Hi, I was diagnosed with vestibular migraine and PPPD between 2020 and 2021 and continue to suffer. Just wanted to connect with others suffering from this and to get advice.
welcome. i’ve only been here for a few weeks but have found a lot of stuff on here that’s helpful. I particularly recommend using the search bar. There’s over a decade of posts and information about VM/MAV
I used this site to find a specialist - Dr Surenthiran - and he helped me enormously. Under his care I started on pizotifen and have been on it for 4 years. I am so much better I have almost forgotten this horrible condition, but I have to keep taking the meds to stop it coming back. You can get better and you will. Find a neurologist or neuro otologist specialising in migraine dizziness, and go from there.
Hi, thank you so much for getting in touch. I have just spoken to Dr. S’s secretary and will try to see him for a consultation. I have seen other ENT and neurologists but most seemed indifferent or cold. Also, since most want to put me on medication I want a doctor who I feel is really going to follow up and care for me. I have been reluctant to take any medication as I know it works for some and doesn’t work for others, and because I am still able to ‘manage’ my PPPD and MAV (though it is becoming increasingly difficult and is draining me mentally and emotionally), I have been afraid to go on any drugs. I have tried so many alternative treatments hoping they might be the key to healing but I still suffer. So, I wonder now if I need to really consider taking meds. I am nervous I will be on them for ever but my quality of life is declining and it’s starting to have a real impact on my relationships. Have the meds helped you? Thank you so much for getting in touch and for sharing your story and your recommendation of Dr. S. We shall see if he can help. Thank you.
Meds 100% helped me. Pizotifen was the 4th one I tried. The others didn’t work or had side effects. But they were prescribed by GP or non specialist neurologists.
Dr S prescribed pizotifen straight away.
It’s a case of trial and error. Some meds work for some people, others need different ones.
Good luck - Dr S is very good
Can you please edit with the pencil icon tool rather than create a new post? I’ve noticed you’ve done this at least twice recently. I’ve corrected your post on this occasion and deleted your additional post. Many thanks.