Why I Quit Taking Amitriptyline

Why I Quit AmitriptylineWhy I quit taking amitriptyline has nothing to do with its effectiveness as a sleep agent. I slept just fine while taking amitriptyline, even though I have fibromyalgia. It was all the other side effects I didn’t like. Here’s the story.

I woke up this morning much sooner than I’d really like. Just ninety minutes after the last time I got up to pee and six hours after getting into bed. I’m best on between eight and nine hours’ sleep each night. But that’s not what I got last night. And that’s not what I’ve gotten any night over the past three weeks.

I suppose this is to be expected, given I’m still in the so-called “withdrawal” phase of quitting my fibro-related sleep drugs. I’ve tried to quit before. But have never made it this long before collapsing back into the familiar, fuzzy and welcoming embrace of the meds that have been helping me sleep. Really sleep.

My Amitriptyline History

Quitting AmitriptylineFor fifteen years, I’ve been taking amitriptyline at night. Just 10 – 20 mg, to help me sleep. The day I was first prescribed amitriptyline was also the day I was formally diagnosed with fibromyalgia. As I interview other friends with fibro for the book I’m writing, The Trauma Trigger, I am seeing glimpses of how my response on diagnosis day was a bit different from others’. I’m hearing stories about profound relief. About a long-awaited validation that something really was wrong, that it wasn’t all in their head.

But that’s not what happened for me. I was devastated. I didn’t want to have an invisible disease, or syndrome, or disorder, or whatever you want to call it. I didn’t want to have a condition for which there is no cure. And I was so sad that there was no relief in sight for my debilitating symptoms. But I think I was devastated most of all by the amitriptyline. An antidepressant! I was horribly upset that I — the optimistic, sunny, smiling, I-can-do-it-all person – needed an antidepressant. I cried.

My Shattered Self-image

Broken hearted woman is crying,silhouette,Valentines day conceptThis was not conforming with the picture of myself that I’d held for so long. Apparently, I’d painted this self-portrait in blurry water-based hues of (what’s that favorite color of mine – fibro fog is keeping the name from me – oh yes) periwinkle and peach and plum. Maybe a bit of hot pink for an accent. This one flimsy refillable prescription with my name on it rinsed all of the carefully applied paint on the canvas of my life. I feared the only thing underneath was grey. Dull and grey. With smudges of deep crimson for pain.

But I digress. The point is that I’m quitting amitriptyline. And while it really has been enhancing the quality and duration of my sleep, and personal experience has taught me the importance of good quality sleep as the foundation for healing and pain reduction related to fibromyalgia, the truth is I’m tired of the downside.

The Downsides of Amitriptyline

Downsides of AmitriptylineNote the downsides, plural. Such as the:
◦ Sluggishness, in my brain and bone marrow, that lasts the next day until noon, whether I take the tablet at seven p.m. or eleven p.m.
◦ Suspicious impact it has on my weight, which has been an issue and sore point for me my whole life, even those times when I achieved slim. I don’t need any help from medication in the “hanging on to weight” area.
◦ Cost: it’s a regular monthly expense I don’t need right now. Self-employment, at least my kind, doesn’t come with drug benefits.
◦ Unknown impact on inflammation in my body, and
◦ Urinary retention.

Urinary Retention

Urinary Tract Infection

Urinary retention. None of the medical professionals who examined me over the last decade looking for the cause of my recurrent UTIs ever made the connection between this fine-print side-effect of amitriptyline. But we’ve recently moved from Canada to Mexico, in pursuit of a lifestyle that would make it easier to manage my fibro. It was my new favorite doctor here in Mexico that said, “You know that one cause of UTI is urinary retention and that urinary retention is a side effect of amitriptyline?” No, I didn’t know. And he suggested I quit taking amitriptyline to see if it made a difference.

I’ve suffered frequent urinary tract infections since my late twenties. But they’ve been increasing in frequency over the last ten to fifteen years…do you see the connection? I thought a couple times a year was a lot, and so did my doctors. However, in the last five years or so I have been getting UTIs between 6 and 8 times each year.

You read that right: six to eight times a year. Back at home in Canada, I’d had every medical expert conceivable poke, prod, X-ray, scope, scan and test all parts of me looking for the reason for this ridiculous frequency of infection. No, I don’t lie around with a wet bathing suit on (actually a question one doctor asked me). I do get plenty of vitamin C. Yes, I shower before and after sex (yes, I’m still having sex, unless I have a UTI). Yes, I take probiotics daily. Yes, I use hormone cream. And yes, I drink plenty of water. And I’ve probably done or am doing or have tried whatever else you can think of to ask me, because believe me, I have been motivated to interrupt this disruptive cycle.

Antibiotic Allergies

I’ve been treated so frequently for UTIs that I’ve developed allergies to two of the three existing streams of antibiotics currently available to treat UTI. I’m swiftly running out of options on that front. In a third attempt to treat one of my most recent episodes, I agreed with my doctor that it might be time to “get radical”: I undertook a ten-day course of self-injectable antibiotics. Did it work? No, the infection returned less than three weeks later, but I do have a heightened respect for those who must daily self-inject to manage their disease. It was painful. Not just during the injection. I bruise easily and I had large, colourful, baseball-sized lumps all over my lower torso for a couple of months afterwards.

So I’ve Decided…

So these seem like pretty compelling reasons to explain why I quit taking amitriptyline and gave up those little blue pills. I chose to ride out the sleepless nights and to relish the return of full cognitive function in my suddenly-expanded number of pre-noon productive hours. This blog was written before nine a.m., for example. I’d forgotten what that feels like.

I’m embracing the fear of what might occur, of pain that might increase. And by quitting amitriptyline I’m acknowledging that I just may be opening the door to a resolution of some of my perpetually perplexing physical problems. Yawn.

This post was originally published as a guest post at Counting My Spoons.

6 thoughts on “Why I Quit Taking Amitriptyline

  1. Sister

    Wow that’s incredible. Holistic medicine really needs to be more of a norm but I don’t know practically how that can happen especially now that more of us are moving around (ahem- now/always for some!) and not seeing ‘a family doctor’

    I am wondering how the photo with “Women with symptoms of itchy urticaria” fits in I can’t find a reference to it in the article. I think I have that – my ‘family doctor’ called it ‘writing on the skin syndrome’ and I take antihistamines every day to relieve the itch it causes.

    1. Boni Wagner-Stafford Post author

      Thanks for your comment. I agree that holistic and functional medicines need to be more accessible and normal. And we need to get better at seeking it out.

      On your “itchy uticaria” and daily antihistamine routine, it’s a case in point. It seems your body is reacting to something; instead of recommending drugs to counteract the reaction, wouldn’t it make sense to try to pinpoint the cause so you can change whatever it is to resolve the issue? Have you had allergy tests? What about seeing a naturopath? It could even be that your body is rebelling against the antihistamine!

      Thanks for pointing out the caption on the rash image. I neglected to remove the caption when I uploaded the photo: itchy uticaria doesn’t have anything to do the blog, except that is one of the possible reactions I get to the ‘wrong’ type of antibiotics. I’ve fixed it up now.

      I do hope you get resolution for your rashes, in a way that’s friendly to your body!

  2. Andrea haigh

    I too have stopped amitriptyline,mainly as it was a possibility that it was contributing to palpitations. Now taking gabapentin but it is causing poor memory, more fibro fog. Just wondering how coming off meds affected the symptoms like restless leg, muscle twitching, jerks, depersonalisation( feeling unconnected to your environment) slurred speech, dizziness etc. They are the symptoms I find most distressing and hard to cope with. Pain is awful put I can use technique to deal with it.
    PS enjoyed the web chat last night.

    1. Boni Wagner-Stafford Post author

      Andrea, thanks for your comments. I’m glad you enjoyed the live FB chat – I did too! I did not notice any worse symptoms from quitting amitriptyline EXCEPT for sleep. I am sure I’m in the minority, as doctors all advise not to quit cold-turkey due to withdrawal. And now that you mention it – – my restless leg syndrome and muscle twitches are better! Not gone, but better than they were before, when I was taking amitriptyline. My dizziness comes and goes about the same, whether on or off the meds. I think I had a bit more dizziness in the few weeks right after stopping the meds, but now it’s just periodic. I hope that helps?

  3. Chris

    nice read found here after seeing a tweet, I’ve just started amitriptyline reduction after months of zombie state and tiredness all day after taking it at night, i take Duloxetine amitriptyline tramadol morphine gabapentin baclofen. at night for Inclusion Body Myositis. i’ll try anything to have a live back in a morning and afternoon.

  4. Pingback: Can You Really Have Fibromyalgia And Be Med Free? | BClear Writing

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