It has been a very long time since I posted and it is all because of amitriptyline, believe it or not.
Takeaway: Do not let anyone you know take amitriptyline as a migraine prophylactic. Do not assume your family doctor understands the risks of longterm amitriptyline use.
When I was eight, I began having headaches. At 42, the headaches I endured several times a week were diagnosed as migraines. I was put on amitriptyline as a prophylactic. The dose was 20mg. Even with that addition, I experienced an average of 8 - 10 migraines a month but at least had therapeutic medication to take by that time and now live relatively pain free (wrt migraines). Over the years, however, the amitriptyline was slowly raised to 175 mg/day as a convenient antidepressant.
In June 2020, I had my first appointment with Dr. Sandra Black of Sunnybrook hospital, to assess my cognitive losses. During that visit, she identified the amitriptyline as a potential issue related to those losses and recommended I taper off it. I started to do so immediately. It took eighteen months. I took my last pills the first week of November 2021. I've been off work on longterm disability for the last fifteen months as a result of the process.
Withdrawal from amitriptyline was gruelling. My depression as the result of the withdrawal was, at times, life-threatening. The agoraphobia of my early years descended like a cage. Despite my desire not to replace the amitriptyline with something else, I have had to do that and have only reached, in these past couple of weeks, a dosage (150mg venlafaxine) that seems to work and leaves me feeling well enough to imagine a future . I've even gone outside by myself a few times.
The VERY good news is that my cognitive health began improving significantly about a year or so into the withdrawal; I'm not sure when I first noticed it. I have been diligent with the Bredesen protocol (except for seriously exercising and staying keto) throughout and continue to be vigilant (enjoying my dark chocolate right now!) but I credit the reduction in the amitriptyline with the reversal of many of the significant issues I was experiencing. I still lose words but much more rarely. I lose small bits of time, mostly realizing I've done something and having no recollection of doing it. If I alter a routine - taking my pills in the morning or making coffee - I can get mixed up and not be able to find things or remember if I've done them. But my ability to think, write, read, and remember has improved greatly.
I put the takeaway at the top so someone doesn't have to read this whole story but here is another reason why it is important. I was shocked when my 19 year-old niece told me about her massive headaches which she, too, had had since she was eight (I can't tell you how angry I am at her mom, my sister, for not having them addressed, but that is another story...). She knew I had headaches and reached out for some suggestions. We got her to a neurologist who immediately put her on amitriptyline with no exploration of her genetic make-up or family history of dementia. I was stunned. Yes, it is a low dose, but she is nineteen and will likely be on some kind of prophylactic for the rest of her life. I told her about my concerns and have left it with her to decide what to do. If a neurologist ignores the warnings related to amitriptyline, how much easier will it be for an individual to end up prescribed a long course of amitriptyline as an antidepressant by a family physician ("It's been around a long time; it's safe...") and risk significant cognitive loss? My experience suggests that the loss may be reversible, but it may just be that the Bredesen protocol is what is reversing it. I simply don't know.
Thanks for being here. Spread the news about amitriptyline among your family and friends. It isn't just those of us afflicted with cognitive issues stemming from ApoE4 who are at risk.
A sunny day. I might even go for a walk.
A primer for newbies and old pros alike.
2 posts • Page 1 of 1
Thanks so much for your post! I've been on 5mg of amitriptyline for a few months. I cut a 10 mg pill in half. It was prescribed for debilitating pain from Interstitial Cystitis. It has almost eliminated all bladder pain, reduced my horrible migraines, and has enabled me to begin exercising and socializing again. I've even been able to eat more and my BMI went from 17 to a healthier 18.5. Truthfully, it's been life changing, BUT I guess I need to give it lots of thought! I truly appreciate that you shared your experience with all of us!