Sorry for taking a little while to get back to you. I’ve been on nortriptyline for a year and 3 months. I started on amitriptyline 10mg but switched to nortiptyline after finding out it’s less sedating. It’s never stopped working for me, it’s just that the lower doses only had incremental benefits. I worked my way up to around 30/40mg convinced that it wasn’t doing anything for me, and it’s taken 70mg to stop the symptoms entirely (provided I’m on top of my sleep).
Dr Surenthiran says that people respond to it in different ways: some get incremental benefits whilst for others, reaching a certain dose can be like flicking an ‘off’ switch on the condition. For me, I’d say it’s been the former. I can continue to increase the dose all the way up to the maximum dose of 150mg if needs be, and Dr Surenthiran’s next step would be to add an additional medication (gabapentin). The most important thing is to stick with a medication until you’re sure it’s not working for you. When I was on 10mg nortriptyline and it was doing nothing for me, I felt extremely frustrated and wanted to move on to something else. Waiting several months to titrate up was the last thing I wanted to do. But if I hadn’t, I would never have discovered how beneficial it can be. Obviously side effects can be a barrier to this, but in my experience side effects are worse at the beginning and it’s worth seeing if you can ride them out.
I should emphasise that I think lifestyle changes played as a big a role as medication in my recovery. For me, this is particularly true of sleep, but also avoiding alcohol and caffeine, limiting my stress as much as possible and exercising regularly.
Dr Surenthiran uses a simplified analogy of the brain being ‘wounded’ by MAV, and medication and lifestyle improvements being the factors that will help that wound to heal.The ultimate goal for me is to come off my medication and be free of MAV. Dr Surenthiran believes this is entirely possible. In fact, he says he’s never had a patient who, long-term, he hasn’t taken off their medication. How amazing is that? It just goes to show that (as much as this forum was an absolute lifeline for me at my lowest points and also a goldmine of useful information) the stories that you see on here are only a small part of the bigger picture, and many represent the stories of people (like my own story) who are at the beginning of their awful MAV journey or have (unjustly) been denied rapid and/or appropriate treatment.