Just wanted to share the good news about the progress I have made on Pitzotifen. I have struggled with various symptoms for 7.5 years and only diagnosed about 2 months ago with Vestibular Migraine. This is the first drug I have ever tried and I started on 0.5mg, progressing the dose every 2 weeks and now on 2mg a day. I am 90% better and so so happy that my life is almost back to normal. I have no plans to increase the dose as would prefer to just tolerate the minimal symptoms I have now. I have also been cutting out some of the foods on the migraine diet, namely caffeine and msg. I have been walking every day for just over a week also for about 45 minutes which I think is helping also.
I saw a naturopath last week and have sent a section of my hair off to be analysed so looking forward to receiving those results as I’m sure they will be interesting.
One thing I would say to people potentially trying Pitzotifen is to not be put off by possible side effects. I was a bit anxious at first as I really do not like taking any type of medication. The neurologist told me the main side effects are tiredness and weight gain. I noticed a slight tiredness in the beginning and also felt a bit more hungry but I just didn’t give into that hunger and after a couple of weeks the side effects have totally passed. I know this is not the case for everyone but I do think it’s important not to be looking for side effects that might not even appear in you, as we are all so different.
Not sure how long I will have to be on this medication but planning to introduce Vit B2 soon so may drop back down to 1.5mg at that time and see how I go from there.
that is awesome news!!! how long have u been on the drug total for? did u have any unsteadiness walking and did the drug help that? hope things keep going up and up!
I’ve been taking it for almost 8 weeks. I didn’t have unsteadiness as a major problem however about 9 weeks ago I actually fell over after bending to pick something up. Directly after this it felt like the whole world was spinning and I literally could not move for about 4 hours. I had never experienced anything as bad as this before. It took a few days to get back to what I would say was about 60% well and that was before the medication. I have had numerous symptoms for years now (mainly visual disturbances, extremely heavy eyes and a feeling of pressure in my head along with a feeling of falling) and believed I had uncompensated labyrinthitis. I basically just learned to live with the ongoing symptoms, no medication although did do VRT occasionally. After that awful attack 9 weeks ago I saw a neurologist and pretty quickly he diagnosed VM. I had an MRI and this showed up something they want to have a closer look at so just waiting for the results of the 2nd MRI… hopefully all will be well
There are still moments most days when I have that ‘falling’ feeling in my head but I can manage that and really don’t wish to increase the meds any further. Happy to stay at 2mg and see how I go over the next few weeks.
Do you know much about this drug? I’m not keen to be on it long term incase there are downsides to that… I suppose I will just have to discuss it with the neurologist the next time we meet.
