soliDg: amitriptyline withdrawal

[soliDg]

Hi, and thanks for so much letting me join the community here. Below is my current history.

 

AMITRIPTYLINE HISTORY (PUT ON THIS FOR GUT ISSUES)

- - All these symptom/severities are atypical for me. - - 

Early Dec 2019 - 10mg, ~6 weeks - depressive episodes started, foggy, gut slower than normal

Late Jan 2020 - 20mg, ~1 month - depressive episodes, foggy

Late Feb 2020 - 10mg, 2 weeks - flu-like aches, foggy

Early Mar 2020 - 5mg, ~4 days - very strong flu-like aches, emotionally ragged, foggy

Mid Mar 2020 - 10mg, ~1 month - flu-like aches, after break emotionally ragged again, foggy

Late Apr 2020 - ~15mg, ~2 weeks (pill cutter) - flu-like aches, foggy

Early May 2020 - ~16mg, ~2 weeks (pill cutter) -  foggy

[Mid May 2020 - 1 episode of diarrhoea] instantly followed by severe ongoing depression, tingling scalp, foggy

Mid May 2020 - 17mg - 4 months (compounding chemist) - severe ongoing agitation, then severe ongoing depression (tingling scalp), then both, foggy, memory problems

22 Sept 2020 - 1 missed dose - felt almost normal

23 Sept 2020 - 10mg - depression

24 Sept 2020 to present - 17mg - ongoing depression, severe agitation, tingling scalp, fogginess, memory problems, gut still slower than normal

 

OTHER CURRENT MEDS

Multivitamin: Since early 2017 - 1 tablet, irregularly; since Sept - 1 tablet, daily

Motillium: Since late 2017 - 10mg, 3 times a day

Movicol: Since early 2017 - varied amounts daily

Ural: Since ~Sep 2020 - ~4 sachets a day

Electrolyte: Since Jul 2020 - ~1 tablet, irregularly

Vitamin C Powder: Last several years - ~1 teaspoon, irregularly

Coloxyl + Senna: Since ~Late Nov 2020 - ~2 tablets, irregularly

 

PREVIOUS MEDS (TAKEN BETWEEN 2017 AND 2018)

Ondansetron, metaclopramide, simethicone (also briefly in 2019), prochlorperazine, valium, fluoxetine, oxazepam, olanzapine, pregabalin, atenolol, perindopril

 

Thanks in advance for any help with this. I really appreciate what you do here.

Edited November 15, 2020 by Gridley

[Gridley]

Welcome to SA, soliDG.  Thanks for the helpful information and signature.

 

Looking at your history, it seems to me that the symptoms you mention, all of which are typical withdrawal symptoms, stem largely from you fast taper early in 2020.  How are you feeling now at 17mg?  If I'm reading your post correctly, you've been holding at that dose since May of this year, correct?

 

When the time comes for you to taper again--and when will depend on your answer to the question above--we recommend tapering by no more than 10% of your current dose every four weeks.  It's very good you're now using a compounding pharmacy.

 

Why taper by 10% of my dosage?

 

So that you have a better idea of what you've been experiencing, here is some information on withdrawal and the healing process.

 

What is withdrawal syndrome.

 

Daily Checklist of Antidepressant Withdrawal Symptoms (PDF) 

 

When we take psychiatric medications, the CNS (central nervous system) responds by making changes over the months and years we take the drug(s). When the medication is discontinued, the CNS has to undo all the changes it made. Rebuilding the neurotransmitter production and reactivating the receptor and transporter cells takes time -- during that rebuilding process symptoms occur.  

 

These explain the healing process really well.

 

Brain Remodelling 

 

Video:  Healing From Antidepressants - Patterns of Recovery

 

We don't recommend a lot of supplements on SA, as many members report being sensitive to them due to our over-reactive nervous systems, but two supplements that we do recommend are magnesium and omega 3 (fish oil). Many people find these to be calming to the nervous system. 

 

Magnesium, nature's calcium channel blocker 

 

Omega-3 fatty acids (fish oil) 

 

Add in one at a time and at a low dose in case you do experience problems. Get supplements that are single ingredient (not mixed with other types of supplements).  We don't recommend multi-vitamins because if there's a problem, you won't know the cause.

 

This is your Introduction topic, where you can ask questions and connect with other members.  We're glad you found your way here.

 

 

 

 

[soliDg]

Hi Gridley, and thanks so much for all this information.

 

Yes, I’ve been holding at 17mg since May (with that missed dose exception). While the amitriptyline caused depression before tapering, a lot more problems happened after.

 

I have been awful on the 17mg - to the point of considering an emergency admission earlier on this year. Whilst I have learnt a few strategies for dealing with symptoms (thankfully), I have continued to have severe symptoms - significant depression (perhaps decreased since May) and agitation (increased since May).

 

The symptoms seem a lot more difficult to manage than what I experienced on 10mg.

[Gridley]

29 minutes ago, soliDg said:

and agitation (increased since May).

I'm sorry you're experiencing these increased symptoms.  Protracted withdrawal, which it appears you are in the midst of, will eventually fade and heal, but unfortunately there is no way to predict how long it will take.

 

 Consider the magnesium and omegas (one at a time and at a low dose) that I suggested earlier.

 

This restorative yoga pose is helpful for anxiety.

 

10 minute Restorative Yoga for Relaxation | Up the wall

 

[Mia1]

Hi,

Just read your posts. I’m coming off of Amitriptyline myself, am down from 50 mg to 9mg. I notice every time I decrease my heartbeat is irregular for about a week and I have increased anxiety. Does this happen with you?

[soliDg]

Hi Mia1,

 

Sorry to hear that you're having to deal with that, that sounds pretty rough. I personally haven't experienced those symptoms, but have read similar things on a Facebook Amitriptyline group.

[soliDg]

Hi, it’s now been 8 months on 17mg of amitriptyline. I continue to have many of the same severe side effects from this medication (depression and agitation), without sign of it going away. (I haven’t tried the magnesium or fish oil yet sorry, although I do take a multivitamin which is required for another condition).

 

Do I:

• go back up to 20mg (which is a LOT cheaper than compounded scripts)
• hold for longer and try supplements
• start tapering (I can drop 0.1mg every few days)

 

The side effects seem very serious at this point.

 

Thanks for any help.

[soliDg]

Well, that’s some ridiculously large text...! I’ll try to see if I can fix it when I’m back on my computer....

[Mia1]

I’m so sorry you’re going through this. Have you tried meditation? I’m also tapering Amitriptyline and found that a practice of meditation every morning has helped A LOT with my thoughts which had been affecting my mood. Sending you good vibes.

[ChessieCat]

  

1 hour ago, soliDg said:

I’ve been on 17mg of amitriptyline for 8 months now. I’m not confident that I’ve seen any change in side effects for months.

 

The symptoms (severe agitation, depression, brain fog amongst others) have had a significant impact on me, my finances, my safety, my health and my relationships, and I’m not convinced that waiting is helping any area of health other than my coping strategies.

 

What should I do?

 

A - go up to 20mg (my highest dose before decreasing to 10mg then 5mg, was more ‘stable’ but still caused some depression; also a LOT cheaper)

 

B - hold longer

 

C - start dropping (I can get 0.1mg or lower doses to make for smoother transitions)

 

D - ????

 

My body had a negative response to this drug prior to withdrawal - the original reduction of dose just seems to have added to the sensitisation. Because of this, and the significant lack of change for the last while, I’m not yet convinced that holding is the best idea.

 

Thanks for any help with this!

 

If nothing else has changed/happened (see below) that may have made things worse during this time then you could try a tiny reduction.    It  is really the only way to find out if you can start reducing.  This would be a test to see how reducing affects you.  If you reduce and things worsen a bit then that you know that is not the answer.  If you reduce and feel no worse or possibly feel a bit better then you can make a bit bigger reduction after about 2 weeks.

 

What other things have been going on during the 8 months.  Of course covid, riots and election.  How have these affected you?  Have you been sick, or had surgery?  Taken antibiotics, other new drugs (non psychiatric) other supplements (or stopped)?  Have you been drinking alcohol?  Any deaths or other stressful events (eg relationship breakdown, financial issues, moving).

 

If any of the above or similar have happened then possibly holding for longer might be the better option.

 

If you did decide to updose, then my suggestion would be only a very tiny amount.  Definitely NOT back to 20mg.  It is better to start with a small amount and increase gradually than to risk taking too much, which could make things a lot worse.  It takes about 4 days for a dose change to get to steady state/full level in the blood, and a bit longer for it to register in the brain.

 

Please update your drug signature when you make a change so that it remains current.

 

Please let us know what you decide to do and update us on how things go.

 

 

[Mia1]

How are you doing?

[soliDg]

On 2/20/2021 at 8:10 AM, Mia1 said:

How are you doing?

Hi Mia,

 

Thanks for asking! (And sorry for not replying to your original post - not sure what happened there!)

 

I’m about 7 days out of a really rough week, but apart from that it’s been similar to the last months for me. How are you? Also, can I ask how you've found the magnesium and fish oil? I tried once, fairly close to my ami dose, and I think I ended up in a very weird and disturbing semi-dream state.

 

All the best.

[soliDg]

On 2/12/2021 at 7:05 AM, ChessieCat said:

  

 

If nothing else has changed/happened (see below) that may have made things worse during this time then you could try a tiny reduction.    It  is really the only way to find out if you can start reducing.  This would be a test to see how reducing affects you.  If you reduce and things worsen a bit then that you know that is not the answer.  If you reduce and feel no worse or possibly feel a bit better then you can make a bit bigger reduction after about 2 weeks.

 

What other things have been going on during the 8 months.  Of course covid, riots and election.  How have these affected you?  Have you been sick, or had surgery?  Taken antibiotics, other new drugs (non psychiatric) other supplements (or stopped)?  Have you been drinking alcohol?  Any deaths or other stressful events (eg relationship breakdown, financial issues, moving).

 

If any of the above or similar have happened then possibly holding for longer might be the better option.

 

If you did decide to updose, then my suggestion would be only a very tiny amount.  Definitely NOT back to 20mg.  It is better to start with a small amount and increase gradually than to risk taking too much, which could make things a lot worse.  It takes about 4 days for a dose change to get to steady state/full level in the blood, and a bit longer for it to register in the brain.

 

Please update your drug signature when you make a change so that it remains current.

 

Please let us know what you decide to do and update us on how things go.

 

 

Hi ChessieCat,

 

Thanks so much for your reply, and for all that info.

 

Regarding stability in my life, it's not completely stable but a lot of that is due to ongoing health conditions and problems that the amitriptyline itself is contributing to*. So essentially waiting feels like no guarantee of things settling. Given that this is the case, is it best for me to try a change?

 

Also, I'm wondering how I can know whether going up or down is better? I've read elsewhere of people going back up to their 'last stable dose'. Are there any indicators to look for regarding whether this is advised, or whether trying to come off is better? The drugs always had a negative effect on me, the effect just seems exponentially larger after my sudden decrease.

 

Thanks for your help, and all the best.

 

------------------------------------------------------------------

*If it's helpful, here's my response to your list of possible factors:

- International events: Thankfully some of the things which you mentioned did not affect me as much as others.

- Health: I have been sick, but that is from a pre-existing condition, which gets worse at times (and which the amitriptyline may be making worse).

- Meds/Supplements: I take supplements as a part of this condition right now, although I sometimes forget to.

- Alcohol: Rarely, and minimally

- Other/Relationships: I've had some stressful relational issues, but again these appear to be exacerbated by the amitriptyline symptoms.

[Mia1]

 

On 3/5/2021 at 1:28 PM, soliDg said:

I’m about 7 days out of a really rough week, but apart from that it’s been similar to the last months for me. How are you? Also, can I ask how you've found the magnesium and fish oil? I tried once, fairly close to my ami dose, and I think I ended up in a very weird and disturbing semi-dream state.

I’m happy to hear you are out of a rough patch, are you still experiencing agitation? This is a pretty common symptom for me, I find working out helps A LOT. What are you currently doing for it? How are you sleeping? I take both magnesium and fish oil, have been for some time now, and do find they are both very calming to my nervous system.  My dreams are so weird from the w/d of this drug, maybe that’s what you experienced?

[soliDg]

On 3/7/2021 at 6:32 AM, Mia1 said:

 

I’m happy to hear you are out of a rough patch, are you still experiencing agitation? This is a pretty common symptom for me, I find working out helps A LOT. What are you currently doing for it? How are you sleeping? I take both magnesium and fish oil, have been for some time now, and do find they are both very calming to my nervous system.  My dreams are so weird from the w/d of this drug, maybe that’s what you experienced?

Hi Mia1,

 

Yep, still experiencing agitation - not all the time, but enough of the time. I appreciate hearing from someone else who experiences that! Such an unpleasant symptom... I hadn't considered working out - I used to be more active but got sick with another condition and had to stop. I also found lots of exercise without food seemed to make my symptoms worse??

 

Sleep is 'okay' - takes longer than it used to, and I also have had more intense/unpleasant-feeling dreams (although this started before I tried to withdraw). The night I took the magnesium and omega oil, I experienced something very different - more of an in-between sleep and awake state, kind of restless and very unpleasant. Seeing as it worked for you though, I might consider trying again, just further from my amitriptyline dose. Also my versions had other stuff in them?

 

Thanks for the info and all the best.

[soliDg]

On 3/6/2021 at 4:53 AM, soliDg said:

Hi ChessieCat,

 

Thanks so much for your reply, and for all that info.

 

Regarding stability in my life, it's not completely stable but a lot of that is due to ongoing health conditions and problems that the amitriptyline itself is contributing to*. So essentially waiting feels like no guarantee of things settling. Given that this is the case, is it best for me to try a change?

 

Also, I'm wondering how I can know whether going up or down is better? I've read elsewhere of people going back up to their 'last stable dose'. Are there any indicators to look for regarding whether this is advised, or whether trying to come off is better? The drugs always had a negative effect on me, the effect just seems exponentially larger after my sudden decrease.

 

Thanks for your help, and all the best.

 

------------------------------------------------------------------

*If it's helpful, here's my response to your list of possible factors:

- International events: Thankfully some of the things which you mentioned did not affect me as much as others.

- Health: I have been sick, but that is from a pre-existing condition, which gets worse at times (and which the amitriptyline may be making worse).

- Meds/Supplements: I take supplements as a part of this condition right now, although I sometimes forget to.

- Alcohol: Rarely, and minimally

- Other/Relationships: I've had some stressful relational issues, but again these appear to be exacerbated by the amitriptyline symptoms.

Just bumping this post in case someone can answer it for me.

[Mia1]

Are your symptoms unmanageable? If they aren’t I would keep going in the direction of coming off. I’m no where near my “normal “ but I’m in deep acceptance of withdrawal symptoms and that makes it manageable for me. Why don’t you try exercise and see how that helps. Also a daily meditation practice helps tremendously. I find the more effort I put in the better I do, even those days that can feel difficult. One thing I have discovered during the withdrawal is that it’s our attitude towards the symptoms that determine how we do and not necessarily the actual symptoms. Let me know how you are doing and what you decide.

[ChessieCat]

Please research the possible side effects of the drugs and supplements you are taking.

 

Because you are taking a lot of other drugs/supplements, I think it would be a good idea for you to keep a daily symptom diary and have it assessed.

 

Please post a 24 hour period at one time.  To start with we need to see 3 consecutive days.  Here is the format we need you to use:

 

Keep Notes on Paper

 

[soliDg]

On 3/18/2021 at 11:27 PM, Mia1 said:

Are your symptoms unmanageable? If they aren’t I would keep going in the direction of coming off. I’m no where near my “normal “ but I’m in deep acceptance of withdrawal symptoms and that makes it manageable for me. Why don’t you try exercise and see how that helps. Also a daily meditation practice helps tremendously. I find the more effort I put in the better I do, even those days that can feel difficult. One thing I have discovered during the withdrawal is that it’s our attitude towards the symptoms that determine how we do and not necessarily the actual symptoms. Let me know how you are doing and what you decide.

 

Thanks for your reply Mia1, and sorry for the delay getting back!


My symptoms are 'manageable', in so far as I'm out of hospital. And I agree - learning to work with the symptoms feels like it's been an important step. Exercise I still need to be cautious about, as it can leave me feeling quite unwell (and possibly triggered a severe episode once - I wonder if that's due to the drug being released from fat deposits?), but I've tried doing a bit more since I read your advice.


I'm not as sure about meditation, as I've got some other health concerns which mindfulness sometimes exacerbates, but will see.


Keeping my thoughts positively occupied has been one of the most helpful strategies for reducing drug-induced agitation and depression, as has getting out and doing social/productive things.

Thanks again for your thoughts. Appreciate it!

[soliDg]

On 3/27/2021 at 1:33 PM, ChessieCat said:

Please research the possible side effects of the drugs and supplements you are taking.

 

Because you are taking a lot of other drugs/supplements, I think it would be a good idea for you to keep a daily symptom diary and have it assessed.

 

Please post a 24 hour period at one time.  To start with we need to see 3 consecutive days.  Here is the format we need you to use:

 

Keep Notes on Paper

 

Thanks ChessieCat.

 

I know Movicol is generally low-side effect due to how it works, but will have to research how similar Coloxyl is.

 

I've currently got a few significant changes happening, but once things settle down should be able to have a look at your symptom diary. 

 

Thanks again for your input!

 

 

[soliDg]

I’ve had a significant deterioration in symptoms.

 

And am rather desperately in need of help.

 

I have felt a huge increase in feeling ‘on edge’, worries approaching paranoia about a specific area of my life, a possible increase in heart rate and tingling sensations which accompany the worries, over my scalp and chest.

 

Most examples of my previous increases in symptoms seem to have been fairly short-lived, but this has now lasted for over 24 hrs, and I can’t recall ever feeling like quite like this.

 

The only notable life-changes in the days preceding this are a slight chest infection and an increase in exercise (which is something I’ve noted before a previous bad, but different episode). There were also some stressful relationship worries which accompanied the onset of these symptoms, but it’s unclear whether this is just a compounding issue (as it appeared to be with a previous bad episode).

 

I have mentioned before how my experience suggests hyper-sensitisation to amitriptyline. If exercise releases amitriptyline stored in the tissue, does this confirm that hypothesis? I can't say I know enough science to confirm this.

 

Also, what can I do? Is there a non-supplement solution? (I only ask this is that I seemed to have a very negative reaction to taking omega oils and magnesium when I tried them, although that was closish to my amitriptyline dose).

[Mia1]

I’m so sorry to hear you have been feeling on edge. It sounds to me like you are experiencing symptoms of anxiety: increased heart rate and tingling sensations in the body. Since exercise does not seem to be agreeing with you have you tried yoga? Even a simple stretch yoga can help lower stress and make your body feel better. And I’ve said this to you before but it bears repeating: a daily meditation practice, even 10 minutes a day, will lower anxiety and help you come back to your center when you are feeling overwhelmed. But this must be done daily for maximum benefit. I would also suggest leisurely walks in nature where you put all worries aside and focus on the beauty around you. This can be tremendously healing. 

How many milligrams are you on now and what is your plan for tapering?

[Mia1]

How are you doing?

[soliDg]

Thanks Mia, how are you? Sorry for my delay in replying. Perhaps partly due to it being a rough few months. The amitriptyline also appears to have started affecting my memory more severely.

 

I started doing walks most days, which seemed to help.

 

I started getting more consistently negative thoughts (a fairly obvious symptom) a few months ago, and it's been a bit of a battle but I have been fighting them.

 

I have just got a whole bunch of doses compounded, and was hoping to do a micro taper (daily, equivalent to 10% over the first month). I wasn't sure if my body needed to go up to my original dose or down, or how to tell that.

 

However...

[soliDg]

I've just had a sudden onset of awful symptoms, and am after some urgent advice. How would changing my compounding chemist give me bad side effects suddenly?

 

I get some of my amitriptyline compounded (I'm on 17mg, and the smallest it comes in my country is 10mg, so I get 2mg and 5mg compounded). I just switched from a compounder with a good reputation, to another one that is highly accredited. I assumed it would be okay, but last night took one of the new 2mg tablets, and the following happened:

 

- weird sinking sensation in gut about 20 mins after taking the tablet

 

Tried going to bed but got:

 

- very weird, scattered and restless thoughts

- restless body movements

- cold and couldn't warm up despite electric blanket

- every time I'd start dropping off to sleep, I got the sinking sensation in my gut again and woke up with a startle

- emotional distress

 

After a long time I got to sleep, but when I woke up, I noticed the emotional distress was there (as was the old scalp-tingling that was strong last year), and is still there now (at the end of my day). This is different from the agitation I was already experiencing, although sometimes during today it has spiralled into feelings of despair or agitation.

 

I have almost no idea what could cause this, as it's supposed to be the same dose, and both compounding chemists appear to use lab-level scales that weigh to the microgram.

 

I guess it could be something to do with the formulation or quality of the amitriptyline, but how can I tell, and what can I do if I've just spent huge amounts of money on this?

 

I could stay with this and see what happens, but the symptoms at their worst last night felt awful and frightening, and I don't know what happens if I keep taking this.

 

I'm thinking of taking 15mg (so leaving out the new tablets) for a night to see if that helps - but I don't feel confident about what to do. Any help greatly appreciated!

[soliDg]

Hi, could I get some advice on my new medication problems please? I tried changing supplier and since then have had many new problems.

 

A month ago

• tried new compounding chemist (highly accredited)
• got awful symptoms on their version of my 17mg (see previous post)
• talked with them, discovered they use a filler that increases absorption
• got them to take out the filler
• still got unpleasant emotional symptoms (extremely raw and sensitive) and tingling/aching, but a lot less
• these symptoms increased over the following days
• switched to pill cutting (10mg brand-name tablet + pill cut ~5.25 mg)
• emotional symptoms decreased again, but have been quite awful, and possibly increasing again

 

What do I do?

 

The drop to 15.25mg seems like a big one, and pill cutting is highly inaccurate (and linked to my biggest onset of serious symptoms).

But my mind is so much clearer now.

I tried dissolving in water with no success, and the tablet has a coating which hinders weighing accurately.

 

The new compounding chemist was willing to try alterations to the script without charging, but I’m not sure it’s worth risking again…

 

The old compounding chemist’s formulation resulted in fogginess, awful agitation, and assuming the worst of some people.

 

Is there a way to tell which is best, and what dose? I’ve been taking the pill cut ~15.25mg for a fortnight, and have noticed some increase in symptoms and some head warmth/light burning for the last couple of days.

[soliDg]

Bump.

Could I please get some help with this? ☝️ I'm a month now on the pill-cutting, am concerned about long-term effects, and unsure how I should progress.

[ChessieCat]

I've moved your new topic to the existing topic with an explanation of why.

 

There is also another link in my response about pain killers.

 

surgery-and-anesthesia

 

[Greatful]

@soliDgHow are you doing? I was in a similar situation with not being able to stabilize and feeling worse on the drug, possible adverse affect. It was a constant thought, should I hold longer or start tapering.  Hubby called it Withdrawal Stable Misery.  I started to taper..  As of December you tapered to 10mg.  How are you feeling?  

[soliDg]

On 6/7/2022 at 11:14 PM, Greatful said:

@soliDgHow are you doing? I was in a similar situation with not being able to stabilize and feeling worse on the drug, possible adverse affect. It was a constant thought, should I hold longer or start tapering.  Hubby called it Withdrawal Stable Misery.  I started to taper..  As of December you tapered to 10mg.  How are you feeling?  

Hi @Greatful,

 

Thanks for your message, and sorry for the delay! Memory problems haven't helped with that (caused by the drug, and not gone yet, sadly).

 

I've only hit 10mg recently (a month ago). (My signature might be a little unclear, sorry.)

 

Mostly, I'm really glad I made the decision. My symptoms have generally improved, not got worse. I did have a side-effects flare up once I started getting below 10mg (agitation/depression) but I also tapered a bit fast and had different sleep/stress factors that could have been the real cause.

 

Thanks again, and hope you're making progress in your journey too.