SurreyGuy: amitriptyline is my poison ...

[ChessieCat]

Just to clarify my post.  I wasn't meaning for you to start tapering again straight away, but that when you do, that it might be better to make a smaller reduction.

[SurreyGuy]

On 10/13/2022 at 8:26 AM, Altostrata said:

 

Might be time to take a long vacation from tapering, let your nervous system accommodate to the lower dose.

 

Yes, quite possibly... I will play it by ear and see I feel over the next 1 or 2 months...

[SurreyGuy]

On 10/13/2022 at 8:59 AM, ChessieCat said:

Just to clarify my post.  I wasn't meaning for you to start tapering again straight away, but that when you do, that it might be better to make a smaller reduction.

 

Thanks for the clarification Chessie and understood. I so want to be free of that crap but, realistically, it's going to take a few more years to come off it completely and remain functional.

[ChessieCat]

7 hours ago, SurreyGuy said:

remain functional

 

That's the goal.  As my dose got lower it felt stupid to be taking such a tiny dose but even though I sometimes became impatient to be off, I think it was worth the time and effort to do it slowly.

 

I found it helpful to remember that it has nothing to do with being strong or determined as a person, but the brain that needs to adapt to not getting as much of the drug.

[SurreyGuy]

Yesterday was particularly challenging and today, most surprisingly, my symptoms are greatly reduced, nearly gone. Why that is? I don't know but I certainly won't complain about this great window. God knows what tomorrow will be like.

[SurreyGuy]

Time for an end-of-year plot to visualise progress...

 

[SurreyGuy]

I realise I have not posted much recently even though quite a few withdrawal-significant events took place over the past 4 months.

• I tapered down to 6mg on 2022-08-21 using what I call the 'old' amitriptyline brand of pills;
• On 2022-08-30, my prescription was renewed and I was given pills from a different generic brands (what I call the 'new' brand of amitriptyline); it did not go well;
• I believe the change in pill caused my body to absorb / metabolise the medication in a different way;
• My GP and pharmacist were of the views that the filler could impact how solvent amitriptyline is in the liquid I was using at the time (hazelnut milk);
• My GP and pharmacists tried to help and prescribe me liquid amitriptyline (1mL equates 5mg of amitriptyline) - their views are that it would be be more accurate to titrate the medication; I tried liquid amitriptyline once on 2022-10-07 and it was a disaster. Went back on new brand of amitriptyline the next night.
• On 2022-10-22, I switched from hazelnut milk to water to dilute the new type of amitriptyline pills;
• On 2022-10-29, I gave up and up-dosed to 6.3mg (using the new pill diluted in water);
•  On 2022-11-29, I tapered to 6mg, still using the new pill diluted in water;
• On 2022-12-11, my prescription was renewed and, this time, I got the 'old' amitriptyline brand of pills. I tapered to 5.5mg (using the old pill diluted in water);
• On 2022-12-18, I tapered by accident to 5mg (old pill, diluted in water) and have been sticking to 5mg since then...

I am not sure what conclusions to draw from the above anecdotal information but I will try (for the sake of future users on this forum):

1. Assuming different generic brands of amitriptyline pills carry the same correct amount of medication (both my GP and pharmacist believe it to be the case), it would appear my withdrawal experience is sensitive to pill filler. Whether the filler affects the solubility of amitriptyline or affect the way my body metabolises amitriptyline, I do not know.
2. It seems that hazelnut milk and water are pretty much equivalent when it comes to liquid tapering with amitriptyline hydrochloride pills: I did not experience any change in my symptoms. I'm guessing the small amount of fat (lipid) in hazelnut milk may not be high enough to make any significant difference to solubility (when compared with plain water).
3. I do not know what to think of the prescribed liquid amitriptyline. When I tried switching to it at 6mg, it did not go well. It could be because my pill dilution technique* is poor and I was taking in fact much more than 6mg (causing me to taper down when I switched to 6mg liquid medication); or it could be that the concentration of the liquid medication (5mg per 1mL) is too high to to allow me to accurately taper (I use 1mL syringe so 6mg was 1.2mL). Who knows? Sorry science, I am not in the mood to further experiment on myself. 

I am now at 5mg, half of where I was 1 year ago and I am happy with that progress. Next check point will be end of March 2023.

 

Happy new year!

 

*pill dilution technique: in a very small plastic bottle, I place a 10mg amitriptyline hydrochloride pill and add 10mL of liquid (water) using 1mL syringe x10 times. I close the bottle and wait for 1h or 2h. I then give the bottle a very good shake for 30s or so. I then extract whatever quantity I need to extract. I add water to what's left in the bottle, give it a shake again and drink it. I add a bit more water to rinse any leftover and drink it. >> If you believe my technique could be improved please let me know! <<

 

 

[Erimus]

Good progress. Looks like you’re much better informed, and on top of things, than when you started.

 

Whatever your method of administration, just keeping it consistent is your best solution. I’ve been in positions where I am sensitive to changes in generic forms of the medication. If you want to nitpick you can collect the ingredients from the patient info leaflet each time you get a different generic, but I try not to spend too much time obsessing over those variables these days. I’ve found that a lot of generics have either the same ingredients or only one different.

Edited December 31, 2022 by Erimus

[SurreyGuy]

I have a question and would welcome other members' views on the matter.

 

Given that many of the psychiatric drugs are metabolised in (or through) the liver, I was wondering if the liver could get "tired" over the years because of the daily need to metabolise the drug. If so, is there anything I can do to support/regenerate my liver through withdrawal (beyond eating a balanced diet and avoiding alcohol)?

[Erimus]

You can ask your doctor to do liver function tests using bloods. The main one is the liver enzyme values, if these are high it indicates inflammation in the liver is causing extra enzymes (from metabolising drugs) to leak into the bloodstream. Given your now low dose of amitriptyline and the fact you have removed other prescribed medication I would hazard a guess that things are ok.

 

The best thing about the liver is the fact it can repair and regenerate so well. It’s a good idea to have blood tests every 12 months or so when you’re in withdrawal like this for so long.

[Kostas]

Hi 

When on citalopram 20 mg ,my liver transaminases were elevated twice the max value ..

As soon as were off the drug for 6 months, the values dropped to normal levels .

Check your values ,and if considered too high ,your doctor will advice you,if it is necessary, to reduce your drug, until they drop  into more acceptable levels. 

Normally the liver is amazing how well it recovers without any help ,when the external  irritation is eliminated ..

[SurreyGuy]

@Erimus, thanks for the advice. I will look into getting some blood tests done with a focus on liver.

 

@Kostas, thanks for sharing your experience.

 

[SurreyGuy]

Day 7 post taper to 4.5mg. So far so (surprisingly) good... waiting for the wave...

[SurreyGuy]

And in the end, the wave came. Around 8-9 days post taper. A very typical pattern as far as I am concerned. It will take a couple of weeks for most symptoms to subside and become tolerable again at which point it will be time to taper again...

[SurreyGuy]

Went down to 4mg a couple of nights ago. Constipation, tinnitus and insomnia are on the menu.

[SurreyGuy]

Aha!

 

https://www.thetimes.co.uk/article/nhs-plan-gps-help-millions-stop-using-antidepressants-painkillers-728xzsqwc

[SurreyGuy]

The past 2-3 days have been rather challenging. I was doing well after my taper to 4mg. I went through my usual insomnia symptom pattern: 

• 1-2 days post taper: acute phase of insomnia due to reduction in amitriptyline.
• 3-14 days post taper: my body metabolises the amitriptyline and the relative amount of nortriptyline in my blood stream increases. During that period, my sleep gradually improves and I tend to become hyper/high 😁 (I believe those are the activating effects of nortriptyline); 
• 14-21 days post taper: my body metabolises the "excess" of nortriptyline thus returning to the pre-taper amitriptyline/nortriptyline ratio. During that period, my sleep gradually deteriorates (I sleep less and less, down to 2-3 hours a night; the "cortisol rush"(?) at 2am or 3am wakes me up and prevents me from going back to sleep and sometimes I even struggle falling asleep at the beginning of the night);
• 21-28  days post taper: my sleep gradually improves. Typically, I manage going back to sleep after waking up in the middle of the night. Initially, I can sleep another 30min - 1h after waking up, gradually I sleep longer and longer after waking in the middle of the night. Very slowly, my sleep improves to about 7h-8h of sleep per night with one wake-up in the middle of the night.

At that point, I know I can taper again.

 

For various reasons, this time, I decided to stay on 4mg a bit longer so I was really surprised when I experienced an intense wave on day #36 post taper. No sleep at all for one night (that was the night when I went out with colleagues, no alcohol for me). Since then, my sleep is gradually improving again. To be honest, insomnia is not my only symptom, far from it. 

 

Anyway, I am not sure there is any conclusion to draw from the above except that my body is very slow when it comes to metabolising that bloody drug...

 

 

[SurreyGuy]

Suffering from crippling insomnia and anxiety at the moment. 😢 I don't know what to do about it. Am at the end of my wits. I don't seem to have any lasting windows since my last taper. I have 1 or 2 "decent" nights/days per week and that's it... I am scared I am broken beyond repair and it will be years before I can complete my taper... I so hate that brain of mine... I so hate the doctor who put on that crappy drug... And then there is stress from work, which doesn't help, but as the main bread earner, I don't have a choice but to suffer and continue...

 

Sorry for the moan...

[SurreyGuy]

I changed pill manufacturer a couple of weeks ago when I renewed my prescription and I wonder...

[Carmie]

Hey there @SurreyGuy

 

Sorry to hear you’re struggling so much with insomnia, it’s awful when it’s bad. Changing the manufacturer of your medication can cause waves, lots of people on here have had problems when they’ve changed to a different brand. It might take a while for you to settle while you’re brain gets used it. You’re not broke beyond repair. 
 

Also, maybe you should hold longer between your tapers. The holding is just as important as the amount you taper by. It might be a good idea to hold longer than a month each time. I’ve been holding for about six or seven weeks each time lately. I’m only tapering at around 1.5% but if I go any quicker the withdrawals get really bad. 
 

There’s no cure for insomnia, but some things might help. Do you get sunlight into your eyes first thing in the morning and wear blue light blocking glasses in the evening? I always put on blue light glasses in the evening. I wear glasses, so I just put clip ons over them. There are nights I don’t sleep well, but I’m much worse when I don’t put on the blue light glasses. 
 

Sending you hugs🤗
 

 

[FindRest]

You might want to consider getting back to your old manufacturer. Many people have issues after changing manufacturers while tapering. All generics are not equal. You’d be amazed to learn how much variance the FDA allows between name-brand and generics, and between generics. It would be a good idea to have your pharmacy put a “no substitutions” clause on your records so that you will always get the same manufacturer.

Edited April 17, 2023 by FindRest

[Carmie]

45 minutes ago, FindRest said:

You might want to consider getting back to your old manufacturer. Many people have issues after changing manufacturers while tapering. All generics are not equal. You’d be amazed to learn how much variance the FDA allows between name-brand and generics, and between generics. It would be a good idea to have your pharmacy put a “no substitutions” clause on your records so that you will always get the same manufacturer.

Good idea FindRest, I’ve stuck with the same generic for years. Changing certainly causes problems. Good idea to put a “no substitutions” clause there too. The pharmacy that used to get my generic in wasn’t going to get it in anymore, so I just went to a different pharmacy, who also didn’t stock it, but they ordered it in for me. I’m always concerned if they decide to stop making it and I have to change to a different brand. 
 

@SurreyGuy Is the generic you were using still available? If you do swap back, it might still take a while for your brain to stabilise because of the changes you’ve made. 
 

Take care💛

[SurreyGuy]

Folks,

Thank you for your messages and advice. Last time I had to renew my prescription (it was online renewal), I did ask for pills from the same manufacturer (I even attached a picture of the med box) but my request was simply ignored... Doctors, here in the UK, do not recognise the issues we face with pills from different manufacturers,  are simply ignorant, uneducated or simply do not care...

[SurreyGuy]

Today I feel much much better (yesterday I was very very wavy) so I guess I will carry on with my withdrawal...

[Faure]

On 10/14/2022 at 9:59 PM, ChessieCat said:

As my dose got lower it felt stupid to be taking such a tiny dose but even though I sometimes became impatient to be off, I think it was worth the time and effort to do it slowly.

Just commenting on this post of Chessie’s. I had a bit of a lapse of discipline last week. I was on 3mg and felt impatient. I decided to do a double drop last Monday (to 2.8mg),  overall while I felt good for a couple of days the fatigue was worse than usual after that so I have recommitted to sticking to the plan (BrassMonkey slide for me). It’s such a pain!  I just want to be off but I don’t want to get ill getting off. One lapse in nearly two years isn’t too bad. I am finding it easier and easier as I drop, I know others find it harder. 
 

I’m glad you’re feeling better. It is very tricky with some chemists to get the same brand. I have built a relationship with my local chemist who are very accommodating so it might be worth getting them locally rather than online fulfilment. Online really won’t care!   I have rejected meds that aren’t the right brand (you need to do that there and then because if you leave the chemist shop they won’t exchange the meds).  In January I had to change brand because mine had been out of stock for well over 6 months and I couldn’t see that changing. I did a cross over at 25% a week. It was fine although I had to do an extra 2 week hold. It turns out there was an error in the calculations a friend did for me and I did an extra 4% drop at the same time!!  I was very glad it wasn’t a 4% updose 🙄

Edited April 18, 2023 by Faure

[SurreyGuy]

Hi @Carmie, thank you for your comment. The blue light filtering glasses are definitely worth it. I have been wearing those in the evening for the past 2.5 years. I highly recommend them.

 

@FindRest, I try the "no substitution" trick next time I renew my medication. I tried last time (though I did not use the "no substitution" words) and they did not listen to me. Hopefully, this time, they will.

 

@Faure, I know the feeling! I too would like to be rid of this drug once and for all, overnight. Unfortunately, my body doesn't see it that way. So, it's slow taper for me. It took me 2 months to go from 4mg to 3.5mg. Will see how I feel at 3.5mg.

[SurreyGuy]

Not feeling great at the moment. Anxiety and insomnia have been hitting me particularly hard for the past 3 days. I pray my state will improve as I have a job interview this Wednesday and some other important face to face meeting on Tuesday. Those events may well be what's driving the wave I'm in. I don't know for sure...

I think my anxiety symptoms in the last 2 drops have been harsher than in the previous drops. So far I have been decreasing linearly (0.5mg) but I think I may have to start decreasing more slowly (i.e. 10% of previous dose, as advised by this website).

 

[Faure]

Sorry to hear you’re not feeling great. You should definitely do the 10% of the last dose.  It’s the safest way. I tried to speed up recently (I did one hold week instead of 2) and had a week where I’ve been totally exhausted. So I’m back to the proper BrassMonkey slide! It just isn’t worth the risk and I got pretty scared I was going to get ill when I’ve spent 3.5 years building myself up to where I am now. I hope you feel better soon and good luck with your interview 🤞

[Carmie]

On 6/5/2023 at 4:57 AM, SurreyGuy said:

Not feeling great at the moment. Anxiety and insomnia have been hitting me particularly hard for the past 3 days. I pray my state will improve as I have a job interview this Wednesday and some other important face to face meeting on Tuesday. Those events may well be what's driving the wave I'm in. I don't know for sure...

I think my anxiety symptoms in the last 2 drops have been harsher than in the previous drops. So far I have been decreasing linearly (0.5mg) but I think I may have to start decreasing more slowly (i.e. 10% of previous dose, as advised by this website).

 

Hi @SurreyGuy, I’m sorry that your anxiety has been so bad, I hope your job interview and important meetings went well. 
 

Definitely a good idea to stick to the no more than 10% of the previous dose per month advice. 
 

Wishing you all the best💛

[SurreyGuy]

I think tapering by more than 10% of the previous dose played a role but I also believe the stress from the interview is causing the wave of symptoms or, at the very least, exacerbating the symptoms. Anyway, thank you @Carmie and @Faure for your kind words.

 

I am wondering if there are threads on this forum on dealing with symptoms in a white collar office environment...

[SurreyGuy]

It has been just over 2 months since I last tapered down to 3.5mg from 4mg (12.5% decrease). 

When I look at the timeline since the last drop, this is the pattern:

Week 1: some insomnia, some constipation and feeling wired/high.

Week 2: feeling generally ok-ish, a bit high, some GI issues

Week 3: feeling ok-ish, some GI issues

Week 4: insomnia getting worse, anxiety and depression creeping up

Week 5: getting better

Week 6: insomnia progressively getting worse

Week 7: insomnia really bad, anxiety and depression

Week 8: getting better on all fronts

Week 9: stable, not so bad bar tinnitus much louder on one day

Week 10: insomnia getting back along with bad anxiety and depression + bad GI issues (like I have bowel cancer or something like that)

 

I am very much stuck in a wave and window pattern at the moment.

 

I have been holding off tapering again because of some events at work requiring me to be ok. However, it seems that even without any tapering, I'm not great, even after 10 weeks. I know the last drop (12.5%) was high by my standards. I have tended to be around 5% before. I will need to be careful with my next drop.

[SurreyGuy]

It's nearly 3 months since my last drop to 3.5mg and I am still suffering badly. Sure, I have had some nice windows but it's been mostly waves (that or I mostly remember the waves). This week alone, I have had 2 nights with zero sleep. After zero sleep nights I tend to suffer from many other symptoms: depression, anxiety, multiple GI issues (diarrhea, bloating), louder tinnitus (including a blocked ear), nausea, fatigue, etc. God, this is so awful... and I have to attend numerous meetings at work today. I have to smile, be happy and full of energy. How can I possibly be? I just want to disappear, make all this stop... maybe my brain will reconfigure after this massive wave... who knows...

 

I have been reflecting about the speed of my taper. I reckon I still have another 3 years to go minimum... so depressing.

[SurreyGuy]

Well, I held at 3.5mg for ca. 4 months, mostly because of professional reasons and it turned out to be a complete waste of time. So I'm back on the tappering trail. 8 nights ago, I went down from 3.5mg to 3.3mg, a modest 5.7% decrease. I'm starting to feel stronger symptoms. Any upsets (at work or at home) is now a wave trigger... I long for the day when I'm no longer taking that rubbish drug, when I am free of this depressed body/mind. 

[SurreyGuy]

A bit of an update with some info...

 

Back in July 2023, I experienced strong GI symptoms. My bowel habits changed over a period of 2 to 3 weeks during which I went to toilets 3 to 6 times a day, with very soft stools (diarrheoa) and other symptoms very similar to those of IBS or... bowel cancer. This really got my worried to the point I went to my GP and asked to have some stool tests done. The stool tests came back negative for blood, which was a great relief, but showed faecal calprotectin was raised (a sign of inflammation).

 

I was eventually referred to a GI specialist who advised to go for a colonoscopy. The colonoscopy/biopsy results came back all clear, which was further relief. By then, my GI symptoms were gone. I explained to the GI specialist my issues with amitriptyline tapering and suggested it may be the cause of my GI issues (who have since gone). Much to my surprise, he agreed with me! He said that in many GI issues (e.g. IBS), amitriptyline is prescribed to 'slow down' the guts (constipation is a very common effect of amitriptyline). He agreed that that it is not far fetched to think that when amitriptyline is reduced/taken away, the guts accelerate temporarily (causing IBS, diarrheoa, etc.) until a point of equilibrium is achieved...  

 

Bottom line: if you experience intense GI symptoms (persistent diarrheoa, IBS, abdominal cramps, etc.) for 3 weeks or more, it is probably because of your amitriptyline tapering but it is always best to see your GP and have some tests done to confirm there is nothing more sinister there.

 

This isn't exactly ground breaking news but I thought I would share that experience with the community.

[Faure]

Glad this was nothing serious for you ☺️
 

But I have to comment on the fact that anti depressants are being prescribed for this purpose, exposing yet more people to devastating WD effects when they stop. How appalling. 

[SurreyGuy]

@Faure, yes, good point. I did not challenge the consultant at the time. Note that the consultant was also suprised at my rate of taper and low dose. I had no desire to go into a lengthy explanation at the time and the consultant did not have the time anyway.