It’s been months since I’ve visited this website; I posted in March 2017 when I was at one of my worst points in MAV:
When I was feeling low, one of the things that helped the most was reading success stories on here, and it often worried and frustrated me when I looked through the profiles of people who had stopped posting and found no follow-up describing whether their symptoms were still affecting them. For that reason, I thought I’d post my own.
Things are so much better. When I was first diagnosed with MAV, I was experiencing symptoms nearly 24/7. After several months I’d convinced myself that my life would never be the same again. I wish I could go back in time and tell myself that things were going to improve tremendously.
What helped? For me, the two biggest things that have helped me recover are 70mg nortiptyline every night and being extremely careful with my sleep. I only realised how much my MAV was connected to my sleep patterns after I started using an online migraine tracker (MigrainePal). It turns out if I get half an hour less (or more) sleep than I do usually, or if I sleep the same amount but shift it back or forward by half an hour, it can be sufficient to give me low-level symptoms. This might not sound like recovery to you all, and it does lead to a slightly more restricted life, but for me having to have a consistent sleep schedule is a small price to pay for going from 24/7 MAV to being symptom-free most of the time.
I would strongly recommend Dr Surenthiran as a doctor. After months of waiting for NHS treatment, I eventually decided that putting your life on hold (and feeling severely depressed and anxious, as I did) for the sake of saving a few hundred pounds is simply not worth it, and I paid to see him privately. Of course not everyone is able to do this, but I’d recommend it if you have the means.
I hope this provides some hope for anyone who has been newly diagnosed or is struggling. Despite having to manage this condition, I left university last year with a first-class degree, and I’m returning to university next year to study medicine and (hopefully!) specialise in neurology. Please don’t let this condition take away your sense of hope - most people with MAV can and do get better. xx