Tridentata: amitriptyline failed taper with failed reinstatement

[Tridentata]

I've made some unfortunate choices regarding amitryptiline use, owing to bad luck and insufficient research beforehand, so any advice you have to help me get stabilized will be appreciated. I'll be seeing my primary care doctor about this in several days but don't know whether he'll have useful advice or referrals.

 

Just over 3 months ago I was prescribed 10 mg/day of ami for IBS-like symptoms by my GI doctor (I had asked him about the medication myself, seeing that it is commonly used for IBS; I was aware of the dangers of sudden discontinuation but didn't do enough research to learn how hard it can be to taper off.) I had no side effects on the 10 mg except some fairly mild fatigue during the day. In mid-October, having read more about tapering difficulty and feeling that my symptom relief wasn't huge enough to justify continuing the med, I started to taper off it. I had no guidance on this from GI doctor or pharmacist (both mentioned "taking a tablet every other night"), but used pill-splitting to get down to 7.5 mg and then 5 mg without any withdrawal effects (though I did have sleep disturbance when I tried reducing from 10 to 5 at first). I bought a set of graduated cylinders so that I could use a water suspension to drop down more exactly, and had successfully (no withdrawal symptoms) tapered to 3 mg by November 8, a bit less than a month of taper. I realize now that this is considered a very fast taper, even without having been on ami for too long, but I was doing fine with it.

 

Then the bad luck: the taper did lead to some flare of GI colon symptoms, and at the same time I freaked out about a newly discovered GI issue that I thought was more serious than it was (a bulge I thought might be rectal prolapse; turned out to be hemorrhoids). I was temporarily desperate to minimize straining by soothing my colon, so I jumped back to the 10 mg ami dose, figuring I had been ok with it before and not knowing how problematic a reinstatement like that could be (I hadn't yet learned the word "reinstatement", sigh). That was a bit over two weeks ago. I had some sleep disturbance the first night on 10 mg, so I dialed back for about a week to 8 or 9 mg, when my sleep starting degrading a bit. One week ago I tried 6 mg but because I was having sleep-onset insomnia (rare for me) I added another 4 mg before returning to bed. That night I "crashed" in terms of sleep quality: long wakeful periods and elevated heart rate (average bpm 80 by my Fitbit, up 10 or more from the previous week or so).

 

The next day I learned from feedback on another support group about why the reinstatement was causing problems, basically that I was now in withdrawal mode and going back to full dose was "confusing" my central nervous system. Someone recommended dropping back to the 3 mg taper dose, so I did, a bit above it just to hedge my bets. That worked a charm for four nights: heart rate back to average 70 bpm, basically normal sleep. Night 5 (two nights ago)... not so good. Waking with elevated HR, unable to get back to sleep; not quite as bad as the 10 mg reinstatement crash but not great. Last night, still about 3 mg, same thing. Sleep disruption, elevated heart rate, and aggravation of pre-existing tinnitus are my only real symptoms now.

 

So my big question is: where to go from here? My GI symptoms have ramped up but that may be a function of the withdrawal's effect on my system (stress can produce IBS symptoms after all). Seems like my top priority is to get to where the withdrawal symptoms are minimized, ideally by getting off amitriptyline entirely, but I don't know whether to try upping the dose a bit (say to 5 mg) to hope for stability before resuming taper; staying where I am for a while; or continuing a slow (how slow?) taper to try to get off the med entirely. Realizing now that I may be needing to think in terms of weeks or months for all this rather than days, hard as that is to think about.

 

(Attached: Screenshots of Fitbit record of sleeping heart rate on my last night at 3 mg during taper, and on the worst "crash" night at 10 mg)

[Tridentata]

My original post has been in pending status for a couple of days, so an update: since then, I've had two normal nights after 3 mg ami, so far as sleep and heart rate go, so I'm hoping I've reached a stable point where I can stay for a bit. Question remains on taper strategy going forward (speed etc.). I'll never know now, but it seems as though my system might have been ok with the steady fairly quick taper from 10 to 0, but I have to respect the disruption that reinstating caused.

[Onmyway]

Hi @Tridentata, 

welcome to SA and thank you for filling in your signature. 

The thing that the nervous system likes most is stability and so I would advise that you stay on 3mg for at least 4 weeks and do that even if symptoms occur. Compared to what is possible in withdrawal, your symptoms are very mild so don't make things worse by jumping up and down which would certainly cause more confusion for your nervous system. 

 

IT is not unusual for withdrawal symptoms to be mild at the higher doses - I had no symptoms going from 40-5mg of citalopram but all hell broke loose when I went from 5 to 0. These drugs' potency is very high at the lower doses and gets only slightly higher when you increase doses further - hence we recommend an exponential taper - not tapering by more than 10% of your previous dose every 4 weeks. That will go on for years as the cuts will get smaller and smaller but will be the harm reduction technique and hopefully without symptoms. 

 

During this process you will need to not worry very much about heart rates and sleeping an hour less here and there etc. Your system may very well 'protest' at times. I understand that having a disease like IBS can make you hypervigilant about symptoms but in withdrawal that can drive you crazy because symptoms change every day. I am speaking here from personal experience. Hopefully holding for a couple of months now and not going up and down/skipping doses or using alcohol or other psychoactive substances (incl. prescribed drugs) can stabilize you so your withdrawal will not be symptomatic. It is great that you caught these subtle changes early on and learned about withdrawal and came here. It must be really hard living with such chronic disease where you constantly need to find info and remedies for yourself. Good thing is it has made you a good self advocate and vigilant about getting information now which may have saved you years of suffering. Bottom line - you caught it early and came to us and seem to be stabilizing at the current dose and have the information needed to do it in the least symptomatic way possible. 

 

This thread also provides a lot of useful information and links to other threads. 

 

https://www.survivingantidepressants.org/topic/300-important-topics-in-the-tapering-forum-and-faq/

 

OMW

 

 

 

[Tridentata]

Thanks, Onmyway! Still at 3mg. The last couple of nights weren't great, pretty frazzled and tinnitus worse during the day, but I'm managing to get through a full day of work even if at less than 100% and feel like there's nothing I just can't cope with for now. And I've read enough here & in other support groups to know that counts as good.

 

There's an initial temptation to want to taper off more quickly just to "get it over with", and maybe also with the thought that the longer I stay with tapering the longer I'm on ami at all, and wouldn't it be good not to be on for so long? But I guess from the experience of people who've been through this, that's like having your fuel gauge on empty and driving twice as fast to get to a gas/petrol station before you run out? (Of course the exact wrong strategy.)

 

I'll report back with any significant changes and in the meantime will appreciate feedback/experience from any and all.

[Onmyway]

1 hour ago, Tridentata said:

But I guess from the experience of people who've been through this, that's like having your fuel gauge on empty and driving twice as fast to get to a gas/petrol station before you run out?

So perfectly said @Tridentata, I may steal your analogy!

Slow and steady wins the race here because when things go wrong with a fast taper there is NOTHING to do, even reinstatement doesn't always work and you might be left suffering miserably for years. I think you will be OK - you haven't been on this drug long and you may not have many symptoms while tapering. 

 

I hate how amitriptyline is prescribed so often for various things - I reviewed the evidence for it being prescribed for migraine and it was based on a study with less than 200 people from the 80s funded by the manufacturer (with evidence that it was misreported) - it was never approved by the FDA but it keeps being prescribed for everything related to neurological pain or anything 'neurological-like' like IBS. I got it offered for a misdiagnosis of migraine and refused it flat out. Since withdrawal I have become super vigilant about any new treatment or drug. 

 

Keep taking your 3mg dose and once you feel back to normal you can lower by 0.3 mg  to 2.7mg and continue doing so. It will feel faster when you have no symptoms. 

 

OMW

[Tridentata]

@Onmyway, I guess I'll never know what would have happened if I had just stayed at 10 mg amitriptyline for several months. It was helping my symptoms--not actually IBS proper but long-term effect of radiation proctitis, very annoying tenesmus that is apparently connected to changes in sensitivity of the nerves in the rectum. So ami is prescribed as a neuromodulator. There's not really any on-label systemic medication for it--another off-label one is gabapentin, but I guess that's another one that causes withdrawal problems for some people?

 

Do people ever have success with a slow updosage back to original Rx strength after a fast taper? I don't think I'm seriously considering that--the benefits would have to outweigh the risks. The quality of life hit from bad ami withdrawal is worse than QOL from bad tenesmus plus there may be other effectiive safe modalities like PT + biofeedback (if I could ever get the local motility clinic to schedule me for an appt!).

[Tridentata]

On 11/30/2022 at 9:36 PM, Onmyway said:

Keep taking your 3mg dose and once you feel back to normal you can lower by 0.3 mg  to 2.7mg and continue doing so

@Onmyway, if you or anyone else reading this thread has feedback: I've been at 3 mg for exactly two weeks now and it has been very much up and down: four nights of decent sleep, four of fair, three of good again, then a decline to very poor sleep last night (where the sleep disruption is I guess from cortisol surge and corresponding elevated heart rate that makes sleep quality lower than normal even when I am sleeping). Is this roller coaster likely to smooth out such that I "feel back to normal" consistently? How long would I want to stay here before deciding that stabilization is not really happening? If I thought that a slight dose increase could provide more "normal" I might try it; on the other hand if I'm going to be sleeping poorly and exhausted much of the time no matter what, I guess a continued slow taper is my best option?

[Onmyway]

Hi @Tridentata, 

one night of poor sleep and mostly normal otherwise is not a reason to worry. Keep at this dose and pls update us with the symptoms. Even if you have bad sleep for a while eventually you will normalize. Do you have any other symptoms? 

OMW

[Tridentata]

Only other definite symptom is tinnitus--which I already had, but the withdrawal makes it worse. 

[Tridentata]

I'd say I have stabilized and have started my first 10% taper from 3 to 2.7 mg.

 

I've been tracking my dosages and symptoms plus Fitbit scores using a spreadsheet. I just added a column for 7-day moving average and it is a helpful confirmation of the stabilizing as it is moving in the right direction. Fitbit scores don't always correlate with how I feel the next day (even before ami WD) but as an average they're a good indicator of sleep quality / health.

[Tridentata]

After nearly a month of stable withdrawal with minimal symptoms (mild sleep disruption some nights, increased tinnitus), I've had a destabilization or "wave" episode that I could use feedback on.

 

Coming of an Rx of 10 mg amitriptyline, I was at 3 mg for about a month through last December 14 (having messed myself up with a full reinstatement a month earlier). As of three days ago I had tapered to 2.5 mg and been at that dose for two weeks. Then two nights ago I had a "crash": insomnia, waking 4-ish with elevated HR, probable cortisol flare, inability to get much more sleep. Ditto last night, with heart rate levels that increased at a near 45-degree angle from sleep onset through waking around 4 and mostly staying awake. Again, this felt like a cortisol flare.

 

I have a primary suspect as a trigger for the crash: two nights ago between dinner and bed, as an experiment to see if it would help sleep plus some shoulder pain I've had, I ate a full-spectrum CBD gummy (25 mg CBD, 2 mg THC). The amount of THC is considered below psychoactive level, but it was probably still a dumb thing to do. Although I felt close to zero effects while awake (maybe a bit calmer, certainly not buzzed), it may have been the primary cause for my symptom relapse.

 

Problem is, it isn't the only variable: I'd been dealing with shoulder pain this past week, and started taking celecoxib (Celebrex), then switched to ibuprofen; and because I've often had acid reflux caused by NSAIDs, I started taking Nexium 4 days ago. I'm pretty sure this was the first time on NSAIDs since being on amitriptyline, and definitely first time on PPIs. And on top of that I've had a moderate upper respiratory infection. So: a lot of variables that could interact with the WD. Anyway, I have a couple of questions:

• Is it reasonable to figure that the CBD gummy was the main problem, or are NSAIDs or PPIs known to trigger symptoms during WD?
• Either way, I guess I need to hold tight at 2.5 mg for another two or more weeks to try to stabilize?
• Makes sense to discontinue the PPIs and NSAIDs to get back to my baseline state of medicine/supplement intake before the crash?

[Tridentata]

@Onmyway -- sorry to bother you but my taper seems to have crashed/destabilized (see previous post) and I could use advice. During my entire taper following unfortunate reinstatement to full dose on 9 November, my crashes/waves of bad sleep disruption have been few and short, mostly not lasting more than a couple of nights before improvement. The current wave has lasted 5 nights. Symptoms are consistent with cortisol flare/disruption, waking with elevated HR and inability to get back to sleep, pretty standard WD symptoms from what I've been learning. Question is whether I stick it out at the 2.5 mg I've been at for 20 days now, or try a slight reinstatement to say 2.75. I may have tapered a bit too fast from 3 to 2.5; I was pretty stable at 3. But most advice I see here is to try to hold at a dosage in hope of restabilization.

 

I've got a home cortisol test coming today that should tell me whether elevated cortisol levels is the culprit.

[LostInCanada]

On 5/25/2023 at 6:33 PM, Tridentata said:

I've been following the 2.5%/week reduction plus two-week hold after 4 reductions for a while now, and my WD symptoms are much milder--very little sleep disruption, nothing like a real "wave" for several weeks. Wondering whether, if that continues to be the case, it might be worth trying a 3%/week reduction, aiming at 12% over 4 weeks then 2 week hold. Current schedule would have me tapering for a bit over two more years (down from original 10 mg); shaving four months off that wouldn't be huge but would make the light at the end of the tunnel a little brighter. Experience of others who have done something similar with success (or the opposite) would be helpful!

@Tridentata  it’s fantastic that the brass monkey slide is working so well for you. Why mess with that? This community  is based on the success of a maximum 10% monthly taper. If there was a safer faster way it would be promoted. You have jumped around a bit with your dosages in a short period. Slow and steady wins the race. Remember as the dose lowers it can become more difficult as well. You are doing well.

 

  

 

Edited May 29, 2023 by manymoretodays
moved to members Introduction, to keep their topic updated, added quoted post from BrassmonkeySlide topic in tapering

[Tridentata]

I'm sure you're right, and having experienced what an unstable taper is like it's not something I want to repeat. It just seems bizarre now and then that I'm on less than a quarter of the lowest prescribed dosage (in my country) of amitriptyline but looking at months to get off it entirely. But I understand that's the nature of the beast.

[LostInCanada]

@Tridentata I totally get it. Big pharmacy knew what to do to keep us stuck on this stuff. It’s going to take me 4 years if it goes smoothly.

[Tridentata]

For what it's worth, I've just had night 3 of the first wave in over a month. The symptoms for me are very recognizable and consistent: waking around 4 a.m. with difficulty getting back to sleep, then waking again toward 6 with very broken sleep until my normal waking time of 7 or later. The good news is that the intensity is lower. When I was first tapering without a specific schedule, the sleep disruption of waves with elevated cortisol (I assume) and heart rate affected me through most of the following day and made me feel like a zombie. This time around, it's annoying but a lot less disruptive, and I'm sure the Brassmonkey taper schedule makes the difference.

Edited May 29, 2023 by manymoretodays
moved from tapering topic, to members topic(3 posts relevant to members progress)