can anyone who is on this drug tell me how long it was before they noticed and improvement, and when you did was it gradual or did you syddenly feel significantly better one day?

My 11 yr old daughter has been on it for 5 weeks with no improvement, 2 weeks at 0.5 and 3 weeks at 1mg. Am wondering if we should have seen some improvement by now - the headaches and dizzyness are still continuous. She has also been on the diet for 5 weeks.

Many thanks

Hi there,

I’ve been taking it for about 6 months now (I think!). I would say it took at least around 8 weeks or so before I started to feel any major improvement. I started with 0.5mg and kept increasing by 0.5mg every 2 weeks - I’m now on 2mg (4 tablets) a day. I’m about 85% well which is great considering there was days I felt absolutely awful. The neuro said I could go right up to 4mg if needed but I don’t want to risk anymore side effects as I have had some water retention with it.

It can take a while for the increased dose to work which is why GP’s normally say try a certain dose for at least a couple of weeks before increasing again. Maybe have a chat again with the GP and see when your daughter can increase (or if she can, as I presume with it being a child that max dosage will be different).

I hope she starts to get some relief soon. It must be awful for a child to go through this - and for you too.

Take care.


PS. I meant to say the improvement was gradual too. First thing to improve was my heavy heavy eyes - they went back to normal, then I stopped having visual disturbances and finally the ‘falling’ feeling in my head started to reduce. I still have days where I feel like there is too much noise in my head, like hundreds of little cars running around (best way I can explain it!).