your description of your experience in the first 19 months of your condition mirrors mine. Prior to the onset of my MAV, I had never as much as suffered from a headache I feel a bit embarrassed to say, having seen such a long history of suffering from many of our board members.
Every symptom I had was chronic; extreme motion intollerance (couldn’t even turn my head), vertigo, dizziness, nausea, photophobia, phonophobia, ear aches, blocked/fullness in ears, brain fog, which lead or was triggered by MAV - to anxiety and depression. They were all ‘off the chart’, hospitals & then housebound, I thought as though the bottom had fallen out of my world. Crying myself to sleep was not unusual.
Thankfully, diagnosed with MAV very soon after BIG CRASH (approx 3mths) and taking various migraine meds ever since. Trial and error really, am now improved to approx 60-70% at best and feel positive most days. Last week’s neuro’s visit went well, he was pleased to increase my 4mthly appointments to 6mths, so I was very pleased too. Funny you should mention the evolving part of your condition, because my photophobia became worse particularly during the day only a few months ago. I have often wondered how this condition might evolve, I’ve had most of the symptoms on this MAV board, but not all of them and have wondered whether this was just luck or just time, who knows really
I’ve also found that my key triggers are anxiety/stress so I’ve just started taking a tricyclic antidepressant Dothep to suppress those symptoms as well as Klonopin (which I’ve increased recently with very good effects). Sleep is also an important issue, I don’t go out at night any more because I’ve found it too much, it’s amazing just how you slowly without noticing too much, change your lifestyle to reflect your new limitations and then somehow that then becomes the ‘norm’. I don’t have a realistic comparison of how well I’m doing because I no longer work as I think it might make me too sick and my lifestyle is changed dramatically.
I haven’t had any ‘relapses’ as such in the past 6 months but had quite a few last year which could last for 6-8 weeks at a time. So I’m hoping that the meds are doing their job. I think I’m going to be on some form of med for the forseeable future, but have absolutely no problem with that one, because the alternative is not worth thinking about.
I’m sorry to hear that you’ve been suffering once again, what a bummer about the propranolol not acting as effectively as before, I hope you have a great neuro who can help you through the tough times.
— Begin quote from “Hannah”
I am really looking for a drug that might allow me to live a normal (ish) life - not looking for any miracles - without constantly fearing relapse and most importantly that allows me to tolerate sunlight.
— End quote
You’re spot on about that one Hannah, that’s why I’m now on benzo’s and anti-depressants, just don’t know what med can help with the sunlight situation.
Thanks for telling your story, wishing you better health