Starting Nortriptyline

So update. tried Sodium valproate but only managed 2 days because of horrendous side effects. Now starting Nori…hoping it goes well. Just feel like giving up as I cant seem to find a drug that works and the ones that DO seem to help people wear off eventually…so seems to me I’m stuck with this for life

Hi Emily
You sound so disheartened having another med fail which is totally understandable. I tried several meds (including Nortriptyline (had to give that up because of racing heart). Switched to Prothiaden (another tricyclic) which has fortunately worked for me. I think it’s available in UK. The brand Prothiaden has been discontinued in Oz but now on Dothep which is the same drug.
A lot of people on the forum have found Nortriptyline to be the med that has helped them so hope it works for you.

Hi Emily

Sorry the valproate didn’t work out for you. Good luck with nori. I am on it, have seen a slight improvement in 6 weeks from how I was at the worst of it, still a long way to go. Yesterday was better than today so still lots of downs and a few ups. I found it made me a bit short of breath and jittery. I feel like that today but that may be because I am doing a bit more physically than I was and my muscles seem to go quite shaky and weak when I try to be more active. Ugh hate MAV!

Let us know how nori works out. If you have any questions about side effects or doses then message me x

I took Nori for a year and it really worked well for me, as I hope it does you!! Keep the faith, you will get well!! The only side effect I had was dry mouth and I had to take it in the morning as it caused insomnia!

Hi Emily,

I just wanted to wish you luck with the nori and say that I have been on it for about 10 weeks now and I am definitely improving. I’m in no way cured, but I am improving - a lot of folks on here find in beneficial. If you search some of my older posts I was asking the same question as you, but now I can positively say that I’m feeling better. Are you doing the diet too? My dr - Dr S is a great believer in it. Maybe worth a try?

Good luck x

Thanks for the posts guys :). I’m really hoping this one works for me. Am still on pizotifen 1.5mgs and have been since I got diagnosed as too scared to come off it until i’ve found another that works. So hopefully if this one does I can finally come off Piz and lose the 60 lbs it made me put on!!!

I am starting on 10mgs of Nori, is this a usual starting dose? And what is the average final dose? xx

I’ve cut out caffeine entirely but other than that I don’t know what the diet is really xx

Good luck Emily. If you’re med sensitive then maybe try half a tablet, so 5mg for a day or two first.

Dr Surenthiran says to cut out caffeine, cheese, red wine, citrus, chocolate and Dr Silver says just anything containing caffeine including chocolate and also painkillers. The Buchholz migraine book has a much more detailed list of foods to avoid which includes anything with MSG in it and loads of other things too x

My God this disease sucks!!! We can’t eat or drink basically anything!!! I have to say, we really are all soldiers! x

I started at 10mg and discontinued a yea later at 70mg! Give it time to work At smaller doses, I only bumped up as time went by and symptoms snuck in a bit!