Has anyone had success with titrating back down?

Not necessarily total elimination. Specifically with either Amitriptyline or Nori.

And what lead you to decide to try it?

I’m wondering if one day I’ll be able to try it too …

I was taking 90mg of Nort for approx one year then my consultant asked me to reduce meds by 10mg every 4 to 6 weeks. I reduced down and managed to get to 40mg but then had a relapse and my consultant thought that it was because I reduced down too quickly. Some of the old symptoms came back so I ended up increasing my dose to 70mg to start feeling how I felt at 90mg. Then a couple of weeks ago I had another relapse and Ive now gone back up to 80mg. The last few months have been especially hard as I have been living a relatively normal live or as normal as you can be with MAV. Im sure my case is not a representation of what happens when you decrease meds and you will read more successful stories of people coming off prescribed meds. I am going to follow the diet more strictly and also start taking magnesium and feverfew as suggested by quite a few people on here.

CoQ10 is also extremely helpful in my case (the kaneka brand of it). For me I take 400mg of it daily and it helps me out along with magnesium glycinate and feverfew. B2 is also recommended by many including myself but it doesnt seem as important as the others for me personally xx

Thanks, will give that a go too! Im determined to knock these symptoms on the head!

Hey Rainbow! Yeah it’s hit or miss with all this stuff. I found a combo that works for me (800mg magnesium glycinate daily, 400mg CoQ10, sometimes 2 capsules of standardized feverfew if I’m having an off day- one in the morning one in the evening). I’m not on any meds, just watch my diet (citric acid, MSG, tyramine all bad for me!) I hope you feel all better soon :slight_smile: Primrose oil too is something to be careful about. I’ve been taking it for the past few days for hormones but it makes me feel a little more head-achy for whatever reason. xx

Thanks for that. You are doing brilliantly to say ur not taking any prescribed meds. There is hope! How long have you had this condition? I am much better than when I first started getting symptoms 3 years ago but Ive had a couple of recent relapses reminding me that it 's still very much there!!

My doctor wants me to start decreasing the nort in Jan. I’ve to decrease 5-10 mg every 4-6 weeks. If symptoms return I’ve to go back to the last dose when I felt ok. He says I won’t know if I’m ‘better’ and the brain has healed until I start coming off of it. The idea is that by next summer I will be off the meds and starting to try to reintroduce the food. We will see…

Thats great!

I’d love to get there. I know my ear is still too unstable though at moment. How are your ears?

My ears are ok. In the past when I’ve had intense vertigo episodes I’d get a whooshing through my left ear.I sometimes get slight and fleeting ringing in my ears. I don’t know if that’s normal though (as in people without these issues). My doc maintains it’s not my ears at all, just the brain. Who knows?

Well migraines definitely are. Good to hear your ears sound good. Keep us posted on progress!