroidism

Trazodone: Oct 2015 - June 2016; 75 mg tapered over 2 mths, intense w/d after 3 weeks. Reinstatement: 07/25/16 - 25 mg; updosed 08/03/16 - 50 mg;  10/01/16-  62mg; 03/24/17 dropped to 50 mg (stable in 2.5 months)

                           Current psych meds: Trazodone 50 mg

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  • Administrator

Hello, Survivor.

 

What is your daily symptom pattern relative to when you take your drugs? Please keep daily notes on paper about your symptoms, when you take your drugs, and their dosages.

 

Do you get symptoms at night? Do you get different symptoms during the day? And when?

 

It doesn't sound like you had serotonin syndrome, but maybe an adverse reaction to one of the drugs or a drug combination.

This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner.

"It has become appallingly obvious that our technology has surpassed our humanity." -- Albert Einstein

All postings © copyrighted.

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Hi Altostrata,

 

Thanks for checking up on me.  

 

My current symptoms are muscle twitching/body jerks/brain zaps, low level anxiety, heavy limbs, heart rate spikes, and knee pain.  Of these, the first is the worrisome one with improvements seen in most of the others.

 

None of my sxs show a pattern, they occur at random times.  I get the twitches/jerks at night when I drift off to sleep, in the morning when I awaken, and during the day.  The more unnerving jerks happen when I am at rest especially when trying to take a nap, while twitching can happen when I am fairly active.  I get a twitch in my left inner ear that can be painful and leaves me momentarily disoriented, this happened yesterday while grocery shopping.  (This inner ear twitch I used to get while withdrawing from klonopin and went away after a while.)  I wonder whether this is a movement disorder, or my glutamatergic (sp?) system kicking in.  My worry is that the jerks/twitches seem to be worsening.

 

I take meds around 9:30 - 10:00 pm.

 

Thank you for your input.

PAST

Gabapentin:  about 6 months in 2015, 300-900 mg, cold turkeyed Sept 2015 (at same time dc'd Klonopin)

Klonopin: June 2014- Sept 2015; 1mg tapered over 6 mths, dc'd at 0.25mg, withdrawal hellish (perhaps because of concurrent dc of gabapentin)

Mirtazepine: Jumped off at 2.4 mg. (stable in 8 months).

Seroquel:  June 14 - July 24, 2016, 25 mg alternate nights; smaller doses for shorter periods. Total use about 3 months 

Lamictal: March 19, 2018 - 1 mg; March 23 - 1.25 mg; April 6 - 2mg. Discontinued at 2 mgJuly 1, 2018 due to Steven Johnson Syndrome.

 

CURRENT

Supplements: Vit D, turmeric

Naturethroid: 65 mcg for hypothyroidism

Trazodone: Oct 2015 - June 2016; 75 mg tapered over 2 mths, intense w/d after 3 weeks. Reinstatement: 07/25/16 - 25 mg; updosed 08/03/16 - 50 mg;  10/01/16-  62mg; 03/24/17 dropped to 50 mg (stable in 2.5 months)

                           Current psych meds: Trazodone 50 mg

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I have been keeping a closer attention to my symptoms and noticed that with regard to my heart rate, it is higher during the night and early morning.  It levels out (with a few short spikes) during the day.  Last night my  fitbit said it was in the 80's while sleeping!  This leads me to concur with Alto's observation that it may be an interaction with my drugs or an adverse reaction.

 

I am in no shape to start a taper.  My anxiety is still there, today it is high. In fact I have been having anxiety for at least three months, most of it high, with a few short windows.  I don't know how long I can take it anymore, and any taper will just increase it and make me non-functional.  Has anyone had success with beta or alpha blockers for this.  I am thinking that if the anxiety does not reduce in the next month (I hope I can hang on this long), I need to get help, especially for purposes of tapering.

 

Please let me know of any experience with alpha/beta blockers.  Thanks 

PAST

Gabapentin:  about 6 months in 2015, 300-900 mg, cold turkeyed Sept 2015 (at same time dc'd Klonopin)

Klonopin: June 2014- Sept 2015; 1mg tapered over 6 mths, dc'd at 0.25mg, withdrawal hellish (perhaps because of concurrent dc of gabapentin)

Mirtazepine: Jumped off at 2.4 mg. (stable in 8 months).

Seroquel:  June 14 - July 24, 2016, 25 mg alternate nights; smaller doses for shorter periods. Total use about 3 months 

Lamictal: March 19, 2018 - 1 mg; March 23 - 1.25 mg; April 6 - 2mg. Discontinued at 2 mgJuly 1, 2018 due to Steven Johnson Syndrome.

 

CURRENT

Supplements: Vit D, turmeric

Naturethroid: 65 mcg for hypothyroidism

Trazodone: Oct 2015 - June 2016; 75 mg tapered over 2 mths, intense w/d after 3 weeks. Reinstatement: 07/25/16 - 25 mg; updosed 08/03/16 - 50 mg;  10/01/16-  62mg; 03/24/17 dropped to 50 mg (stable in 2.5 months)

                           Current psych meds: Trazodone 50 mg

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Survivor:
I don't know anything about the blockers, and one the mods will hopefully be here to help you, but it seems not to be a good idea to add another med.  You seem to have had a stretch of varying your meds, in my opinion, it would be good to settle on a dose and not change for a while to stabilize. Then, taper only after you are stabilized. It might be a good idea not to check your fitbit re: things like heart rate as knowing such a level of detail might be making you more anxious. 

200 Zoloft; 10 mg Zyprexa; 4 mg valium as of May 2021;  Valium taper: July 16: 3.5 valium; July 30: 3 mg (paused valium taper); Aug. 23: 2.5 mg
Zyprexa: July 26: 8.75 mg; Aug. 9: 7.5 mg; Aug. 30: 7.1 mg

-------
Dec 1, 2016. 10 mg zyprexa for 1.5 month. Started taper mid-Jan. 2017. Cut 1.25 mg every 2 weeks; smaller cuts 2.5 mg down. Stopped at .6 mg. May 7, 2017: zyprexa free. 
Zoloft: Dec1, 2016, 200 mg. Started taper: Jun12, 2017: 197.5 mg; Jun19,:195 mg; July 2:185mg; July 9,:180 mg; July16,: 175; July 23: 170; July 30: 165; Aug6: 160; Aug13: 155; Aug. 20: 150; Aug.27: 146 mg; Sept3: 145 mg; Sept10:143 mg; Sept17:140 mg....Nov5: 122 mg...Dec3:112.5 mg; Jan14, 2018: 95 mg...Jan28: 90 mg; Feb21:80 mg; Mar11: 75 mg; May2:70 mg; May15: 68 mg; May28: 65 mg; Jun9: 62 mg;Jun25: 60 mg:July22: 55 mg; Aug25: 45 mg. Aug28: 50 mg...Oct 28: 38 mg; Dec.4: 30 mg; Jan8,2019: 25mg; Feb6: 23.5 mg; Apr1:17.5mg; May1:1 mg; May 5: 18;  May 18:15mg; June 16:12.5mg; Sept 10:11 mg; Sept.16:10 mg; Oct. 1: 9mg; Nov. 27: 8mg; Dec.5: 7mg; Jan.1,2020, 6 mg; Feb1: 5 mg; May 1: 2.5 mg; Jn 1: 2 mg; Jy 1: 1.5 mg

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Madeleine,

 

I hear you.  However I have been having the heart palps and anx for over three months, unrelenting.  The blockers were actually suggested by my pdoc who is monitoring the symptoms.  I am trying to wait it out as best I could, because i know that these meds too will need tapering.

 

I understand too about the fitbit.  I only got that about two weeks ago so anx was there a long while before.  I will try not to be reliant on it though for the reason you suggest.

 

Thanks for stopping by with your support!

PAST

Gabapentin:  about 6 months in 2015, 300-900 mg, cold turkeyed Sept 2015 (at same time dc'd Klonopin)

Klonopin: June 2014- Sept 2015; 1mg tapered over 6 mths, dc'd at 0.25mg, withdrawal hellish (perhaps because of concurrent dc of gabapentin)

Mirtazepine: Jumped off at 2.4 mg. (stable in 8 months).

Seroquel:  June 14 - July 24, 2016, 25 mg alternate nights; smaller doses for shorter periods. Total use about 3 months 

Lamictal: March 19, 2018 - 1 mg; March 23 - 1.25 mg; April 6 - 2mg. Discontinued at 2 mgJuly 1, 2018 due to Steven Johnson Syndrome.

 

CURRENT

Supplements: Vit D, turmeric

Naturethroid: 65 mcg for hypothyroidism

Trazodone: Oct 2015 - June 2016; 75 mg tapered over 2 mths, intense w/d after 3 weeks. Reinstatement: 07/25/16 - 25 mg; updosed 08/03/16 - 50 mg;  10/01/16-  62mg; 03/24/17 dropped to 50 mg (stable in 2.5 months)

                           Current psych meds: Trazodone 50 mg

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  • Administrator

Why do you take all 3 drugs at the same time?

This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner.

"It has become appallingly obvious that our technology has surpassed our humanity." -- Albert Einstein

All postings © copyrighted.

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Hi Alto,  I take the drugs for sleep, so all at once has worked so far.  Do you recommend a different timing?

 

Also, yesterday I started a supplement, Taurine 500 mg.  I tried going without any, but my anxiety and elevated heart rate and blood pressure concern me.  I hope to see some relief.  Today I feel very shaky; I am attributing that to wd and not taurine for now.

 

I am worried that I need to reduce Mirtazepine for its interaction with trazodone (rapid heartrate, twitching), but yet feel I am in no state to do begin.  Feeling trapped  :(

 

Thanks.

PAST

Gabapentin:  about 6 months in 2015, 300-900 mg, cold turkeyed Sept 2015 (at same time dc'd Klonopin)

Klonopin: June 2014- Sept 2015; 1mg tapered over 6 mths, dc'd at 0.25mg, withdrawal hellish (perhaps because of concurrent dc of gabapentin)

Mirtazepine: Jumped off at 2.4 mg. (stable in 8 months).

Seroquel:  June 14 - July 24, 2016, 25 mg alternate nights; smaller doses for shorter periods. Total use about 3 months 

Lamictal: March 19, 2018 - 1 mg; March 23 - 1.25 mg; April 6 - 2mg. Discontinued at 2 mgJuly 1, 2018 due to Steven Johnson Syndrome.

 

CURRENT

Supplements: Vit D, turmeric

Naturethroid: 65 mcg for hypothyroidism

Trazodone: Oct 2015 - June 2016; 75 mg tapered over 2 mths, intense w/d after 3 weeks. Reinstatement: 07/25/16 - 25 mg; updosed 08/03/16 - 50 mg;  10/01/16-  62mg; 03/24/17 dropped to 50 mg (stable in 2.5 months)

                           Current psych meds: Trazodone 50 mg

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Update ...

 

02/08 I woke up with zero anxiety!  02/09 followed with zero again.  However, I have noticed that the body jerks I am having are becoming more pronounced in that they now jolt me from sleep, with heart rate ramped up from the shock.  In the past I was at least able to sleep through it.  So even though I have not fully stabilized yet, I thought to try to reduce the mirtazepine.  Last three nights (02/09, 10,11) I went down to 2.35 from 2.4mg.  All went well.  Until today.  Anxiety is fierce, I feel shaky, rash on my back has flared up badly.

 

I am so disheartened.  I have to get off the mirtazepine but my body won't let me.  And the drop was so minuscule!  I will up the dose back to 2.4.

 

I don't know what to do.  I'm caught between a rock and a hard place.

PAST

Gabapentin:  about 6 months in 2015, 300-900 mg, cold turkeyed Sept 2015 (at same time dc'd Klonopin)

Klonopin: June 2014- Sept 2015; 1mg tapered over 6 mths, dc'd at 0.25mg, withdrawal hellish (perhaps because of concurrent dc of gabapentin)

Mirtazepine: Jumped off at 2.4 mg. (stable in 8 months).

Seroquel:  June 14 - July 24, 2016, 25 mg alternate nights; smaller doses for shorter periods. Total use about 3 months 

Lamictal: March 19, 2018 - 1 mg; March 23 - 1.25 mg; April 6 - 2mg. Discontinued at 2 mgJuly 1, 2018 due to Steven Johnson Syndrome.

 

CURRENT

Supplements: Vit D, turmeric

Naturethroid: 65 mcg for hypothyroidism

Trazodone: Oct 2015 - June 2016; 75 mg tapered over 2 mths, intense w/d after 3 weeks. Reinstatement: 07/25/16 - 25 mg; updosed 08/03/16 - 50 mg;  10/01/16-  62mg; 03/24/17 dropped to 50 mg (stable in 2.5 months)

                           Current psych meds: Trazodone 50 mg

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Hello,

 

Can any one of the mods weigh in on my situation.  I am feeling very scared.  I reinstated seroquel after 3 months of the last usage, so I don't know if the jerks are wd or adverse reaction of one/all of the drugs ...

 

Also, Alto had inquired why I was taking the meds all at once.  Should I be taking them differently?  I take them for sleep, so all at once at night made sense.

 

Thanks.

PAST

Gabapentin:  about 6 months in 2015, 300-900 mg, cold turkeyed Sept 2015 (at same time dc'd Klonopin)

Klonopin: June 2014- Sept 2015; 1mg tapered over 6 mths, dc'd at 0.25mg, withdrawal hellish (perhaps because of concurrent dc of gabapentin)

Mirtazepine: Jumped off at 2.4 mg. (stable in 8 months).

Seroquel:  June 14 - July 24, 2016, 25 mg alternate nights; smaller doses for shorter periods. Total use about 3 months 

Lamictal: March 19, 2018 - 1 mg; March 23 - 1.25 mg; April 6 - 2mg. Discontinued at 2 mgJuly 1, 2018 due to Steven Johnson Syndrome.

 

CURRENT

Supplements: Vit D, turmeric

Naturethroid: 65 mcg for hypothyroidism

Trazodone: Oct 2015 - June 2016; 75 mg tapered over 2 mths, intense w/d after 3 weeks. Reinstatement: 07/25/16 - 25 mg; updosed 08/03/16 - 50 mg;  10/01/16-  62mg; 03/24/17 dropped to 50 mg (stable in 2.5 months)

                           Current psych meds: Trazodone 50 mg

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  • Moderator Emeritus

Survivor, I don't know what to suggest in your situation.  I'll ask others to have a look. It's possible that the only way through this is actually through it -- letting your CNS stabilize over time.

 

It is a good sign that you had anxiety-free windows in the mornings a few days ago.

 

A log of your symptoms will help us help you. Please keep notes on paper of your symptoms and the times of your dose(s). This post has a useful format for a daily log:

Take notes of doses and symptoms.

This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner.
1997-1999 Effexor; 2002-2005 Effexor XR 37.5 mg linear taper, dropping same #beads/week with bad results

Cymbalta 60 mg 2012 - 2015; 2016: 20 mg to 7 mg exact doses and dates in this post; 2017: 6.3 mg to  0.0 mg  Aug. 12; details here


scallywag's Introduction
Online spreadsheet for dose taper calculations and nz11's THE WORKS spreadsheet

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  • Administrator

When do the jerks occur? What are they like?

 

Taking 3 drugs at once for sleep is very unusual. As you have observed, you seem to get adverse effects at night. This makes sense, because you are pushing your nervous system down with 3 drugs in the evening. The palpitations and so forth are your nervous system trying not to get mashed.

 

Did the rash start when you started any drug? When does it flare up? Is it worse at any particular time of day?

 

Who prescribed these 3 drugs? How were you instructed to take them?

 

 

This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner.

"It has become appallingly obvious that our technology has surpassed our humanity." -- Albert Einstein

All postings © copyrighted.

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Hello Alto,

 

The jerks happen when I am at rest.  So at night when trying to fall asleep, in the morning upon awakening, and during the day if I try to nap.  They are mainly sharp shoulder twists, strong hand twitches, and head and jaw movements (the last two I have not had in a while), and myoclonus of the left inner ear muscle.  I also get episodes of fasciculations at these times and also at random times during the day.

 

The good news is that the palpitations have calmed down now (touch wood), with heart rate speeding up only when the most sever jerks occur.  

 

The rash I can directly trace to rapid tapering of my drugs.  I had it when I rapid tapered klonopin, then it calmed down.  Also when I rapid tapered trazodone, and then it calmed down again after I reinstated.  This time I am assuming it is from the ct of seroquel/large drop of mirtazepine.  The flareup at this time seems odd in that it has been 5 months since I ct seroquel (reinstated 2 months ago), and 1.5 months since I updosed mirtazepine after a large drop (from 2.4 to 2.1).

 

I was initially prescribed trazodone for sleep to get over klonopin wd.  I rapid tapered trazodone and in the ensuing aftermath, added seroquel to help me sleep.  Then I found this forum.  After reinstating trazodone, I still had strong wd (in hindsight it was seroquel wd but I did not know then) and mirtazepine was added for sleep, thinking that trazodone had pooped out.

 

The intention was to titrate mirtazepine up while I decreased trazodone.  By then I  realized that I was actually in seroquel wd and added 5 mg of seroquel.  So the seroquel was not so much for sleep but to mitigate the other wd effects.  This was Ok with my PCP, since she knew I had the intention of tapering the seroquel as soon as I stabilized.  I have to say that since adding the seroquel, I have seen a lot of improvements.

 

SW, I will do another post with my sxs to avoid this one being too long.

 

Thank you!

PAST

Gabapentin:  about 6 months in 2015, 300-900 mg, cold turkeyed Sept 2015 (at same time dc'd Klonopin)

Klonopin: June 2014- Sept 2015; 1mg tapered over 6 mths, dc'd at 0.25mg, withdrawal hellish (perhaps because of concurrent dc of gabapentin)

Mirtazepine: Jumped off at 2.4 mg. (stable in 8 months).

Seroquel:  June 14 - July 24, 2016, 25 mg alternate nights; smaller doses for shorter periods. Total use about 3 months 

Lamictal: March 19, 2018 - 1 mg; March 23 - 1.25 mg; April 6 - 2mg. Discontinued at 2 mgJuly 1, 2018 due to Steven Johnson Syndrome.

 

CURRENT

Supplements: Vit D, turmeric

Naturethroid: 65 mcg for hypothyroidism

Trazodone: Oct 2015 - June 2016; 75 mg tapered over 2 mths, intense w/d after 3 weeks. Reinstatement: 07/25/16 - 25 mg; updosed 08/03/16 - 50 mg;  10/01/16-  62mg; 03/24/17 dropped to 50 mg (stable in 2.5 months)

                           Current psych meds: Trazodone 50 mg

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Here is my sx log for the past few days:

 

02/12 -  woke up at 5 am, because of strong jerk, HR high as a result.  Strong anxiety 6/10, shakiness 5/10, joint pain 3/10

              morn:  shakiness and anx continue, rash flareup.  Went for 2 mile walk

              afternoon: feeling better, shakiness and anx reduced.  HR normal.  Some jerks while resting

              evening:  faint shakiness and anx, fasciculations with major ear myoclonus episode.

              night: meds at 10 pm

 

02/13 - woke up at 5 then 7.  Anx 4/10. No jerks. Limbs feel very heavy, rash, joint pain 3/10

            morn:  anx 2/10, rash flareup, LOTS of fasciculations all over body (chest, legs, arms)

            afternoon: feeling better, anx reduced to maybe 0.5/10.  HR normal.  

            evening:  zero anx , minor fasciculations with some ear myoclonus

            night: meds at 10 pm

 

02/14 - Woke up at 5:30.  Many jerks and fasciculations.  Anx 3/10, joint pain 3/10

             All day Anx 3/10, HR normal

             Noon: 2 mile walk 

             Evening: Anx zero, minor fasciculations, burn in groin (had this during trazodone rapid taper)

             Night: meds at 9:30

 

2/15 - Woke up at 5:30.  A few twitches but no jerks. Anx zero, joint pain 3/10, rash flareup, HR normal

           Morn: anx 2/10

           Rest of day: zero anx, groin burn, a few mild fasciculations, day felt decent  

           8 pm: Long episode of strong ear myoclonus

           Night:  Meds at 10 

 

2/16 - Woke up at 5.  Strong shoulder and hand jerks, some fasciculations also, including ear myoclonus and click in head.  Anx 3/10, joint pain 3/10, rash

           morn: anx 1/10, HR normal

 

 

Worst sx:  Jerks and fasciculations

Improvements seen:  Anxiety is not constant with some large windows seen, HR mostly normal (at rest low 70's bpm)

Manageable sxs: Joint pain, groin burn, rash, adult acne, diminishing sleep (falling asleep after 11pm, waking around 5 am)

 

As always, thanks very much for all input.

PAST

Gabapentin:  about 6 months in 2015, 300-900 mg, cold turkeyed Sept 2015 (at same time dc'd Klonopin)

Klonopin: June 2014- Sept 2015; 1mg tapered over 6 mths, dc'd at 0.25mg, withdrawal hellish (perhaps because of concurrent dc of gabapentin)

Mirtazepine: Jumped off at 2.4 mg. (stable in 8 months).

Seroquel:  June 14 - July 24, 2016, 25 mg alternate nights; smaller doses for shorter periods. Total use about 3 months 

Lamictal: March 19, 2018 - 1 mg; March 23 - 1.25 mg; April 6 - 2mg. Discontinued at 2 mgJuly 1, 2018 due to Steven Johnson Syndrome.

 

CURRENT

Supplements: Vit D, turmeric

Naturethroid: 65 mcg for hypothyroidism

Trazodone: Oct 2015 - June 2016; 75 mg tapered over 2 mths, intense w/d after 3 weeks. Reinstatement: 07/25/16 - 25 mg; updosed 08/03/16 - 50 mg;  10/01/16-  62mg; 03/24/17 dropped to 50 mg (stable in 2.5 months)

                           Current psych meds: Trazodone 50 mg

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  • Moderator Emeritus

Looking at your notes, here's the pattern I see: The more time that has passed since taking meds the night before, the lighter your symptoms.

 

I think Alto nailed the source of the problem -- taking all three meds at the same time.

This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner.
1997-1999 Effexor; 2002-2005 Effexor XR 37.5 mg linear taper, dropping same #beads/week with bad results

Cymbalta 60 mg 2012 - 2015; 2016: 20 mg to 7 mg exact doses and dates in this post; 2017: 6.3 mg to  0.0 mg  Aug. 12; details here


scallywag's Introduction
Online spreadsheet for dose taper calculations and nz11's THE WORKS spreadsheet

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SW, thanks for your reply.

 

I want to share last night's experience: for the first time since starting all three meds at night, I had terrible sleep. I was constantly awakened every time I drifted off. Usually the sedation from all three drugs is enough to overcome the awakenings, but not this time. HR was over the top, almost had a panic attack.

 

Would you/Alto advise taking one of the drugs in the morning since I am in no state to start reducing any? Any other suggestion is appreciated. I'd like to start immediately, if it's advisable.

 

Thanks for being there for me (and others)!

PAST

Gabapentin:  about 6 months in 2015, 300-900 mg, cold turkeyed Sept 2015 (at same time dc'd Klonopin)

Klonopin: June 2014- Sept 2015; 1mg tapered over 6 mths, dc'd at 0.25mg, withdrawal hellish (perhaps because of concurrent dc of gabapentin)

Mirtazepine: Jumped off at 2.4 mg. (stable in 8 months).

Seroquel:  June 14 - July 24, 2016, 25 mg alternate nights; smaller doses for shorter periods. Total use about 3 months 

Lamictal: March 19, 2018 - 1 mg; March 23 - 1.25 mg; April 6 - 2mg. Discontinued at 2 mgJuly 1, 2018 due to Steven Johnson Syndrome.

 

CURRENT

Supplements: Vit D, turmeric

Naturethroid: 65 mcg for hypothyroidism

Trazodone: Oct 2015 - June 2016; 75 mg tapered over 2 mths, intense w/d after 3 weeks. Reinstatement: 07/25/16 - 25 mg; updosed 08/03/16 - 50 mg;  10/01/16-  62mg; 03/24/17 dropped to 50 mg (stable in 2.5 months)

                           Current psych meds: Trazodone 50 mg

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Hi SW and Alto,  

 

Would you recommend I take one of the drugs at a different time?  I am thinking perhaps mirtazepine at around 6 pm tonight (or 6 am the following morning), then trazodone and seroquel at 9:30?

 

I am really afraid of screwing up as I am trying to be as stable as possible, so am eagerly waiting for your advice.  I don't think I should continue taking them all at once because I feel so bad  at night and in the mornings.

 

Please let me know your thoughts.  Especially after last night, I am feeling extremely scared.

 

Thanks.

PAST

Gabapentin:  about 6 months in 2015, 300-900 mg, cold turkeyed Sept 2015 (at same time dc'd Klonopin)

Klonopin: June 2014- Sept 2015; 1mg tapered over 6 mths, dc'd at 0.25mg, withdrawal hellish (perhaps because of concurrent dc of gabapentin)

Mirtazepine: Jumped off at 2.4 mg. (stable in 8 months).

Seroquel:  June 14 - July 24, 2016, 25 mg alternate nights; smaller doses for shorter periods. Total use about 3 months 

Lamictal: March 19, 2018 - 1 mg; March 23 - 1.25 mg; April 6 - 2mg. Discontinued at 2 mgJuly 1, 2018 due to Steven Johnson Syndrome.

 

CURRENT

Supplements: Vit D, turmeric

Naturethroid: 65 mcg for hypothyroidism

Trazodone: Oct 2015 - June 2016; 75 mg tapered over 2 mths, intense w/d after 3 weeks. Reinstatement: 07/25/16 - 25 mg; updosed 08/03/16 - 50 mg;  10/01/16-  62mg; 03/24/17 dropped to 50 mg (stable in 2.5 months)

                           Current psych meds: Trazodone 50 mg

Link to comment

I know that this is a busy forum, but if SW or Alto could respond I would really appreciate it.  I don't want to seem impatient, but I really would like to make a change this evening, but not mess anything up.  I am desperately trying to stabilize and don't want to make a wrong move.

 

What are your thoughts about when to take the meds.  Should I take one (mirtazepine?) earlier or later.  Thanks.

PAST

Gabapentin:  about 6 months in 2015, 300-900 mg, cold turkeyed Sept 2015 (at same time dc'd Klonopin)

Klonopin: June 2014- Sept 2015; 1mg tapered over 6 mths, dc'd at 0.25mg, withdrawal hellish (perhaps because of concurrent dc of gabapentin)

Mirtazepine: Jumped off at 2.4 mg. (stable in 8 months).

Seroquel:  June 14 - July 24, 2016, 25 mg alternate nights; smaller doses for shorter periods. Total use about 3 months 

Lamictal: March 19, 2018 - 1 mg; March 23 - 1.25 mg; April 6 - 2mg. Discontinued at 2 mgJuly 1, 2018 due to Steven Johnson Syndrome.

 

CURRENT

Supplements: Vit D, turmeric

Naturethroid: 65 mcg for hypothyroidism

Trazodone: Oct 2015 - June 2016; 75 mg tapered over 2 mths, intense w/d after 3 weeks. Reinstatement: 07/25/16 - 25 mg; updosed 08/03/16 - 50 mg;  10/01/16-  62mg; 03/24/17 dropped to 50 mg (stable in 2.5 months)

                           Current psych meds: Trazodone 50 mg

Link to comment
  • Mentor

Hello,

 

Can any one of the mods weigh in on my situation.  I am feeling very scared.  I reinstated seroquel after 3 months of the last usage, so I don't know if the jerks are wd or adverse reaction of one/all of the drugs ...

 

Also, Alto had inquired why I was taking the meds all at once.  Should I be taking them differently?  I take them for sleep, so all at once at night made sense.

 

Thanks.

 

 

hi Survivor,

I was skimming thru your thread and saw you mention the jerks you are experiencing. I don't know if this will help you at all but when I first started to taper off of lexapro (in fact, every time I've tried to taper off it!) I have experienced those muscle spasms and jerks

for me, they were mostly my legs, they would suddenly go flying up in the air! they happened mostly at night (and I always took the lexapro in the morning)

I did have an occasional spasm during the day but usually only if I was laying or sitting still.

 

the funny thing is, they were worse on one side of my body and initially I assumed that they were caused by my spinal stenosis! I didn't know that the stenosis I have can not cause those kinds of dramatic jerks until about a year later, when I saw an ortho doc and told him about them.

 

so most of the time, I thought there were from a known physical problem and so while they did make it harder to get to sleep, they did not scare me or cause me any anxiety at all.

 

and they disappeared when I got down to lower doses. I have not had those jerks or spasms since er, last summer, I guess?

I did recently have some painful spasms in my right ear, so it really caught my attention when you mentioned the same thing in one ear.

 

This is all just to reassure you that as awful as they are, those jerks and spasms ARE going to end, and hopefully sooner rather than later.

 

wishing you speedy healing!

PLEASE DO NOT SEND ME PRIVATE MESSAGES, thank you. 

  • pysch med history: 1974 @ age 18 to Oct 2017 (approx 43 yrs total) 
  •  Drug list: stelazine, haldol, elavil, lithium, zoloft, celexa, lexapro(doses as high as 40mgs), klonopin, ambien, seroquel(high doses), depakote, zyprexa, lamictal- plus brief trials of dozens of other psych meds over the years
  • started lexapro 2002, dose varied from 20mgs to 40mgs. First attempt to get off it was 2007- WD symptoms were mistaken for "relapse". 
  •  2013 too fast taper down to 5mg but WD forced me back to 20mgs
  •  June of 2105, tapered again too rapidly to 2.5mgs by Dec 2015. Found SA, held at 2.5 mgs til May 2016 when I foolishly "jumped off". felt ok until  Sept, then acute WD hit!!  reinstated at 0.3mgs in Oct. 2106
  • Tapered off to zero by  Oct. 2017 Doing very well. 
  • Nov. 2018 feel 95% healed, age 63 
  • Jan. 2020 feel 100% healed, peaceful and content
  • Dec 2023 Loving life! ❤️ with all it's ups and downs ;) 
Link to comment
  • Moderator Emeritus

Usually we suggest shifting a medication by an hour a day. Your mirtazpine dose is 2.4 mg, correct?

 

In your case, try moving the mirtazapine to 6 pm in one step as you suggested. Monitor and log your symptoms while you keep mirt at 6 pm for 4-5 days.

This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner.
1997-1999 Effexor; 2002-2005 Effexor XR 37.5 mg linear taper, dropping same #beads/week with bad results

Cymbalta 60 mg 2012 - 2015; 2016: 20 mg to 7 mg exact doses and dates in this post; 2017: 6.3 mg to  0.0 mg  Aug. 12; details here


scallywag's Introduction
Online spreadsheet for dose taper calculations and nz11's THE WORKS spreadsheet

Link to comment

OK thanks

PAST

Gabapentin:  about 6 months in 2015, 300-900 mg, cold turkeyed Sept 2015 (at same time dc'd Klonopin)

Klonopin: June 2014- Sept 2015; 1mg tapered over 6 mths, dc'd at 0.25mg, withdrawal hellish (perhaps because of concurrent dc of gabapentin)

Mirtazepine: Jumped off at 2.4 mg. (stable in 8 months).

Seroquel:  June 14 - July 24, 2016, 25 mg alternate nights; smaller doses for shorter periods. Total use about 3 months 

Lamictal: March 19, 2018 - 1 mg; March 23 - 1.25 mg; April 6 - 2mg. Discontinued at 2 mgJuly 1, 2018 due to Steven Johnson Syndrome.

 

CURRENT

Supplements: Vit D, turmeric

Naturethroid: 65 mcg for hypothyroidism

Trazodone: Oct 2015 - June 2016; 75 mg tapered over 2 mths, intense w/d after 3 weeks. Reinstatement: 07/25/16 - 25 mg; updosed 08/03/16 - 50 mg;  10/01/16-  62mg; 03/24/17 dropped to 50 mg (stable in 2.5 months)

                           Current psych meds: Trazodone 50 mg

Link to comment

Catnapt,  thanks for the kind words.  I sure hope the spasms go because the one in the left ear is painful and leaves me disoriented.  The other jerks I believe are a side effect of mirtazepine, but I won't know for sure until I investigate by changing the time I take it.

 

Speedy healing to you as well!

PAST

Gabapentin:  about 6 months in 2015, 300-900 mg, cold turkeyed Sept 2015 (at same time dc'd Klonopin)

Klonopin: June 2014- Sept 2015; 1mg tapered over 6 mths, dc'd at 0.25mg, withdrawal hellish (perhaps because of concurrent dc of gabapentin)

Mirtazepine: Jumped off at 2.4 mg. (stable in 8 months).

Seroquel:  June 14 - July 24, 2016, 25 mg alternate nights; smaller doses for shorter periods. Total use about 3 months 

Lamictal: March 19, 2018 - 1 mg; March 23 - 1.25 mg; April 6 - 2mg. Discontinued at 2 mgJuly 1, 2018 due to Steven Johnson Syndrome.

 

CURRENT

Supplements: Vit D, turmeric

Naturethroid: 65 mcg for hypothyroidism

Trazodone: Oct 2015 - June 2016; 75 mg tapered over 2 mths, intense w/d after 3 weeks. Reinstatement: 07/25/16 - 25 mg; updosed 08/03/16 - 50 mg;  10/01/16-  62mg; 03/24/17 dropped to 50 mg (stable in 2.5 months)

                           Current psych meds: Trazodone 50 mg

Link to comment
  • Administrator

Did the spasms and jerks start or get worse after you had been taking Seroquel for a while?

This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner.

"It has become appallingly obvious that our technology has surpassed our humanity." -- Albert Einstein

All postings © copyrighted.

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Alto,

 

My history with the spasms is complicated.  I started having them when I rapid-tapered trazodone last summer.  At that time I was using seroquel to help me sleep for several short stints, each time ct'ing (wasn't aware that I should not be doing this).  So the spasms continued, but not at this intensity.  

 

Fast-forward to November 2016 when I added mirtazepine at a time when I was in seroquel wd from the several ct's (did not quite realize this then).  By then the twitches were becoming stronger.  I finally decided to add a small dose of seroquel in Dec to deal with the wd since the mirtazepine was clearly not the answer.  To complicate this, I changed the dose of mirtazepine several times in Dec because the jerks (and rapid heart rate) convinced me it was serotonin syndrome - false alarm.  The last drop of mirtazepine was from 2.4 to 2.1 mg and it was too much, especially since I was in seroquel wd too.  That is when the intensity of the ear spasms and body jerks shot up.  I tried to counter it by raising the mirtazepine back to its original 2.4 mg (also in Dec) and for a while the ear spasms mellowed out.  But, it's back.  Perhaps there is some improvement in the intensity of the jerks but the fasciculations and ear spasm are still there in full force.

 

So, it is hard to know if the multiple changes in mirtazepine is the cause or using seroquel for two months, or a combination.

 

Whew!

 

PS. I have not moved the time I take mirtazepine yet (see SW's post on 02/17), as I am in a horrible anxiety wave (non-stop for two days now).  I will try the timing change as soon as I am better.

 

Thank you!

PAST

Gabapentin:  about 6 months in 2015, 300-900 mg, cold turkeyed Sept 2015 (at same time dc'd Klonopin)

Klonopin: June 2014- Sept 2015; 1mg tapered over 6 mths, dc'd at 0.25mg, withdrawal hellish (perhaps because of concurrent dc of gabapentin)

Mirtazepine: Jumped off at 2.4 mg. (stable in 8 months).

Seroquel:  June 14 - July 24, 2016, 25 mg alternate nights; smaller doses for shorter periods. Total use about 3 months 

Lamictal: March 19, 2018 - 1 mg; March 23 - 1.25 mg; April 6 - 2mg. Discontinued at 2 mgJuly 1, 2018 due to Steven Johnson Syndrome.

 

CURRENT

Supplements: Vit D, turmeric

Naturethroid: 65 mcg for hypothyroidism

Trazodone: Oct 2015 - June 2016; 75 mg tapered over 2 mths, intense w/d after 3 weeks. Reinstatement: 07/25/16 - 25 mg; updosed 08/03/16 - 50 mg;  10/01/16-  62mg; 03/24/17 dropped to 50 mg (stable in 2.5 months)

                           Current psych meds: Trazodone 50 mg

Link to comment

You're not taking Mirtazapine at 6 pm ? What is your current timing ?    

Many SSRI's and SSNRI's over 20 years. Zoloft for 7 years followed by Effexor, Lexapro, Prozac, Cymbalta, Celexa, Pristiq, Valdoxan, Mianserin and more - on and off. No tapering. Cold turkey off Valdoxan - end of May 2014

 

                                                  Psych Drug - free since May 2014
.
         

Link to comment

Current timing is all meds at 9:30.  (Just fyi, heart rate is back to normal.)  With the timing change I hope to address the jerk/twitches issue.

 

Thanks AliG.

PAST

Gabapentin:  about 6 months in 2015, 300-900 mg, cold turkeyed Sept 2015 (at same time dc'd Klonopin)

Klonopin: June 2014- Sept 2015; 1mg tapered over 6 mths, dc'd at 0.25mg, withdrawal hellish (perhaps because of concurrent dc of gabapentin)

Mirtazepine: Jumped off at 2.4 mg. (stable in 8 months).

Seroquel:  June 14 - July 24, 2016, 25 mg alternate nights; smaller doses for shorter periods. Total use about 3 months 

Lamictal: March 19, 2018 - 1 mg; March 23 - 1.25 mg; April 6 - 2mg. Discontinued at 2 mgJuly 1, 2018 due to Steven Johnson Syndrome.

 

CURRENT

Supplements: Vit D, turmeric

Naturethroid: 65 mcg for hypothyroidism

Trazodone: Oct 2015 - June 2016; 75 mg tapered over 2 mths, intense w/d after 3 weeks. Reinstatement: 07/25/16 - 25 mg; updosed 08/03/16 - 50 mg;  10/01/16-  62mg; 03/24/17 dropped to 50 mg (stable in 2.5 months)

                           Current psych meds: Trazodone 50 mg

Link to comment

Update:

 

On 02/20, I started taking the mirtazepine at 6.  It's been 4 nights and I have not noticed any difference in spasms/jerks.  I will continue for a few more nights to see if it will make a difference.

 

On a good note, I had an anxiety-free day yesterday.  Wow! felt "almost" normal!  I hope this signals a turning point.

On a bad note, I had sharp nerve pain (neuropathy?) in my left big toe.  This is new.  I am surprised.  It was October when I dc seroquel; can sxs appear this late?  Oh well, at least it is not as bad as daily anxiety for 4 months.

PAST

Gabapentin:  about 6 months in 2015, 300-900 mg, cold turkeyed Sept 2015 (at same time dc'd Klonopin)

Klonopin: June 2014- Sept 2015; 1mg tapered over 6 mths, dc'd at 0.25mg, withdrawal hellish (perhaps because of concurrent dc of gabapentin)

Mirtazepine: Jumped off at 2.4 mg. (stable in 8 months).

Seroquel:  June 14 - July 24, 2016, 25 mg alternate nights; smaller doses for shorter periods. Total use about 3 months 

Lamictal: March 19, 2018 - 1 mg; March 23 - 1.25 mg; April 6 - 2mg. Discontinued at 2 mgJuly 1, 2018 due to Steven Johnson Syndrome.

 

CURRENT

Supplements: Vit D, turmeric

Naturethroid: 65 mcg for hypothyroidism

Trazodone: Oct 2015 - June 2016; 75 mg tapered over 2 mths, intense w/d after 3 weeks. Reinstatement: 07/25/16 - 25 mg; updosed 08/03/16 - 50 mg;  10/01/16-  62mg; 03/24/17 dropped to 50 mg (stable in 2.5 months)

                           Current psych meds: Trazodone 50 mg

Link to comment

Another update...

 

A few more days have elapsed, and no improvement in my sxs.  In fact, I feel the jerking/alerting have become more pronounced the last two nights.  

 

The jerks are the most debilitating of my sxs, as they jolt me from sleep with accompanying anxiety (followed by said anxiety for which I have had windows). They are noticeable when I am at rest so usually at night and in the morning when awakening.  It is hard to say if the jerking is an adverse reaction to any of the drugs since night and morning are also the times closest to when I take them.  I get small fasciculations during the day also, but these are manageable.

 

I am a quite disheartened as I was hoping my symptoms would improve, not worsen, by now; it has been almost 3 months since reinstating seroquel and 2.5 months since updosing mirtazepine.  Is there anyone out there who had improvements only after a really long time since reinstatement?

 

A question for the moderators: Any thoughts as to a plan of action: hold, or begin a taper?

 

Thanks very much for listening.

PAST

Gabapentin:  about 6 months in 2015, 300-900 mg, cold turkeyed Sept 2015 (at same time dc'd Klonopin)

Klonopin: June 2014- Sept 2015; 1mg tapered over 6 mths, dc'd at 0.25mg, withdrawal hellish (perhaps because of concurrent dc of gabapentin)

Mirtazepine: Jumped off at 2.4 mg. (stable in 8 months).

Seroquel:  June 14 - July 24, 2016, 25 mg alternate nights; smaller doses for shorter periods. Total use about 3 months 

Lamictal: March 19, 2018 - 1 mg; March 23 - 1.25 mg; April 6 - 2mg. Discontinued at 2 mgJuly 1, 2018 due to Steven Johnson Syndrome.

 

CURRENT

Supplements: Vit D, turmeric

Naturethroid: 65 mcg for hypothyroidism

Trazodone: Oct 2015 - June 2016; 75 mg tapered over 2 mths, intense w/d after 3 weeks. Reinstatement: 07/25/16 - 25 mg; updosed 08/03/16 - 50 mg;  10/01/16-  62mg; 03/24/17 dropped to 50 mg (stable in 2.5 months)

                           Current psych meds: Trazodone 50 mg

Link to comment

Hi Survivor. I posted on my thread to you. Sometimes it takes a hold longer than 3 months to feel improvements. I know that traz gives me twitches sometimes and I've read seroquel could also. Try to ask others that have taken seroquel to see what their experience is. Hang in there.

 

Marie

10/13--10/14 Ambien. Started tapering 1/14  Jumped 10/14.  Done.                                                                              

3/14        7.5 Remeron  still taking this.                              

2/14         75 Trazodone   -    Tapered by dry cutting all the way down.

1/16        4 mg Trazodone  -  Jumped. Bad mistake. Got hit with late withdrawal 6 weeks later. Reinstated.

4/16        Reinstated 1 mg, updose to 2 mg Trazodone

2/19        .04 Trazodone. Walked off.  Done.

10/3/19  Started 7.5 Mirtazapine taper cut to .073 gram weight, pill weighs .076

4/5/20    New Mirtazapine Taper - Compound Liquid 7.35 mg April '20, 7.25 mg May, 7.05 mg June, 6.99 mg June, 6.78 mg July, 6.57 mg Aug, Sept 6.35 mg, Sept 6.24 mg, Sept 6.21 mg, Oct 5.99 mg, Oct 5.90 mg, Oct 5.70 mg.

1/11/21 6.05 mg Messed up taper due to syringe change. Must remember the 1 ml syringe contains 1.5mg! 1/16/21 5.99 mg

2/21 5.75 mg, 3/21 5.6 mg, 4/7 5.45, 4/14 5.30, 5/12 5.15, 5/25/21 4.99 mg, 6/29 4.87 mg, 7/14/21 4.74 mg, 8/5 4.62 mg 8/17 4.5 mg, 8/30 4.38 mg,9/16 4.26 mg,10/9 4.14 mg, 10/23 4.05 mg, 11/6 3.96 mg,11/17 3.87mg.***Jan 22 Liquid was changed/couldn't tolerate***Changed back to pills. Feb 22/3.9 mg, 2/17/22 3.8 mg, 3/23 3.7 mg, 4/7 3.6 mg, 5/10 3.5mg,6/10/22 3.4 mg, 7/4 3.3 mg, 7/25 3.2 mg, 8/20/22 3.1 mg, 9/15 3 mg, 10/8/22 2.9 mg., 12/15 2.8 mg, 1/6/23 2.7 mg, 2/16/23 2.6 mg, 3/9 2.5 mg, 4/4 2.4 mg, 4/29/23 2.3 mg, 5/26 2.2 mg, 6/22/23 2.1 mg, 10/14 2 mg, 11/12 1.9 mg, 11/28 1.8 mg , 12/14/23 1.7, 12/31/23 1.6 mg, 1/20 1.5 mg, 2/6/24 1.4 mg, 2/12 updose 1.5 mg, 3/27/24 1.4 mg. Taking multi-vitamin, vit. D, cholestoff, psyllium husk, and fish oil.

 

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So, this is a post that I was dreading making.  Things are not well.

 

Over the past few weeks, sleep has deteriorated to about 4 hours a night, filled with scary nightmares.  Last night I woke up once, literally shaking from the frightening nature of the dreams. 

 

I don't think this is a wave.  The sleep issue is in part due to the alerting sensations I get while trying to rest.  These sensations are interesting in that they feel like an instantaneous flood of awareness that usually result in a jolt/jerk, but not always.  This is in addition to the normal jerks from wd that are not related to this "flood".  

 

The alerting jerks alarm me; they always result in anxiety spikes and HR increases.  But more importantly, they feel as if my body is rejecting the sleep meds, and does not want to fall asleep.  This has not improved, but over the past months have become worse (I think I may have plateaued now, though).  

 

I think, too, that trazodone has run out of puff since sleep onset is about 2 hrs long!

 

On top of that, depression is back.  I have not had a bout since last November!  It may be situational however, as I can't see myself out of this mess anytime soon, I need to be a functional mother to my kids, etc.  With proper tapering, it could take me about 6 years to get off safely from all the drugs; this in itself I could come to terms with if I were stabilized, but I cannot seem to that point. (I have other sxs such as shakiness, etc. that I will not harp on for now.)

 

I am left with some difficult choices:

 

1) Keep holding in the hopes that the alerting diminishes with time.  However, It has been 3 months of holding and I should at least see some improvement in the jerks, but none so far.  At what point does one say holding is not improving the situation?

2) Experiment with moving seroquel to mornings instead of nights, to see if the alerting sensations decrease.  I assume sleep with be even worse, although I don't know if seroquel is sedating at that dose.  I currently take trazodone and seroquel at 9:30pm, and mirtazepine at 7pm

3) Start tapering.  I view this option with a lot of trepidation since I am not stable.  If my current situation is my baseline, I am will be in tapering hell throughout.  But I feel this is the only one to eventually get me off the drugs, and things could even improve during the taper?

4) Other ??

 

I am trying desperately to hold it together, but I feel crushed.

 

Appreciate all the help!

PAST

Gabapentin:  about 6 months in 2015, 300-900 mg, cold turkeyed Sept 2015 (at same time dc'd Klonopin)

Klonopin: June 2014- Sept 2015; 1mg tapered over 6 mths, dc'd at 0.25mg, withdrawal hellish (perhaps because of concurrent dc of gabapentin)

Mirtazepine: Jumped off at 2.4 mg. (stable in 8 months).

Seroquel:  June 14 - July 24, 2016, 25 mg alternate nights; smaller doses for shorter periods. Total use about 3 months 

Lamictal: March 19, 2018 - 1 mg; March 23 - 1.25 mg; April 6 - 2mg. Discontinued at 2 mgJuly 1, 2018 due to Steven Johnson Syndrome.

 

CURRENT

Supplements: Vit D, turmeric

Naturethroid: 65 mcg for hypothyroidism

Trazodone: Oct 2015 - June 2016; 75 mg tapered over 2 mths, intense w/d after 3 weeks. Reinstatement: 07/25/16 - 25 mg; updosed 08/03/16 - 50 mg;  10/01/16-  62mg; 03/24/17 dropped to 50 mg (stable in 2.5 months)

                           Current psych meds: Trazodone 50 mg

Link to comment

S. I'm so sorry that you're going through this . What symptom do you feel is the hardest to deal with ?  I ask this only because I also dealt with severe sleep problems for two years. I understand how debilitating it can be but with time it's surmountable.

 

Or is it mainly the jerks or the depression ? What is the worst symptom ?

 

If you could keep notes of symptoms over the next few days it would help to decipher the problem. Let's go from there with a little more information and then reassess.

 

PS. Are they " jerks" or just " cortisol rushes" ?  There is a difference.  Maybe if you could explain your symptoms a little more , it would help to ascertain the variance. Just trying to get a good and accurate overview here. 

Many SSRI's and SSNRI's over 20 years. Zoloft for 7 years followed by Effexor, Lexapro, Prozac, Cymbalta, Celexa, Pristiq, Valdoxan, Mianserin and more - on and off. No tapering. Cold turkey off Valdoxan - end of May 2014

 

                                                  Psych Drug - free since May 2014
.
         

Link to comment

Hi AliG,

 

Thank you for you support.  You have no idea how much I need it today, am tearing up as I write this (haven't done this in 4 months).

 

First of all, I should say one of my most debilitating sxs - anxiety has become very manageable.  I only get occasional spikes, but I am able to weather it.  Never thought that would happen, but it did.  Thank the Maker!

 

My most difficult sx is the jerking, only because it contributes to my sleep issues and it is a little frightening when it happens.  I should mention that the reason I got on psych meds (klonopin) to begin with was having unexplained hypnic jerks when I went off to sleep.  (I had an MRI, came back normal.)  But the jerking prevented me from sleeping then too.  I was given the option of Lamictal or Klonopin, and we decided the latter.  Part of the depression I am feeling is wondering if this condition has returned and not knowing how to resolve that, if so.  My neurologist has suggested I see a movement specialist, given my history.  I am on a waiting list to see one.

 

For now the depression is manageable, but I can see it spiraling if I can't get to the bottom of this jerking/lack of sleep.  I worry too that I have reached tolerance with the meds; they worked well for a few months, were able to mask the jerking, but no longer.

 

To be more specific about the jerks, there are two kinds: the ones you get where limbs fly out, head lifts off pillow, jaw moves.  The other type is hard to describe.  It really feels like I have been flooded with "awareness" in an instant.  Sometimes it is dramatic with anxiety spikes and HR increases but other times it feels benign. I lie resting and I become suddenly aware and bright-eyed and sleep is lost.

 

This morning, around 10 am, I tried to snooze after kids went off to school, and there it was again.  I felt zoned out, and there it was, an almost gentle awakening that rendered me bright-eyed.  

 

My days are usually uneventful sxs-wize since the anxiety became manageable.  I am going to do another post with the last few days of sxs to prevent this one being too long.

PAST

Gabapentin:  about 6 months in 2015, 300-900 mg, cold turkeyed Sept 2015 (at same time dc'd Klonopin)

Klonopin: June 2014- Sept 2015; 1mg tapered over 6 mths, dc'd at 0.25mg, withdrawal hellish (perhaps because of concurrent dc of gabapentin)

Mirtazepine: Jumped off at 2.4 mg. (stable in 8 months).

Seroquel:  June 14 - July 24, 2016, 25 mg alternate nights; smaller doses for shorter periods. Total use about 3 months 

Lamictal: March 19, 2018 - 1 mg; March 23 - 1.25 mg; April 6 - 2mg. Discontinued at 2 mgJuly 1, 2018 due to Steven Johnson Syndrome.

 

CURRENT

Supplements: Vit D, turmeric

Naturethroid: 65 mcg for hypothyroidism

Trazodone: Oct 2015 - June 2016; 75 mg tapered over 2 mths, intense w/d after 3 weeks. Reinstatement: 07/25/16 - 25 mg; updosed 08/03/16 - 50 mg;  10/01/16-  62mg; 03/24/17 dropped to 50 mg (stable in 2.5 months)

                           Current psych meds: Trazodone 50 mg

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The other type is hard to describe.  It really feels like I have been flooded with "awareness" in an instant.  Sometimes it is dramatic with anxiety spikes and HR increases but other times it feels benign. I lie resting and I become suddenly aware and bright-eyed and sleep is lost.

 

I still get that even now. It's a drug thing. Nothing really to worry about. Usually , it's cortisol.

 

My most difficult sx is the jerking, only because it contributes to my sleep issues and it is a little frightening when it happens.  I should mention that the reason I got on psych meds (klonopin) to begin with was having unexplained hypnic jerks when I went off to sleep.  (I had an MRI, came back normal.)  But the jerking prevented me from sleeping then too. 

 

That's interesting and also a new fact that we didn't know until now.

 

None of this sounds unusual. Awaiting your update.

Many SSRI's and SSNRI's over 20 years. Zoloft for 7 years followed by Effexor, Lexapro, Prozac, Cymbalta, Celexa, Pristiq, Valdoxan, Mianserin and more - on and off. No tapering. Cold turkey off Valdoxan - end of May 2014

 

                                                  Psych Drug - free since May 2014
.
         

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Wow, Ali, thanks for the fast response!

 

Here's a run-down of the last few days:

 

02/25: 

6am: woke up.  Had 2 strong head twists, 1 hand jerk, faint fasciculations 1/10, faint anx 1/10.  Slept 5 hrs

Morn/Afternoon:  Anx 3/10, left knee pain, neuropathy in l. foot, some fasic 1/10

Evening: anx 1/10, strong ear myoclonus episodes 4/10.

7pm and 9:30: Meds.  Long sleep onset, maybe 1.5 hrs. Lots of alerting sensations. 

 

02/26:

2:30 am:  woke up.  Strong jerks in trunk, hands. High anx 4/10, HR thumping. Slept less than 4 hrs

Morn: anx 5/10, HR 80's at rest, some ear myoclonus

Noon: anx down 1/10, HR normal

3 pm: tried to nap, had zero jerks! but a few fasciculations

Evening:  Sharp neuropathy in l. foot

7pm and 9:30: Meds.  short sleep onset, no alerting or twitches!

 

02/27: 

6 am: woke up. 2 faint jerks, a few mild fasciculations, 0 anx. 7 hours sleep (heaven!)

All day: short faint episodes of fasciculations, 1/10 anx

Evening: neuropathy in l foot, becoming shaky.  Overall, a good day (see what good sleep can do!)

7pm and 9:30: Meds.  Long sleep onset, lots of alerting and body jerks

 

02/28:

4am: woke up. Jerks in trunk, head, lower jaw. High anxiety. HR thumping, sweating.  At most 4 hrs sleep

morn: anx 2/10, shaky 4/10, many fasciculations 

afternoon/evening: all sxs diminished.  Feel decent

7pm and 9:30: Meds.  Long sleep onset, lots of alerting but faint jerking.

 

03/01:

5 am.  Woke up.  Jerks in both feet. 4 hrs sleep with horrible nightmares

morn: anx 2/10, very shaky 6/10, legs weak 3/10

afternoon: shakiness continues, left knee pain, feeling despondent

evening: mood better, many strong episodes of ear myoclonus

7pm and 9:30: Meds.  Long sleep onset, lots of alerting and jerking.

 

So you can see, the movement issues are the biggest.  I'm getting disheartened over the deterioration of my sleep.  In fact, I was sleeping better in Jan/Feb than I have been these past 10 days.  Tapering seems to be in a distant future ...

 

Thanks again, AliG.

 

 

 

 

PAST

Gabapentin:  about 6 months in 2015, 300-900 mg, cold turkeyed Sept 2015 (at same time dc'd Klonopin)

Klonopin: June 2014- Sept 2015; 1mg tapered over 6 mths, dc'd at 0.25mg, withdrawal hellish (perhaps because of concurrent dc of gabapentin)

Mirtazepine: Jumped off at 2.4 mg. (stable in 8 months).

Seroquel:  June 14 - July 24, 2016, 25 mg alternate nights; smaller doses for shorter periods. Total use about 3 months 

Lamictal: March 19, 2018 - 1 mg; March 23 - 1.25 mg; April 6 - 2mg. Discontinued at 2 mgJuly 1, 2018 due to Steven Johnson Syndrome.

 

CURRENT

Supplements: Vit D, turmeric

Naturethroid: 65 mcg for hypothyroidism

Trazodone: Oct 2015 - June 2016; 75 mg tapered over 2 mths, intense w/d after 3 weeks. Reinstatement: 07/25/16 - 25 mg; updosed 08/03/16 - 50 mg;  10/01/16-  62mg; 03/24/17 dropped to 50 mg (stable in 2.5 months)

                           Current psych meds: Trazodone 50 mg

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  • Administrator

Of all your drugs, it is Seroquel that is associated with movement disorders.

 

As you were taking Seroquel when you went off trazodone last summer, it's very possible the upset to your nervous system made it vulnerable to this adverse effect of Seroquel.

 

Taking 3 drugs at once for sleep doesn't make you sleep better, it can cause a paradoxical reaction. 

 

There's also the interaction between mirtazapine and trazodone, which potentially can be stimulating. 

 

It's also highly possible your "depression" is a side effect of your drug cocktail.

 

You will need to figure out how to unwind it. Since you've already experienced withdrawal syndrome from going off Seroquel, if I were you, I'd go off it cautiously, as a movement disorder from it is no joke

 

There is no way we can predict what will happen if you do this, we cannot guarantee your sleep will be preserved.

This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner.

"It has become appallingly obvious that our technology has surpassed our humanity." -- Albert Einstein

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