The time I went through withdrawal

I tell the story of a few years ago, when I went through medication withdrawal, in the hopes it may help someone else not have to go through what I did.

I was switching from nortriptyline, a tricyclic antidepressant, to another medication of a different class. I had been on various doses for about six months at that point. My doctor said coming off nortriptyline cold turkey would be, “No big deal.”

What I didn’t know:
I didn’t know how the sudden lack of medication in my system could affect me. Withdrawal was a word I had associated with the cessation of smoking and coffee drinking, both things I did not do. And nortriptyline was the first preventive I tried so I didn’t know anything about tapering. I hadn’t thought to double-check my doctor’s instructions with my pharmacist. After all, he was an award-winning headache specialist.

In reality, coming off the nortrip’ was a trip—and not a fun one. It took three days to reach out to my neurologist because I was so used to being sick at that point. How are you supposed to know when you get migraines every day that you’re sick on top of sick? After several calls and emails he did not get back to me. At that point I was desperate to know what was wrong with me. It was the one time in my adult life I cried on the phone to “mommy,” saying how scared I was.

I later read:
“Quitting cold turkey may shock your nervous system, leading to a longer, more protracted withdrawal as your physiology scrambles to make changes.  Although tapering off of Nortriptyline may require more time and patience, it allows your physiology to gradually adapt to reductions in dosing.  Symptoms tend to be noticeably less severe with a gradual taper than cold turkey.”1

So I tried my primary care doctor. I was finally able to be seen by someone at my PCP’s office, and he diagnosed me with nortriptyline withdrawal. These were my symptoms:


Flu-like symptoms:

  • Headache
  • Nausea
  • Lack of appetite
  • Lower abdominal cramping and pain
  • Diarrhea
  • Weight loss of almost ten pounds
  • Fever (was lowered when I was able to hydrate)
  • Lower Back pain

It was tough at first to differentiate these symptoms from a really bad migraine. One clue was that they didn’t respond to my regular medication, were much more severe, and a migraine had never made me dehydrated enough from diarrhea to cause a fever.

Sleep disturbances:

The insomnia and nightmares were a terrible combination because when I was finally able to fall asleep I would dream about being separated from those I love. This made me reluctant to sleep even the few short hours my body could muster. Though fatigue was definitely part of my regular migraines, insomnia and nightmares were new to me.

Sensory and movement disturbances:

  • Dizziness and vertigo
  • “Brain Zaps”

The dizziness and vertigo were also common for me during a migraine, but with the withdrawal it was more severe. A big clue to the fact I had withdrawal was the “brain zaps,” an electric shock like sensation that ran from my head and through my body. I later found out that brain zaps are a real phenomenon often associated with antidepressant withdrawal.2

Cognitive disturbances:

  • Confusion
  • Lost sense of time and direction

These can also be part of a migraine for me, but the confusion was much more profound than I had experienced before. Days and hours blurred together, and it was all I could do to keep things straight.

When I look up symptoms of nortriptyline withdrawal, I see all of what I experienced and more. One of the key things I did not experience were mood-disturbances (such as uneasiness, anxiety and agitation). I felt upset and scared about being sick and not knowing what was wrong, but thankfully my emotions stayed relatively stable considering what I was going through.

I saw my neurologist the following week—he denied it was withdrawal. I lost my trust in him that day (at least when it came to this issue), though I continued to work with him because his overall plan was helping despite this hiccup. I know that no one is perfect, even doctors. I gave him an unofficial contract to read over—it asked him to taper my meds and be available to consult with when I was going through medication changes. It also said I was willing to self-educate on any new medication I was taking. He half-glanced at it, but did concede slightly and said he’d taper my meds. It was probably about the best response I could expect from him.

Some symptoms faded in a week, others took two to three weeks. I had months of aches and fatigue afterward, diagnosed as fibromyalgia. Though I had symptoms of fibromyalgia before the withdrawal, I wonder how it possibly factored into my flare up of pain and fatigue that year.

What I learned:

  • Withdrawal is different for everyone, and can depend on the dosage, how quickly you go off the medication, and on your own body and how it tends to react to these types of things.1
  • Though I trust my current doctors, I now ask my doctor and pharmacist about tapering. I usually go with the slowest, gentlest method I can. I find I am still sensitive to medication changes even when it’s not cold-turkey.
  • I don’t wait as long again to get medical help for severe symptoms. It’s possible I could have avoided a lot of misery if I had simply mentioned my symptoms to my pharmacist and started to taper off the med.
  • I learned that when dealing with unpleasant medication changes, it will get better. But as much as I can avoid side effects, I do.

Now I want to ask, have you ever experienced withdrawal? How is your medical team about educating you on the safest, best ways to make medication changes? Have unpleasant side-effects dissuaded you from going on or off any medications? Tell me your story. And if you have been able to avoid withdrawal thus far, I hope it stays that way for you!

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Migraine.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.
View References
  1. Duration N. Nortriptyline Withdrawal Symptoms + Duration. Mentalhealthdailycom. 2015. Available at: http://mentalhealthdaily.com/2015/05/02/nortriptyline-withdrawal-symptoms-duration/. Accessed August 29, 2015.
  2. Sensations B. Brain Zaps: Causes & Treatments For Electrical Shock Sensations. Mentalhealthdailycom. 2015. Available at: http://mentalhealthdaily.com/2014/11/29/brain-zaps-causes-treatments-for-electrical-shock-sensations/. Accessed August 29, 2015.

Comments

View Comments (18)
  • Hannalou
    1 year ago

    Hi Lisa
    I’m really glad I stumbled upon your article as I’m currently going through the nortriptyline withdrawal. 3 years ago I suffered a hemiplegic migraine which at first was diagnosed as stroke (both quite uncommon in a healthy 31 year old) This resulted in what felt like a life time in hospital, lots of tests and scans (including lumbar puncture or spinal tap), moths of physiotherapy after losing paralysis down one side of my body. I was prescribed nortriptyline to help with the migraines which had never been diagnosed properly until then struggled to cope with the changes to the point where I broke down in tears at work. I went back to the doctor who then prescribed citalopram to help with the depression I was going through. Both medications have really helped and after being on them for 3 years we decided to start reducing the doses as of last week; since it has been nothing short of horrendous in experiencing most of the withdrawal symptoms you have mentioned; my doctor warned me but I wasn’t expecting them to be this bad! I’ve had great deal of support from my partner, family, friends, work colleagues, counsellor and doctor but it’s still felt like I’ve been going through this on my own despite all the love and support no one has really understood what it’s been like to be uncontrollably up and down, breaking out into sweats, crying without reason, feeling so much anger and frustration, having no energy, constant bloating, craving all things sugary (which for someone with a very savoury pallet had been incredibly difficult to manage) and the rapid weight gain which no amount of extra exercise ( which has been hard to focus on and to keep up) with a healthy diet has helped to shift any of the extra weight; I’ve felt like I’ve not been in control of anything and hope that the end result will be worth what I’m going through currently; It’s nice not to feel as though you’re the only one going through it! Despite all of the above I do see light at the end of the tunnel!

  • jbright
    1 year ago

    Thanks for the story. I’ve been on Nortriptyline for over 25 years and have ad to work my way off it due to side effects that became a problem, mainly urinary retention and an enlarging prostate with age! I agree 100% with the story. I tapered off over two months. Most difficult part wit going rpm small dose to zero dose. After 3 months I still have withdrawal symptoms but my bladder is so much better. Migraines ok with triptans etc. Still a big struggle. Nortriptyline has been a life saver fir me for a long while.

  • Skirby1
    3 years ago

    Reading these comments makes me feel a lot better of what I am experiencing, I had been on Nortriptyline for 4 years or so for chronic migraines and when I began to notice many side effects with the changing of doses, my doctor decided we try stopping the medication. At the time my headaches were very minimal and easy to deal with. He tapered me for a week and that whole week I experienced awful diahrea each morning. Once I stopped it completely, I felt so sick; like I had the flu. I didn’t even think that there would be withdrawal symptoms. I’ve experienced insomnia, waking up around 4 am with diahrea and throwing up, body aches, chills/sweats, anxiety, heart pounding/racing, loss of appetite and weight loss. Needless to say I was wondering for anyone else who has experienced withdrawal from this drug – how long did it last? I’m calling my neurologist on Tuesday after the holiday because I am in desperate need for some sort of relief.

  • Lisa Robin Benson moderator author
    3 years ago

    Hi Skirby,
    So sorry you are going through this. This sounds a lot like what I experienced coming off the nortriptyline.

    There are a few factors in how long and how severe the symptoms are–including the dosage, how long you were on the drug, and how fast or slow you tapered. It’s possible a slower taper might be helpful, but unfortunately I would say wait to ask your doctor. For me the worst of it was over in about a week, and I was much better after 2 weeks, and had some residual affects that were easier to ignore (such as the brain zaps) for a month or so after.

    In the meantime, I encourage you to make sure you’re getting enough fluids, and if you’re worried at all about being hydrated don’t hesitate to go to the ER. Feel free to reach out with any more questions.

    -Lisa

  • kateplace
    3 years ago

    Thank you Lisa for sharing this. I’m currently going through Nortriptyline withdrawal because my pharmacy spent the week not filling my RX for me. I too take it as a preventive. I was fine yesterday but today feel like I’m dying. I was able to get ahold of my neurologist but I don’t know if she’ll contact the pharmacy before they close. This is miserable. But at least I know I’m not alone.

  • Lisa Robin Benson moderator author
    3 years ago

    Hi Kate,
    I’m so so sorry you’re going through this. I hope you can get your medication ASAP. Please keep up updated for sure. Will be thinking of you.
    If I can offer you just one practical piece of advice while you’re waiting, STAY HYDRATED as best you can. Check your temperature, and do not hesitate to go to the ER if you think you’re dehydrated or are experiencing anything else you think needs medical attention. Stay safe.
    -Lisa

  • jns192 moderator
    3 years ago

    kateplace,
    Thank you for reaching out and sharing your experience. I am so sorry to hear about what you are dealing with. That must be so frustrating and scary to not be able to get your Rx filled. Once you get in touch with your doctor, perhaps s/he can write the script for every 3 weeks as opposed to every month so that you can fill your Rx before you are out.
    Please keep us posted on how you are doing.
    Best,
    Jillian (Migraine.com Team)

  • cherylg
    3 years ago

    I too went through withdrawals when quitting an antidepressant cold-turkey (at the advice of a Psychiatrist). “Wouldn’t be a problem” she said. Yeah, worst migraine of my life. (Neuro sent me to the ER as there was nothing he could do at his office.)

    So, after about a half day in the ER, they gave me a shot of Imitrex and I thought my brain was being pushed through the roof of my mouth (worse than the migraine pain). But seriously, within 30 minutes, I felt like a million bucks.

    Good luck to everyone and don’t give up!!

  • Anne
    3 years ago

    this is the danger of not having a psychiatrist involved with the decision to prescribe antidepressants (or at least the neurologist consulting one) – the brain is such a delicate organ and it’s hard to achieve balance. I’m surprised a neurologist didn’t know there would be severe withdrawal. My psychiatrist has told me all about what to expect with the antidepressants and what to expect going off the drugs before he prescribed them to me.

  • Lisa Robin Benson moderator author
    3 years ago

    Hi Anne,
    Yes I agree. A LICSW actually pointed that out to me at the time! (After it was too late, but it was an interesting insight).
    -Lisa

  • Kate
    3 years ago

    Thank you very much for sharing. I too have been through anti depressant withdrawal (as well as opioid). I tapered Cymbalta for an extended time, even taking beads out of the capsules, and I still had withdrawal symptoms for a long time after stopping it. It was pretty miserable for the entire taper (and I did a month or two I think after quickly realizing quick wouldn’t work) and the week or so after. The brain zaps continued infrequently for months, and even now years later I get one every so often.

    I too have had doctors tell me my reaction was impossible, etc. Hopefully they have become better educated over the years, but some are very stubborn, and even if multiple patients tell them something, if it goes against what they learned previously, they discount it. I definitely fire doctors like that though! Best wishes.

  • Lisa Robin Benson moderator author
    3 years ago

    Hi Kate,
    I’m sorry for your experience, though in some ways it’s comforting to know I’m not the only one being responded to in disbelief by the doctor–it makes me feel less crazy. Hopefully these doctors will get with the program!
    -Lisa

  • Erin
    3 years ago

    Thank you for sharing your experience. It sounds quite awful. My withdrawal experience was awful. I was stopping all my medications before starting a new regiment to control my migraines. My body’s reactions were nearly unbearable. My entire body felt as if my skin was trying to crawl off. It also felt like I had insects crawling underneath my skin. I also had extreme and random twitches throughout my arms and legs. It felt like I had to keep moving my arms and legs. Although moving my arms and legs didn’t actually make the sensation feel better or go away. It was so horrible that it would keep me awake constantly for almost two weeks. At one point I literally wanted to die. It took several weeks for the god awful symptoms to go away. I go out of my way to make sure I don’t experience that kind of withdrawal ever again. I hope no one here ever goes through the withdrawal symptoms I experienced. Good luck to everyone.

  • Erin
    3 years ago

    Hi Clare, you have my admiration for dealing with these symptoms for months. I wanted to die after a few days. I don’t think I could have done that. I’m also so sorry you had to go through that. I hope you’re feeling better now. I also hope you never have to go through these awful experiences again. Thanks for sharing your experience with me.

  • Clare
    3 years ago

    Hi Erin this sounds horrible and I know the feelings, I am replying because I am so fascinated to hear you describe these feelings. These feelings infact for me lasted months and months, and were what sent me finally to ER to be investigated for all sorts of things, and within three months diagnosed with migraine. Thankfully that is all it was. I didn’t know I was suffering migraine. I was not on any medication. Now it is not so bad as I am learning not be careful to listen to my body and to eat in a way that does not trigger migraine. Thanks for sharing and all the best.

  • Lisa Robin Benson moderator author
    3 years ago

    Hi Erin,
    I’m so sorry you went through it too. That sounds awful as well! Unfortunately some of us have to learn the hard way! Hope your feeling better now.
    -Lisa

  • ditzygal13
    3 years ago

    Hi! I went cold turkey once coming of off Tramadol. I became ill in Nov 2013 with severe head pain and left sided palsy of my face. The doctor thought it was shingles. After 2 weeks I had stiffness all down my left side and the pain in my head was still there and was worse. after a month the left sided weakness happened again. The pain was worse. I was prescribed Tramadol. I was taking 6 a day before the pain was under control. Over Xmas I wanted to drink so I decided to come of it and went cold turkey. I spent three days feeling sick, weak, shakey. I had trouble sleeping. I couldn’t eat.The pain came back and normal painkiller still had no effect so I started taking them again. I stayed on until the following April. It wasn’t until that April that I was diagnosed with Migraines. That i’s likely that it’s been migraines since Nov 2013.

  • Lisa Robin Benson moderator author
    3 years ago

    Hi Ditzygal13,

    I’m so sorry to hear about your withdrawal experience as well–that sounds scary! I’m glad you finally got the correct diagnosis of migraine. Have you found anything that helps you?
    -Lisa

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