I am in the last week of tapering,last night I took 1/4 of a 25 mg tablet.This morning the earth shifted and thought I was going to spin but didn’t.Started sweating,etc,took Sedative and continued working.
Is this normal? Maybe a week or so of symptoms coming back? Or should I talk to my doc about staying on it?
Do some people stay on it indefinitely?
Was hoping to drop the weight I have gained but will go back if it keeps the mav at bay.I have been taking it since April and have been doing pretty well on it.
Any imput appreciated.Thanks!
Hi James,
Not the same drugs, but I had the same concerns coming off pizotifen and propranolol. The pizotifen increased my appetite a lot, and I put on some weight, which I was keen to lose once my condition was stable. I gradually cut it down, but I was only on 1mg (2 x 0.5mg tablets) and the tablets were hard to cut down successfully, so I went to 0.5mg, then I took that every other day before stopping it altogether. I started getting some odd feelings of false motion (e.g. sitting still but suddenly feeling like I was falling) when I cut the dose to 0.5mg, so I went back up to 1mg. However, I gave it another go a few weeks later, and managed to cut it out. I had a few days of feeling slightly off balance, but then it stopped. I really don’t know if the false motion feelings I experienced the first time I tried to stop were to do with the drug dosage being reduced or whether it was just chance and I would have had the same happen had I still been on 1mg. My consultant has said it’s quite normal for people without MAV or inner ear disorders to occasionally get feelings like that. The problem is that I can’t remember what I like pre-MAV, so I find it hard to keep things in perspective and not panic when I occasionally have moments like that.
Anyway, I’ve been without pizo for a few months now and my symptoms haven’t returned. I very occasionally feel slightly off balance if I am very stressed or under the weather (e.g. I’ve had a bit of a cold the last week), but I suspect I probably felt like this in pre-MAV days but didn’t really attribute it in the same way.
The other good news is that my weight has returned to normal.
I’ve just cut out the propranolol as well, as I thought it was time to test the water without any medication (although I’ve always thought the pizo was the main thing that worked for me, as my headaches also reduced in frequency when I was on that, but just on propranolol they’ve gone back to normal 
). Entirely different issues with cutting this one out. Although I cut it down really slowly and gradually, once I stopped altogether I had some palpitiations and my resting pulse is still rather high compared to normal, but I am starting to get past this, and have felt ok today.
Good luck to you in stopping your medication. Hopefully it will work out well for you.
Hey Beechleaf,
Thanks for sharing your experience.I have felt this coming for the last 2 days,have had really loud tinnitus.Like you said don’t know if this would have happened had I been on the drug on not.Am hoping my brain will settle down without drugs.I started sweating, as I think you know the panic started to kick in,I was in the middle of teaching a class.Am proud of myself that I made it through.Did sit on a chair for the remainder of the class.
I am glad that you are doing well and I hope to be soon too!
Thanks!
HI James
I do seem to read that once people stop their medications, they realize that they were indeed helping. I think Nortriptyline has less side effects than AMi, which is why more doctors rx it. But I know it can be a weight issue for some as well.
Sometimes you can just take a very low dose, which helps prevent side effects, but gives your brain a little something extra. 10mg is a dose that is effective for migraine with both Nort and AMi for many people…i say that just in case you start feeling worse.
Kelley
Thanks Kelley,
I’m going to see how I feel and will contact my neuro about a possible maintenance dose.