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HugHK: Amitriptyline taper attempt gone bad


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On 1/2/2022 at 5:12 AM, getofflex said:

Hugh, no I didn't.  However, I have been keeping a daily journal for the past 6 months and I'm finding that my waves are correlating with things like stress, volatile weather, major changes in my routine, intense exercise, being overstimulated, etc.  You might try keeping a journal, and writing down what you eat, your sleep patterns, your activities, etc, and see if you can't find any correlations of any of these factors with an uptick in symptoms.   This can be pretty helpful.  

OK thanks for getting back.

 

One other question I have: Overall I think I suffer slightly from breast enlargement due to the medication (which is indeed a side effect for Amitriptyline). Nothing huge, but I've personally noticed it and it seems to be on breast more than the other (I am a guy so obviously it's a problem). 

 

Does this subside as I taper to a lower dose? For the moment, I haven't noticed any improvements (currently taking 57.5mg), so it's getting rather frustrating and a bit worrying too

 

 

 

 

Nov 2019: put on amitriptyline 100mg for insomnia. Worked great, sleep back to normal by March 2020

Jan 2020: Amitriptyline down to 50mg. Some withdrawal for two weeks.

April-May 2020: tapered off amitriptyline a first time over 6 weeks. withdrawal.

June 2020: reinstated amitriptyline 50mg a first time. Things improved progressively for 6 months. Backto normal in November

December 2020: new attempt at tapering amitriptyline (from 50mg), slower this time

February 2021: 30mg amitriptyline... withdrawal starts

March 2021: reinstatement 35mg amitriptyline, then 50mg late march.

April 2021: increased dosage to 75mg; Kindling started, HORRIFIC.

July 2021: reinstatement clearly made things worse so I decide to taper slowly again, at 2.5mg per month

March-April 2022: I hit 45mg amitriptyline dosage, withdrawal has drastically improved, symptom intensity down to 2 or 3 out of ten. Able to exercise, drink etc no issues. I pause the taper. I have stayed on 45mg of amitriptyline ever since.

May 2022: New wave of withdrawal, lasts until January 2023 (nerve pain in my skull)

May 2023: New wave, this time anxiety and pins and needles in my head, much like the kindling reaction in 2021. Not sure what caused it. Wave still ongoing.

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  • 3 months later...

Here's an Easter update on some thoughts:

 

now down to 45mg of amitriptyline, so far things are going ok although very slowly... sleep holding up too. 

 

I still have symptoms of that 'kindling' experience from last year (about a year ago now):

 

  • weird feeling of being startled, slight electric current going through my brain and my feet, occasional light headedness especially after spor.
  • resting heart rate still a bit rapid, some palpitations after / when exercising but perhaps less so than a few months back
  • still have a case of low grade man boobs which I will need tog et removed via surgery in a year's time when I am stable on my medication.

Sadly, the pace at which things are getting better has slowed over the last several months... meaning, as the situation continues to improve, the time horizon for being back to fully normal only gets longer... To tell the truth, this is really frustrating to me as intense cardio remains a distant prospect at this time.

 

 

In charts:

 

(I only started rating daily symptoms inmate July - data for May-July is just a hindsight average);

 

272170387_Screenshot2022-04-16at1_30_07PM.thumb.png.4a909768fa3ab964568fed1ec8cfdcb7.png

 

 

In chart above, orange line is weekly average (7 day moving average), red line is 30 day moving average. In the below, orange line is 3 month moving average. Recently, to see any real improvements I have to look around 3 months back (I don't feel much better in April than I did in March, or in March than I had in Feb for eg). Windows and waves are pretty clear from the organ line which shows weekly variations

 

2011853504_Screenshot2022-04-16at1_29_51PM.thumb.png.920afb79db4cdda58dd2fc143c0c012b.png

 

 

On the positive side, drinking occasionally doesn't seem to have any effects on my symptoms, meaning I can actually have some fun occasionally when I have events on. 

 

My goal is to continue tapering at 2.5mg every month or so, down to 35mg. Then I will likely stay there for a while ( a year or so to stabilise at that lower dose), before tapering slowly to 25mg (and likely staying there for good). 

 

 

What a nightmare this has been... and it will continue to restrict my quality of life for the majority of this year at least. 

Nov 2019: put on amitriptyline 100mg for insomnia. Worked great, sleep back to normal by March 2020

Jan 2020: Amitriptyline down to 50mg. Some withdrawal for two weeks.

April-May 2020: tapered off amitriptyline a first time over 6 weeks. withdrawal.

June 2020: reinstated amitriptyline 50mg a first time. Things improved progressively for 6 months. Backto normal in November

December 2020: new attempt at tapering amitriptyline (from 50mg), slower this time

February 2021: 30mg amitriptyline... withdrawal starts

March 2021: reinstatement 35mg amitriptyline, then 50mg late march.

April 2021: increased dosage to 75mg; Kindling started, HORRIFIC.

July 2021: reinstatement clearly made things worse so I decide to taper slowly again, at 2.5mg per month

March-April 2022: I hit 45mg amitriptyline dosage, withdrawal has drastically improved, symptom intensity down to 2 or 3 out of ten. Able to exercise, drink etc no issues. I pause the taper. I have stayed on 45mg of amitriptyline ever since.

May 2022: New wave of withdrawal, lasts until January 2023 (nerve pain in my skull)

May 2023: New wave, this time anxiety and pins and needles in my head, much like the kindling reaction in 2021. Not sure what caused it. Wave still ongoing.

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  • Moderator Emeritus

It sounds like you are doing very well for a person in withdrawal.  Good job on the tapering.  Just be sure to do an exponential taper, especially as you get to the lower doses.  That means you do a percentage of your current dose, so that the reduction gets smaller and smaller the lower you go in your dose.  

Please do not private message me.  Only tag me for urgent questions about tapering and reinstating - thank you.  

 

***Please note this is not medical advice.  Discuss any decisions about your medical care with a doctor who understands psych meds and how to withdraw from them, if you can find one.

 

Lexapro   Started Apr 15 2010 - 10 mg;  started taper August 2017, recent taper info: Apr 2 '20  0.18 mg; Jul 16  0.17 mg, Aug 23  0.16 mg, Oct 7  0.15 mg, Nov 8 - 0.14, Jan 16 '21 - 0.13, Feb 7 - 0.12, Feb 22 - 0.11, Mar 26 - 0.10, May 21 - 0.09, June 15 - 0.08 Aug 16 - 0.07, Oct 6 - 0.06, Nov 21 0.05, Dec. 17 0.04, Jan 14 '22 0.03, Feb 19 0.02, Apr 18 0.01, May 15 0.005,  Jul 8, 0.00.  Psych Drug Free as of July 8, 2022!!  Woohoo!!!

other meds: Levothyroxine 75 mg

magnesium in small amounts at 4 AM, before bed

suppl AM: fish oil, flax oil, vit C, vit E, multivitamin, zinc

suppl 8 PM: magnesium 350 mg, extended release vitamin C, melatonin 2 mg

 

Paxil 2002 - 2010, switched to Lexapro 2010 

Trazodone 50 mg. 2002 - 2019, fast tapered in 2019 

Xanax 0.5 mg as needed 2002 - 2019, up to 3x weekly 

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  • 1 month later...
  • Administrator

How are you doing, @HugHK?

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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5 hours ago, Altostrata said:

How are you doing, @HugHK?

Hi, thanks for asking, 

 

I'm actually not doing that well at all if I'm honest. 

 

late April I felt like I was 80-90% back to normal overall: I still had a slight weird feeling in my Brian like a sort of electric current going around, but much less potent, and still had an electric current in my feet at times and lastly occasional heart palpitations and air hunger. 

 

Then my worst symptom which I had last year came back out of nowhere on the 6th May, after a 6 month absence.

 

This is what it looks like since last summer (but in reality has been going since last feb - I only started recording symptoms since last summer):

 

image.thumb.png.27e0c5bbfac82967e1c297fda8c2416a.png

 

What I call hyper-alertness here is actually a form of extreme unease, with a physical sensation in my brain that makes me super uncomfortable, and sensitive to things like sound noises, adrenaline etc...

 

Beyond the fact that I was still tapering slowly until early April to get down to 45mg, I don't understand how this is even possible, and frankly I'm trying not to think about it because there is no rational answer and it just annoys me to think about it. 

 

I had a brief window for 5 days up to Wed this week, and even felt mostly normal Tuesday-Wed. I was starting to think it might be over, and then had two absolute shockers on Thursday-friday.

 

I guess the problem is that the last time this symptom appeared over night in, it lasted around 9 months, so there's a good chance I'm in for a 2nd catastrophic year. As for the other symptom in blue on the chart, I also thought I was 2-3 months away from never hearing about it again, but actually I think i'm going to be stuck with it for many more months considering the lack of improvement over the last few months.

 

I still can't believe how long this has been going for. At this point I've totally lost contact with about half my friends from not going out, and will likely have to ditch my cousin's wedding this fall. 

 

I'm about as frustrated was I've ever been and the prospect for normal life, which seemed so close a month and a half ago, aren't even on the cards for the foreseeable future anymore. 

 

Hope things are well with you, and thanks again for checking in!

Nov 2019: put on amitriptyline 100mg for insomnia. Worked great, sleep back to normal by March 2020

Jan 2020: Amitriptyline down to 50mg. Some withdrawal for two weeks.

April-May 2020: tapered off amitriptyline a first time over 6 weeks. withdrawal.

June 2020: reinstated amitriptyline 50mg a first time. Things improved progressively for 6 months. Backto normal in November

December 2020: new attempt at tapering amitriptyline (from 50mg), slower this time

February 2021: 30mg amitriptyline... withdrawal starts

March 2021: reinstatement 35mg amitriptyline, then 50mg late march.

April 2021: increased dosage to 75mg; Kindling started, HORRIFIC.

July 2021: reinstatement clearly made things worse so I decide to taper slowly again, at 2.5mg per month

March-April 2022: I hit 45mg amitriptyline dosage, withdrawal has drastically improved, symptom intensity down to 2 or 3 out of ten. Able to exercise, drink etc no issues. I pause the taper. I have stayed on 45mg of amitriptyline ever since.

May 2022: New wave of withdrawal, lasts until January 2023 (nerve pain in my skull)

May 2023: New wave, this time anxiety and pins and needles in my head, much like the kindling reaction in 2021. Not sure what caused it. Wave still ongoing.

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I guess what I am struggling the most is the timeframe (or in fact the lack of timeframe to get better), and also the wider implications on my life long term. 

 

I'm meant to undertake a big professional move later this year, which I was pretty confident about up to early May. It's not certain that I'll still be feeling **** in the latter part of the year, but it's actually becoming pretty likely. I could ask to postpone but I already did that by a year and it might not go down well.

 

Currently I live in Hong Kong where the weather is nice all year round, and I can go to the beach and chill on the weekend 10 months a year... If I move to London in the fall, I could be in for a very dark winter: without being able to exercise or drink, London is a lonely and dark place in the winter in comparison to tropical Hong Kong...

 

Essentially to cum it up I have important life events coming up and this current wave is jeopardising everything. Going to mull it over in the next few weeks, and will try and make up my mind. 

 

 

Nov 2019: put on amitriptyline 100mg for insomnia. Worked great, sleep back to normal by March 2020

Jan 2020: Amitriptyline down to 50mg. Some withdrawal for two weeks.

April-May 2020: tapered off amitriptyline a first time over 6 weeks. withdrawal.

June 2020: reinstated amitriptyline 50mg a first time. Things improved progressively for 6 months. Backto normal in November

December 2020: new attempt at tapering amitriptyline (from 50mg), slower this time

February 2021: 30mg amitriptyline... withdrawal starts

March 2021: reinstatement 35mg amitriptyline, then 50mg late march.

April 2021: increased dosage to 75mg; Kindling started, HORRIFIC.

July 2021: reinstatement clearly made things worse so I decide to taper slowly again, at 2.5mg per month

March-April 2022: I hit 45mg amitriptyline dosage, withdrawal has drastically improved, symptom intensity down to 2 or 3 out of ten. Able to exercise, drink etc no issues. I pause the taper. I have stayed on 45mg of amitriptyline ever since.

May 2022: New wave of withdrawal, lasts until January 2023 (nerve pain in my skull)

May 2023: New wave, this time anxiety and pins and needles in my head, much like the kindling reaction in 2021. Not sure what caused it. Wave still ongoing.

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  • Administrator
20 minutes ago, HugHK said:

Beyond the fact that I was still tapering slowly until early April to get down to 45mg

 

Do I understand from your chart that you started having withdrawal symptoms in November but keep tapering into April? How much amitriptyline are you taking now?

 

Your chart would be much more useful if you also plotted dosage against symptom pattern.

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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16 minutes ago, Altostrata said:

 

Do I understand from your chart that you started having withdrawal symptoms in November but keep tapering into April? How much amitriptyline are you taking now?

 

Your chart would be much more useful if you also plotted dosage against symptom pattern.

 

Nope I started having withdrawal symptoms in Feb last year, and they got worse when I reinstated and then upped the medication dose. the peak of my withdrawal last year was May-September.

 

things improved quite a bit starting in October and continued to improve throughout the fall, winter and early spring, despite the taper at 2.5mg every 3-4 weeks. 

 

By the time I reached 45mg, I started having some other strange symptoms such as slight, transient insomnia, and gastritis, so I decided to stop the taper there for now. Sadly I got hit by a surge in symptoms starting on the 6th May. 

 

I am slightly torn between:

 

-Sticking to 45mg for at least a year (which is my current preferred option - give it time to get back to normal, enjoy some normal life etc), and then tapering slowly down to 35mg in a year or two.

 

-since I am feeling **** anyway and can't do anything, continuing the taper throughout the summer wind to 35mg and stay there for good after. 

  • essentially get it all out of the way in the same withdrawal streak instead of risking another withdrawal bout in the future
  • I found that this symptom bothering me subsided last year even as I continued to taper so perhaps it will do the same this time around
  • Overall I am convinced that tapering slowly between July 2021 and April 2022 helped me achieve my target of getting on a. lower dose, without prolonging the withdrawal since symptoms gradually improved anyway. 

 

 

Chart with added med dosage - the reason I didn't include is because frankly I don't think they have any effect on withdrawal symptoms. windows and waves are mostly random events 

 

image.thumb.png.332e6f0e75d196dcfb459c8cb63b55a4.png

 

waves were regular at 1-2 per month last a few days to ten days, and occurred at any point in the month. My current surge in symptoms happened around a month after the last taper, which could be linked, or not...

 

Listening to doctor's advice of reinstating when WD first hit in Feb 2021 and upping the dose in April 2021 was the worst decision I ever made, and is what landed me in the position I am in today. 

 

 

Nov 2019: put on amitriptyline 100mg for insomnia. Worked great, sleep back to normal by March 2020

Jan 2020: Amitriptyline down to 50mg. Some withdrawal for two weeks.

April-May 2020: tapered off amitriptyline a first time over 6 weeks. withdrawal.

June 2020: reinstated amitriptyline 50mg a first time. Things improved progressively for 6 months. Backto normal in November

December 2020: new attempt at tapering amitriptyline (from 50mg), slower this time

February 2021: 30mg amitriptyline... withdrawal starts

March 2021: reinstatement 35mg amitriptyline, then 50mg late march.

April 2021: increased dosage to 75mg; Kindling started, HORRIFIC.

July 2021: reinstatement clearly made things worse so I decide to taper slowly again, at 2.5mg per month

March-April 2022: I hit 45mg amitriptyline dosage, withdrawal has drastically improved, symptom intensity down to 2 or 3 out of ten. Able to exercise, drink etc no issues. I pause the taper. I have stayed on 45mg of amitriptyline ever since.

May 2022: New wave of withdrawal, lasts until January 2023 (nerve pain in my skull)

May 2023: New wave, this time anxiety and pins and needles in my head, much like the kindling reaction in 2021. Not sure what caused it. Wave still ongoing.

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  • Administrator

It appears you had a withdrawal symptom, "hyper alertness", which gradually decreased while another withdrawal symptom, "feeling startled", continued to decrease at a lower rate, until something happened in May, possibly the decrease to 45mg, that triggered another wave of "hyper alertness". Or, it could be "hyper alertness" is an adverse effect of the higher dosage of amitriptyline that diminished as you decreased the dosage.

 

Withdrawal symptoms typically fluctuate, fade, and transmute into other symptoms. Staying at 45mg amitriptyline for a while seems like a good plan, to allow the last bout of symptoms to fade.

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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  • 8 months later...

So it looks like I've been hit by a new symptom which is something I'd not had at all in the past: shortness of breath.

 

In general all my symptoms have been getting much better, but this is really something that appeared out of the blue in early January. It may have been triggered by a bad reaction to caffeine (had a few espresso martinis one night around then), or to bring out beta blockers (tried Nebivolol starting Xmas time and came off this medication progressively in January starting 3rd January).... Either way it's really been plaguing me since the onset. Symptoms every day, but some days are worse than others. particularly uncomfortable when I've got to walk up a hill or on some days even just for mundane conversations where I have to pause to catch my breath. 

 

I've done loads of medical tests (blood works, ECG, chest scan, blood O2 levels) all are fine. 

 

Has anyone figured out a way to limit symptoms / do anything about this? Breathing exercises have little to no effect on it. 

Nov 2019: put on amitriptyline 100mg for insomnia. Worked great, sleep back to normal by March 2020

Jan 2020: Amitriptyline down to 50mg. Some withdrawal for two weeks.

April-May 2020: tapered off amitriptyline a first time over 6 weeks. withdrawal.

June 2020: reinstated amitriptyline 50mg a first time. Things improved progressively for 6 months. Backto normal in November

December 2020: new attempt at tapering amitriptyline (from 50mg), slower this time

February 2021: 30mg amitriptyline... withdrawal starts

March 2021: reinstatement 35mg amitriptyline, then 50mg late march.

April 2021: increased dosage to 75mg; Kindling started, HORRIFIC.

July 2021: reinstatement clearly made things worse so I decide to taper slowly again, at 2.5mg per month

March-April 2022: I hit 45mg amitriptyline dosage, withdrawal has drastically improved, symptom intensity down to 2 or 3 out of ten. Able to exercise, drink etc no issues. I pause the taper. I have stayed on 45mg of amitriptyline ever since.

May 2022: New wave of withdrawal, lasts until January 2023 (nerve pain in my skull)

May 2023: New wave, this time anxiety and pins and needles in my head, much like the kindling reaction in 2021. Not sure what caused it. Wave still ongoing.

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