Jump to content

Jen1234: insomnia due to Amitriptyline withdrawal?


Jen1234

Recommended Posts

Posted

Hi Everyone,

 

I'm suffering from some pretty severe insomnia and wondering if it might be withdrawal from Amitriptyline?

 

I started Zoloft back in early September due to some mild post-partum anxiety. During that week I experienced three nights in which I woke at 3 and could not fall back asleep. On the second night I got extremely anxious, but managed after several hours to fall back to sleep even though my anxiety was very high. I was a great sleeper so nothing like this had ever happened to me before.  Looking back, I realize it was probably a side effect of the Zoloft that I had just started that week, but unfortunately I didn't know that at the time. On the third night when I realized I couldn't fall back to sleep again, the anxiety increased to multiple panic attacks that day. When I tried to sleep, I was very anxious and this resulted in an over awareness of myself falling asleep, where I would unconsciously "catch" myself falling asleep, resulting in a huge surge of adrenaline/anxiety. This would happen over and over again. I spent the next three weeks with high anxiety and multiple panic attacks a day. During this time I tried Ambien, Ativan at .5-1mg, but could only sleep a few hours a night due to the anxiety. 

 

Towards the end of September I was prescribed 25mg of amitriptyline. On the first night I took it, I woke up for the first time without any anxiety. Typically I had been waking with a racing heart/anxiety. Given that I had no anxiety I fell back to sleep easily. On the second night, this did not happen and I did not sleep. On the third night, when my body would "catch" itself upon falling asleep I decided to just breathe through it, tell myself it was ok, and eventually I fell asleep. I used this as a positive thought for myself, telling myself that even if my body catches itself multiple times I will eventually fall asleep. My anxiety significantly decreased after that night. I slept well thereafter, but continued to take the amitriptyline and .5-1.5 mg of Ativan as a safety blanket. I weaned off the Ativan after several more weeks and stayed on the Amitriptyline at 25mg until Oct 11th when it was decreased to 10mg and Lexapro was introduced. I noticed several weeks after the drop in Ami and the increase in Lexapro that I was not sleeping as well. The first half of the night was fine, and then the second half of the night I would go in and out of sleep all night. Then Amitriptyline was discontinued at the end of November, (10mg to 0mg). Lexapro was at 20mg now. I found myself taking hours to fall asleep and when I did fall asleep the sleep was shallow, and I woke 20+times a night. My first thought was that it was the Lexapro causing my insomnia so I tapered off the lexapro within a week. Several weeks later and it seemed my sleep was just getting worse as I was now going entire days without sleep. At this point I was not anxious because I figured I just needed to give more time for the Lexapro to leave my system. Then in another few weeks I tried to reinstate the Amitripyline in mid Dec for 5 days at 25mg. I found that it helped me to sleep the first night, but then it had no impact anymore so I came off. I reinstated again mid January for 9 days at 12.5mg, thinking perhaps I needed to give it more time. I wasn't comfortable, however, going back up to 25mg. Again, it helped the first night, but not the other nights. I haven't taken any amitriptyline since Jan 23rd and I am still averaging 0-5 hours of sleep. It barely feels like sleep. Sometimes I don't even know if I'm sleeping at all. It is shallow, with lots of dreams, lucid dreaming, and frequent wake-ups. I am of course very anxious at this point so I am sure the anxiety is not helping it now. 

 

So in all, I was only on Amitriptyline for about 2.5 months. Aside from the several attempts at reinstating, I have mostly been off of it for 4 months. Is it possible that the insomnia I'm experiencing is withdrawal from the Ami? Even at my calmest I am still not able to fall asleep, and the sleep I get just feels so unnatural. Sleep 15 min awake 5 sleep 15 awake 5 repeat, or if I have a longer stretch it often doesn't feel like I slept. I'm receiving CBT-Insomnia therapy right now, so I know all about sleep hygiene and I'm very familiar with supplements marketed for sleep, but nothing seems to be helping at the moment. The occasional Ativan doesn't even do anything and I wonder if CBT-I even can if this is withdrawal. I'm so tired of living my days in constant fear and panic that I'll never sleep normally again. 

 

Thanks for any insight/opinions/suggestions. 

  • ChessieCat changed the title to Jen1234: insomnia due to Amitriptyline withdrawal?
  • Moderator Emeritus
Posted

Hello Jen1234,

Please know that I'm reading over your story in detail so that I (and other members and moderators here on the SA site) can respond carefully.  Don't be worried or discouraged that you haven't gotten a reply yet, okay?  I'll be posting one here shortly.

Warmest,
Wiggle  

*I'm not a doctor and don't give medical advice, just 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
-7 years off: Huge improvements, incl. improved dystonia

Posted

Thank you Wiggle. Your time and kindness are very much appreciated 

  • Moderator Emeritus
Posted (edited)

Dear Jen1234,

Thanks for not minding that it took me some time to carefully read your story and respond.

There is a detail that I'm still unclear on, so I do have a question for you: Are you still on Zoloft?  I know that Ambien and Ativan were added while you were on Zoloft, but I don't recall seeing in your story whether you ever came off Zoloft.

You stated in your story that you've been mostly off amitriptyline for 4 months.  These meds are not always that straightforward, though.  It's not as simple as counting up the time we've been off the meds versus the time we've been on the meds and doing a straight-up comparison.  With each reinstatement, it's a whole new round of being on the meds.  If your last dosage of amitriptyline was on January 23, 2019, then you've technically been off of it for less than 2 months.  Does that make sense?  While you were not on the meds for very long when we add up all the calendar days, you did go on and off of them a lot, and that throws a wrench in things.  Most of us on SA have been through the on-and-off cycle, so don't let that worry you.  Just know not to do it again in the future, as it risks oversensitizing the nervous system.  We can't change what we've done with meds in the past, but we can be safer about it starting now :)

To answer your question, yes this insomnia can be amitriptyline withdrawal (WD), and it can also be a reaction to all the stops and starts of ami, plus all the starts and stops of the other meds you described.  At this point, it's likely a convergence of everything... not to mention you already had some mild post-partum anxiety and insomnia.  What was originally there has been exacerbated.

I'm concerned about the about the occasional Ativan that you said doesn't do anything to help you sleep.  It may not be putting you to sleep, but I'm worried that it might sensitizing your nervous system and actually adding to your sleep problems.  However, I don't recommend that you stop anything cold turkey, nor that you rapidly taper off of anything else.  For now, I have this additional question: How often are you taking the occasional Ativan and at what dose?

 

While I can't tell you what post-partum anxiety/insomnia recovery look like, I can tell you that WD-induced anxiety/insomnia do recover.  I've been through it personally—as have others here—and I can happily tell you that I now sleep like a tank.

Yes, CBT techniques for insomnia do help during WD, and we even have links here on SA addressing some of the techniques you already mentioned, like sleep hygiene.

 

Recovering from adverse reactions to these meds and from WD doesn't follow a straight line. It's more like two steps forward and one step back, but the overall pattern is forward progress.

I think a good place for us to recap now is as follows:

1.) Please let us know if you are still on Zoloft.

2.) Let us know how often and what dosage you are taking the occasional Ativan.

3.) Fill out your concise medication signature on SA.  That way, we have your detailed story that you gave in your intro thread, plus a concise list for quick reference.  Here's how to fill out your medication signature:

a.) Look at the top right of the page where your name appears

b.) Click on your name and you'll see a pull-down menu appear

c.) Under that menu, click on Account Settings          
d.) You'll get taken to a new page.  Look at the left side of that page
e.) Click on Signature
f.) Fill out a short list of your medication history and dates you took the meds in the box that pops up.  (For example, you can just write Sertraline 60 mgs from July 2016 to Sept 2018.)  
g.) Click Save and then you can go back to the rest of the site and keep chatting!

4.) Please read the link below about the "windows and waves" pattern of recovery:
https://www.survivingantidepressants.org/topic/82-the-windows-and-waves-pattern-of-stabilization/

5.) Please read the link about coping with insomnia during WD.  It may be repetitive of what you already know from your CBT therapy, but it will reassure you that people on SA have been through insomnia and recovered from it!  
https://www.survivingantidepressants.org/topic/53-tips-to-help-sleep-so-many-of-us-have-that-awful-withdrawal-insomnia/

6.) Check out the Success Stories on SA :)
https://www.survivingantidepressants.org/forum/28-success-stories-recovery-from-withdrawal/

I've given you a lot of info, so please don't hesitate to post responses and follow up questions.  There will be additional mods and members who weigh in on your thread, too!

Edited by WiggleIt
Added a missing space btwn words and fixed a comma typo

*I'm not a doctor and don't give medical advice, just 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
-7 years off: Huge improvements, incl. improved dystonia

  • Moderator Emeritus
Posted

Oh, and I forgot to tell you that I'm TOTALLY recovered from that "catching" thing, and also from those incredibly lucid dreams.  I used to refer to the "catching" as "clicking awake."  

*I'm not a doctor and don't give medical advice, just 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
-7 years off: Huge improvements, incl. improved dystonia

  • Moderator Emeritus
Posted

Hi Jen, 

 

I wanted to welcome you to SA as well. I’m really sorry that your insomnia is so bad. Yes, going on and off meds can certainly trigger insomnia. I’m tapering off Seroquel, I’ve been doing so for many years, and I remember one night when I didn’t take it I didn’t sleep at all. It causes rebound insomnia. 

 

Insomnia is a really common symptom in withdrawals. If you read about people going through insomnia on here you will see that it eventually gets better and better. It takes a long time sometimes though. These medications really play havoc on our brains. 

 

Wishing you all the best in your recovery💚

Seroquel. 2019:➡️ From 7.25mg to 5.80mg. 2020➡️5.60 to 4.80. 2021➡️4.60 to 4.0.  2022➡️3.95 to 3.55. 2023➡️ From 3.50 to 3.25.  2024➡️Jan15=3.20✔️ Feb19=3.15✔️ March26=3.10✔️May1=3.0✔️ June7=3mg✔️ July 15= 2.95✔️  Aug14=2.90✔️ Sep13=2.85✔️ Oct12= 2.80✔️ Nov9=2.75✔️This is NOT medical advice.Consult your doctor.

  • Administrator
Posted

Welcome, Jen.

 

It looks to me like you consistently had an adverse reaction, sleeplessness, to the SSRIs, Zoloft and Lexapro.

 

Sleeplessness is a common side effect of SSRIs and SNRIs, but doctors are poorly informed about this and instead of discontinuing the drugs, increase the dosage or add a benzo to compensate.

 

Going on and off psychiatric drugs and having adverse reactions can make your nervous system hypersensitive to drugs and sometimes supplements and even foods. You may get outsized adverse reactions to "normal" doses. If I were you, I would never take an SSRI or SNRI again.

 

On 2/27/2019 at 12:47 PM, Jen1234 said:

Then in another few weeks I tried to reinstate the Amitripyline in mid Dec for 5 days at 25mg. I found that it helped me to sleep the first night, but then it had no impact anymore so I came off. I reinstated again mid January for 9 days at 12.5mg, thinking perhaps I needed to give it more time. I wasn't comfortable, however, going back up to 25mg. Again, it helped the first night, but not the other nights. I haven't taken any amitriptyline since Jan 23rd and I am still averaging 0-5 hours of sleep. It barely feels like sleep.

 

Are you also getting up frequently to feed the baby?

 

If you are falling asleep naturally, this isn't too bad for withdrawal syndrome. You can do these things to improve your sleep:

 

Tips to help sleep -- so many of us have that awful withdrawal insomnia

 

Melatonin for sleep: Many people find it helpful

 

TV or computer use in evening can disrupt sleep: Bright light signals the brain that it's daytime


Music for self-care: Calms hyperalertness, anxiety, aids relaxation and sleep

 

A lot of people find fish oil and magnesium supplements helpful, see
http://survivingantidepressants.org/index.php?/topic/36-king-of-supplements-omega-3-fatty-acids-fish-oil/
http://survivingantidepressants.org/topic/15483-magnesium-natures-calcium-channel-blocker/

 

Try a little bit of one at a time to see how it affects you.

 

Please let us know how you are doing. It would be best for you to recover your sleep naturally, but if that doesn't work, possibly 5mg-10mg amitriptyline may help -- but you'd have to taper off it later.

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.

Posted

Hi Everyone,

 

Thank you so much for your thorough responses. I updated my signature. To answer your questions 

 

1. I am not on Zoloft. I stopped taking it when I realized it was likely the initial cause of my insomnia back in early September. I slept fine even with the mild postpartum anxiety right up until I began Zoloft.

2. I have not taken Ativan since Jan 23rd accept for once last week (1mg) because of a panic attack (due to not sleeping). Prior to this I was taking Ativan about 1 mg during the month of September and until Mid October. Thereafter I began taking it again about twice weekly at 1-1.5mg usually at night starting in November.

3. I am not getting up to feed the baby. She’s been sleeping 12 hours since 9 weeks. How ironic 

 

Thank you so much for the links. It helps to understand how I might observe any progress. 

 

I am taking magnesium, a pre-natal multi, and B complex. I will try the fish oil as well. 

 

A few questions 

 

1. Any ideas why reinistating at 10mg the first time and later at 25mg (my original dose) only had a positive effect on my sleep the first night, but not thereafter? I would have expected that reinistating would have mitigated my sleeping issues if this were withdrawal.

 

2. Because I reinstated, does this mean those months prior were kind of a waste in  regards to my recovery? Is it like I’m starting all over again each time I reinstate even though each reinistatement was quite short?

 

3. Wiggles, I know everyone’s recovery time varies, but if you don’t mind me asking, how long until you noticed some progress in your sleep patterns? What did the progress look like for you and when did you find that you began sleeping like you used to again. Thank you for sharing that your sleep has recovered it gives me hope and I have little of it at this time. 

 

4. Is there a possibility that my sleep will never return if this is withdrawal? I have seen some mention that years and years down the line they still can not sleep and that terrifies me. Have you noticed through this forum that most people DO recover their sleep? 

 

THANK YOU!!!

  • Moderator Emeritus
Posted (edited)
2 hours ago, Jen1234 said:

Wiggles, I know everyone’s recovery time varies, but if you don’t mind me asking, how long until you noticed some progress in your sleep patterns?


Gosh, I think progress took maybe a year for me, but I was just reading another SA member's recovery story where they said their insomnia completely recovered in just 5 months.  For me, I had progress, then setbacks, then progress.  Now, I sleep like a log and dream like normal.  I'd have to read back through my symptom diaries from years ago to remember what my exact timelines were for steps forward and for total improvement.

 

2 hours ago, Jen1234 said:

Is there a possibility that my sleep will never return if this is withdrawal?


Actually, with WD, then there is every possibility that your sleep WILL recover :)

  

Edited by WiggleIt
added italics

*I'm not a doctor and don't give medical advice, just 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
-7 years off: Huge improvements, incl. improved dystonia

  • Moderator Emeritus
Posted
2 hours ago, Jen1234 said:

Have you noticed through this forum that most people DO recover their sleep? 


From what I've seen, yes.

*I'm not a doctor and don't give medical advice, just 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
-7 years off: Huge improvements, incl. improved dystonia

  • Moderator Emeritus
Posted

Hi Jen, 

 

I just noticed that you’re taking a vitamin B supplement. It’s not a good idea to take vitamin B when going through withdrawals as it can be very activating in a lot of people. Also, there may be some things in your multi vitamin that may be affecting you too. 

 

The only two supplements recommended on SA are magnesium and fish oil, as you probably know. I tried magnesium once but it didn’t like me, it really ramped up my symptoms. I might try a different kind one day, or maybe not. I see you’re on it, it really does help a lot of people when going through withdrawals. I hope the fish oil helps when you start taking it, remember to start with low doses and work your way up.

 

Sending hugs🤗

Seroquel. 2019:➡️ From 7.25mg to 5.80mg. 2020➡️5.60 to 4.80. 2021➡️4.60 to 4.0.  2022➡️3.95 to 3.55. 2023➡️ From 3.50 to 3.25.  2024➡️Jan15=3.20✔️ Feb19=3.15✔️ March26=3.10✔️May1=3.0✔️ June7=3mg✔️ July 15= 2.95✔️  Aug14=2.90✔️ Sep13=2.85✔️ Oct12= 2.80✔️ Nov9=2.75✔️This is NOT medical advice.Consult your doctor.

Posted

Thanks Carmine, I had read B vitamins were beneficial for sleep, but perhaps I should reconsider. I’ve added the fish oil. Thanks for the recommendation 

Posted

@Carmie and wishing you the best of luck with your seroquel tapering ❤️

  • Moderator Emeritus
Posted

Hi Jen, 

 

Thanks for your kind words. I just did another taper yesterday, another small step forward. Yay! 

 

Glad to hear you’ve added some fish oil, I hope it helps a little. I haven’t used it as yet myself. I tried magnesium once, but it didn’t agree with me, it really ramped up my symptoms. I’m still wondering whether to try a different kind, maybe not. My system is so sensitised to things as I’ve been on and off a million things. 

 

Take care💚

Seroquel. 2019:➡️ From 7.25mg to 5.80mg. 2020➡️5.60 to 4.80. 2021➡️4.60 to 4.0.  2022➡️3.95 to 3.55. 2023➡️ From 3.50 to 3.25.  2024➡️Jan15=3.20✔️ Feb19=3.15✔️ March26=3.10✔️May1=3.0✔️ June7=3mg✔️ July 15= 2.95✔️  Aug14=2.90✔️ Sep13=2.85✔️ Oct12= 2.80✔️ Nov9=2.75✔️This is NOT medical advice.Consult your doctor.

Posted

That’s great! How are you feeling today?? I had a small victory as well. I have been for the most part consistently falling asleep mich faster than usual and I got two decent nights back to back which has happened in 4.5 months. 7 broken hours the other night and 6 broken hours last night so i’m very pleased with that. I’ve also noticed i’m starting to get that sleepy feeling back at times. Gives me some hope to see some small changes. 

  • Moderator Emeritus
Posted

That’s great Jen, 

 

Yay for small wins! I’m always looking for the positive in things. So far I haven’t noticed any symptoms ramping up since the drop, Thanks for asking. I dropped by just over 3%. There’s nothing linear at all about withdrawals, but a lot of the time I find that my symptoms ramp up around day five or so after a taper. I’m not sure if they will or not this time, I just take a day at a time and try and focus on the happy things in my day. That’s not to say I haven’t shed tears, I think we all have, and I’m sure I’ll shed more. 

 

Here’s to continually celebrating the small victories 💚

 

 

Seroquel. 2019:➡️ From 7.25mg to 5.80mg. 2020➡️5.60 to 4.80. 2021➡️4.60 to 4.0.  2022➡️3.95 to 3.55. 2023➡️ From 3.50 to 3.25.  2024➡️Jan15=3.20✔️ Feb19=3.15✔️ March26=3.10✔️May1=3.0✔️ June7=3mg✔️ July 15= 2.95✔️  Aug14=2.90✔️ Sep13=2.85✔️ Oct12= 2.80✔️ Nov9=2.75✔️This is NOT medical advice.Consult your doctor.

Posted

So glad to hear that @Jen1234!

May 2018:  1 dropper liquid marajuana

june 2018. Trazadone ambien 10 mg

july 2018 seroquel 37 mg ambien 2.5mg lex 5

October 2018 taper seroquel added hydroxizine 25 mg

nov ambien taper lex taper 

dec 2018 off of lex off of phenibut

 

October 2018- added a lot of supplements.  night: 3mg melatonin Passion flower tincture valerian tincture lavender magnesium glycinate liquid gaba herbal blend Theanine 450 mg tryptophan 1.5 grams 

May 2019. Down to the following at night 

4-6 mg hydroxizine. 250 mg tryptophan (1/2 pill).75 mg melatonin pill .75 herbal blend pill magnesium citrate 

Feb 2020:Off all supplements and pills.

Posted

Hi,

 

I’m looking for advice. I am not dealing well with the lack of sleep and the anxiety about it is really impacting my life in so many areas. My quality of life is barely there. Whereas I used to be ale to remain calm for some time in bed, I am now finding that increasingly difficult to do. The anxiety is so out of control that I am losing sleep due to the withdrawal and now due to the anxiety. Double whammy. I do not want to go back on a sedating antidepressant as I don’t want to have to deal with the rebound insomnia coming off of it, but I am thinking about trying a different anti-depressant to combat this overwhelming anxiety as the anxiety is not helping the insomnia. I am receiving other supports such as CBT-I but I am still finding no relief, and the fact that the anxiety is becoming more intense and constant is scary. 

 

If if I tried an anti-depressant am i risking delaying the healing of my insomnia due to the amitriptyline withdrawal? Thoughts/suggestions? Thank you

Posted

Not a mod but my two cents is that antidepressants are unpredictable in terms of what they do to sleep.    I had worse insomnia tapering lexepro than seroquel.   

 

Have you tried magnesium?  

May 2018:  1 dropper liquid marajuana

june 2018. Trazadone ambien 10 mg

july 2018 seroquel 37 mg ambien 2.5mg lex 5

October 2018 taper seroquel added hydroxizine 25 mg

nov ambien taper lex taper 

dec 2018 off of lex off of phenibut

 

October 2018- added a lot of supplements.  night: 3mg melatonin Passion flower tincture valerian tincture lavender magnesium glycinate liquid gaba herbal blend Theanine 450 mg tryptophan 1.5 grams 

May 2019. Down to the following at night 

4-6 mg hydroxizine. 250 mg tryptophan (1/2 pill).75 mg melatonin pill .75 herbal blend pill magnesium citrate 

Feb 2020:Off all supplements and pills.

  • 1 month later...
Posted

Given that I was on Ativan for 5 weeks is it possible my insomnia is  due to the use of Ativan? The Ativan and amitriptyline overlapped for about 2 weeks. The insomnia came about 2.5 weeks after my last dose of Ativan which was also about the same time I dropped my amitriptyline from 25mg to 10mg. Would I have other symptoms though if this were from Ativan withdrawal or is it possible that insomnia might be my only symptom. I am beyond anxious as well, but the anxiety seems to all stem from my worries about the insomnia. I guess in the end it doesn’t matter which drug caused it though... 

  • 4 weeks later...
Posted

Hi,

 

I have taken klonopin for 7 weeks twice a week either .5 or 1mg as I have complete insomnia (1-2hrs a night for 8 months now)  I haven’t taken it for 9 days and have flu like systems and an upset stomach. My daughter was sick last week so I could have what she has. My question is, should I be concerned of withdrawal symptoms from klonopin even though I wasn’t taking it everyday and for only a month and a half? If these symptoms continue what is the best plan of action? Thank you

  • Moderator Emeritus
Posted

It's hard to say if you're getting withdrawal from the Klonopin or if it's the flu. It is possible to become dependent on a benzo, even when it's taken periodically.

 

Klonopin has a half-life of 18 - 50 hours, so if you're metabolizing it at the 50 hour rate, you would still have 25% of it in your system 4 days later and 13% in your system 6 days later.

 

If you're somewhere in between the 18 - 50 hour rate of say, 35 hours, you would still have 25% of it in your system 3 days days later and 13% in your system 4 days later. 

 

You can figure this out using a half-life calculator:

 

Drug Half-Life Calculator

 

You also may be more susceptible to benzo withdrawal from periodic use due to kindling. Kindling means that each subsequent taper has worse withdrawal symptoms than the previous one due to the trauma done to the GABA system and the overall nervous system. 

 

Kindling (sedative–hypnotic withdrawal)

 

What is the kindling phenomenon that occurs with benzodiazepines?

 

So it's entirely possible to suffer from withdrawal symptoms even using Klonopin twice a week for 7 weeks. If your nervous system is hyper-reactive due to kindling, then it's like pouring salt into a wound that still hasn't healed from your previous benzo use. 

 

If this isn't the flu and your symptoms continue and / or get worse, you may need to take a dose every day, stabilize, and then do a slow taper. 

 

When you take a Klonopin, do your flu symptoms completely resolve? 

 

 

 

Posted

Thanks Shep. I appreciate your time in responding.  I took one last night and still woke up with flu symptoms although not as bad. I guess I will know if in another 7 days I have another bout of flu like symptoms

  • Moderator Emeritus
Posted

Please let us know how you're feeling over the coming days. 

 

 

Posted

Thanks. I still have symptoms (headache, nausea, chills, but no fever). I had them yesterday and they are a bit less today. If it were withdrawal would the dose of klonopin I took the other night have made the withdrawals subside immediately or would it have been gradual. 

  • Moderator Emeritus
Posted

Usually people feel better within an hour or two of taking the dose, so it's usually rather quick if the symptoms are truly coming from withdrawal. 

 

Since you are feeling better, it sounds like you may be slowly healing from the flu.

 

When did you last take a Klonopin? Please add the dates (or range of dates for periodic use) in your signature.

 

Account - Settings - Signature

 

 

Posted

Thanks Shep! Aside from a headache I feel much better today, so sounds like it might just be the flu. Last dose was 5/17. I updated my signature. I hope to not take any more from here on out given that I do not have any withdrawals. 

Posted

Glad you are feeling better

May 2018:  1 dropper liquid marajuana

june 2018. Trazadone ambien 10 mg

july 2018 seroquel 37 mg ambien 2.5mg lex 5

October 2018 taper seroquel added hydroxizine 25 mg

nov ambien taper lex taper 

dec 2018 off of lex off of phenibut

 

October 2018- added a lot of supplements.  night: 3mg melatonin Passion flower tincture valerian tincture lavender magnesium glycinate liquid gaba herbal blend Theanine 450 mg tryptophan 1.5 grams 

May 2019. Down to the following at night 

4-6 mg hydroxizine. 250 mg tryptophan (1/2 pill).75 mg melatonin pill .75 herbal blend pill magnesium citrate 

Feb 2020:Off all supplements and pills.

  • 4 months later...
Posted

It has been a year since my insomnia nightmare began. Things are not getting better. I go days without sleep only to then get a few hours. Because of this the anxiety is getting worse and worse as well as the depression, which in turn makes the insomnia even worse. I have recently quit my part time job and moved in with my parents because I can not care for my 1 year old daughter or myself any longer. I need to sleep. I am losing everything and something must be done to make me sleep. I have done 6 months of CBT-I with zero improvements. I don’t care anymore if I’m on a med for life, I just need to sleep. Sadly I’ve tried most of the sedating antidepressants meds for a few nights a while back and none of them worked. I tried to reinstate amitriptyline back in December after having been off for about a month at my original dose of 25mg. It worked for sleep the first night but not afterwards. I only stayed on it for a few days. I tried again in January at 12.5mg and again, same thing. Worked the first night, but not after. I stayed on that for about 9 days. It confuses me as to why the  reinstatement worked only the first day and not afterwards. Should I have given it more time? Is it likely that if I had given it more time I might have begun sleeping again? Is reinstatement even an option now? If reinstatement has the chance of giving me my sleep back I would do it in a heart beat. 

Posted

I am so sorry to hear you are not improving.    I did not see any improvement for more than a year and then I started seeing small improvement.     the only thing that worked for me was time along with lots of food and spending every day at the beach.  I also ordered grounding sheets which helped.   
 

none of the meds helped, and only made things worse.   My partner has been caring for me for the last two years- he cooks every meal for me and holds me in the night when I scream.   
 

please hang in there.   It will get better.    
Of course I am not a dr. So if you have a dr you trust maybe they can help.   
 

I do feel now I am much better even though I still have awful waves.     The daily sunshine helped me a lot.    

May 2018:  1 dropper liquid marajuana

june 2018. Trazadone ambien 10 mg

july 2018 seroquel 37 mg ambien 2.5mg lex 5

October 2018 taper seroquel added hydroxizine 25 mg

nov ambien taper lex taper 

dec 2018 off of lex off of phenibut

 

October 2018- added a lot of supplements.  night: 3mg melatonin Passion flower tincture valerian tincture lavender magnesium glycinate liquid gaba herbal blend Theanine 450 mg tryptophan 1.5 grams 

May 2019. Down to the following at night 

4-6 mg hydroxizine. 250 mg tryptophan (1/2 pill).75 mg melatonin pill .75 herbal blend pill magnesium citrate 

Feb 2020:Off all supplements and pills.

  • Moderator Emeritus
Posted
16 hours ago, Jen1234 said:

Is reinstatement even an option now?

 

Please add a signature. Include drugs, doses, dates, and discontinuations & reinstatements in the last 12-24 months. Also include supplements. This will help us give you the most accurate advice we can. 

  • Any drugs and supplements prior to 24 months ago can just be listed with start and stop years. 
  • Please use actual dates or approximate dates (mid-June, Late October) rather than relative time frames (last week, 3 months ago) 
  • Spell out months, e.g. "October" or "Oct."; 9/1/2016 can be interpreted as Jan. 9, 2016 or Sept. 1, 2016. 
  • Please leave out symptoms and diagnoses. 
  • A list is easier to understand than one or multiple paragraphs. 
  • This is a direct link to your signature:  Account Settings – Create or Edit a signature.

 

On 5/18/2019 at 7:07 AM, Jen1234 said:

I have taken klonopin for 7 weeks twice a week either .5 or 1mg as I have complete insomnia (1-2hrs a night for 8 months now)  I haven’t taken it for 9 days and have flu like systems and an upset stomach.

 

Did you come off the Klonopin or are you still using it? 

 

 

Posted

Thanks, I had one and then tried to add more content and ended up erasing it. I see many people’s signatures are more than the 12 allotted lines. Is there a way to provide a signature with more than 12 lines. 

 

I have not used the klonopin since June 5th

  • Moderator Emeritus
Posted
On 10/14/2019 at 8:47 AM, Jen1234 said:

Should I have given it more time? Is it likely that if I had given it more time I might have begun sleeping again? Is reinstatement even an option now? If reinstatement has the chance of giving me my sleep back I would do it in a heart beat. 

 

Hey Jen, we cannot predict whether reinstatement will help you. Only you can decide and see for yourself. Have you read the threads on reinstatement by Brassmonkey? The mods only suggest reinstatement during a specific window of time after a fast taper. They say that after 3-4 months since your last dose, you might become hypersensitive to the drug and have a paradoxical reaction. So be very careful if you choose to go with reinstatement. I was able to reinstate and it worked for me, but I was within the window.

 

We can’t go back and change the past. We can only move forward.

 

 @Goosie Are you me? Haha. I also have found great benefit from sunshine, good food, quality time with others, and I even use a grounding mat too! It’s a weird concept but it works for me.

Apr 2018: Began 10 mg Amitriptyline (for headaches & insomnia from concussion).

Jul - Aug 2018: Fast taper to 5 mg and then 2.5 mg (too fast, hellish withdrawal at 2.5 mg). Sept 2018: Reinstated 10 mg (many symptoms improved). Oct 2018 - Apr 2019: Updosed & stabilized on 11 mg (2 waves at 3 and 5 months post-withdrawal). Apr 2019 - Apr 2020: Tapered 0.5-0.25 mg per month using compounded pills: 11 mg —> 6 mg. (2 waves at 12 and 16 months post-withdrawal.) Apr 2020 - present: Switched to a liquid taper at rate of 0.1 mg per month. Currently: 1.1 mg. No more waves. 

 

Supplements: Omega-3 fish oil, Vit B12, coenzyme Q10, Hawthorn extract (for tachycardia) Tools for insomnia/waves (as needed): Epsom salt foot soaks, 0.5 mg Melatonin, quality time, waves WILL PASS. Lifestyle: Eat real foods, mostly plants; sunlight, walking, yoga; symptom tracking on adapted Glenmullen chart.

Posted

Thanks composter. I haven’t read through brass monkeys thread on reinstatement so I’ll do that. Wish there was a way to know if it would work or not. I tried reinstating once in January but only for a week and not at my original dose. I didn’t react badly to it, it just didn’t help. My fear is that if reinistatement doesn’t work I don’t want it to be setting me back to day 1 again. I also don’t even know if amitriptyline is the culprit. If could have been the lexapro, so I guess I won’t take the chance and will just grit and bear. Thanks for taking the time to respond 

  • Moderator Emeritus
Posted
20 hours ago, Jen1234 said:

Thanks, I had one and then tried to add more content and ended up erasing it. I see many people’s signatures are more than the 12 allotted lines. Is there a way to provide a signature with more than 12 lines. 

 

I have not used the klonopin since June 5th

 

You may be able to copy and paste it from Word or Google Docs to get the formatting that can allow for more lines. I believe it was moderator Brassmonkey who mentioned that the software here sees it as a short paragraph when it comes from a word processor and will allow it. 

 

1 hour ago, Jen1234 said:

Wish there was a way to know if it would work or not. I tried reinstating once in January but only for a week and not at my original dose. I didn’t react badly to it, it just didn’t help. My fear is that if reinistatement doesn’t work I don’t want it to be setting me back to day 1 again. I also don’t even know if amitriptyline is the culprit. If could have been the lexapro, so I guess I won’t take the chance and will just grit and bear.

 

It will helpful to know your history with Klonopin (and any other benzos), as well as a timeline for your other drugs.

 

Then we can help you set up a game plan.

 

 

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
×
×
  • Create New...

Important Information

Terms of Use Privacy Policy