u/bunsandbirbs

Personal experience taking nortriptyline for chronic headaches/IBS and weaning off

Hi everyone. I've been wanting to share my personal experience with nortriptyline and thought this might be the right place to do so. I hope my story can help both those considering taking it and deciding whether to come off it.

In 2021, I started experiencing chronic tension headaches. I tried a lot of different things to help with my symptoms, but nothing worked. Eventually my doctor recommended that I try nortriptyline as a prophylactic measure. Even though it would be for an off-label use and at a really low dose, I was extremely nervous to take it because of its classification as an antidepressant. I really didn't want to mess with my brain.

At the end of 2021, I got COVID, and shortly thereafter started experiencing intense stomach pain. My headaches were manageable to a certain extent, but the stomach pain was not. I tried many different things to abate the pain, but again, nothing seemed to work. At some point my doctor mentioned that nortriptyline can also help with IBS symptoms. My initial reaction was the same - I didn't want to mess with my brain. But I began to realize that my mental health was seriously declining because of these physical health problems, and perhaps nortriptyline could be a way to solve two problems at once (headaches and IBS) and prevent my mental health from suffering further.

I started with 10 mg, and eventually went up to 20 mg after a month or two. I thankfully did not experience any of the negative side effects that folks typically report (drowsiness, dry mouth, etc.), and I started to see significant improvements in my headaches and stomach pain. It wasn't perfect - I would still get flare ups - but the frequency and severity of them decreased drastically.

I stayed on 20 mg of nortriptyline for several years. It wasn't until November 2025 that I began to question whether I should stay on it. I had just read Unshrunk: A Story of Psychiatric Treatment Resistance by Laura Delano, and I began to rethink whether I needed to stay on this drug forever. Of course, my story was nothing like Delano's, but it was true that my neurologist(s) had never even mentioned the possibility of coming off nortriptyline. I decided then that I wanted to try to come off it and see how I felt.

When I discussed it with my neurologist, she suggested going down to 10 mg for a couple weeks and then completely coming off of it. This was not a surprise to me after reading Delano's book - coming off of these psychiatric drugs is not well understood and doctors often underestimate how severe withdrawal symptoms can be. However, Delano's withdrawal program struck me as rather extreme - it would've taken almost a year to come off of 20 mg on her gradual taper plan. I decided to carve my own path and decrease by 2 mg every 1-2 weeks, depending on how I felt. I was able to get a prescription for a liquid form so that I could measure out the precise amount each day (although it's important to note that this was a more expensive option).

I was shocked to feel pretty visceral physical symptoms after a decrease of just 2 mg to 18 mg. I felt brain zaps (which was a very weird feeling) and some head and stomach pain. However, after a few days these symptoms subsided, and I decided to proceed with my taper schedule. As I continued, I would shorten or lengthen the time between decreases as needed, but overall the process went quite smoothly, and I was amazed to find that I actually felt physically fine with less and less nortriptyline.

By mid-February, about 3 months later, I fully came off nortriptyline. This does not mean I am totally headache or stomach pain free. But nor was I when I was on nortriptyline. I cannot emphasize enough how helpful nortriptyline was for me - it truly saved me at one of the lowest points in my life. But I am also relieved that this was a temporary period of my life, and that I was able to come off it. Taking any medication has risks and benefits, and we still don't understand many of the long-term effects these drugs can have.

So my takeaway is this: if you're struggling and you think nortriptyline might help, definitely consider trying it. But if you've been on it for several years, consider whether you still really need it. Our bodies are more resilient than you might think.

Thanks for listening and lots of love <3

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u/bunsandbirbs — 2 days ago