Ahh mate...
you just described the last 6 years of my life
I know exactly what that daily hell is like, and my heart goes out to you because it's impossible to describe how difficult even basic interactions like even talking and listening can be - let alone what it does to your mental health being so isolated when no-one understands or has any useful advice.
All I can say is: there
is hope.
I've gone from being unable to listen to music/read/function to
almost normality.
Best advice I ever had (from r/migraines on reddit) was to keep trying different things, tick them off one by one (here's their checklist if you haven't seen it:
https://docs.google.com/spreadsheets...7S0/edit#gid=2), and eventually you will find the right combination that pulls you free. Apart from the Pizotifen I also found the Drs and neurologists worse than useless so I recommend checking out that sub if and when you can because I got all my best tips from there.
In case it's of any help here's what eventually worked for me:
Diet:
Obviously everyone's triggers are different, but I got this book called 'the migraine miracle'. Happy to send it to you actually. Basically it just recommends going on a paleo diet and cutting out all/most sugar and carbs. Coffee and alcohol are bad for me too.
I would class diet and the Pizotifen as the crucial combination that really turned the tide for me. I've never been a healthy eater and of course feeling ****ing dreadful all the time made me make even worse dietary choices.
But eventually I was able to turn it around in small steps. My diet now is basically chicken and veg soup, chicken fajitas (these are the best, because you can smuggle in all kinds of healthy stuff in a tasty wrap), eggs, cheese and other meat/veg combos like mince and sausages etc. You probably don't have to go that strict - depending on how good your normal diet is - and certainly not all at once, but it was only when I started to cut out the carbs and junk that the intensity really started going down for me.
I used to keep a tally of the strength of my attacks and I dropped from 8/10s to 2/10s since adopting dietary changes.
Meds:
Yeah big shame the Pizotifen isn't working out for you. But what dose are you on mind?
I started on some tiny dose that was totally ineffective and had to beg to go higher (think you can go up to 4.5mg/day, can't remember how far I went but it was high). I'm down to 1.5mg now. I was on topiramate for a few months and it was worse than the migraines tbh - horrible horrible drug.
I know you said you take other things and you have to be careful but I can't recommend cannabis enough - if it's at all possible. Clearly if you have any predisposition to schizophrenia of course this a bad idea. But, if not, marijuana is by far my favourite acute medicine and has easily done far more for me than any pharmaceutical ever did. And I include opioids in that comparison.
I haven't tried them but I've also read very good things about Aimovig injections too.
Electronics:
- Cefaly device
Seen these?
Electronic neurostimulator thing you stick on your forehead, kind of like a TENS machine for migraines. Bit pricey but so so worth it. They do a 60 day trial period so if it doesn't work you can get a full refund.
First time I put this on I thought someone was firing a drill through my skull but after you get used to it it's pretty amazing. It practically cured me for about two weeks although gradually the pain returned. But still very useful after that though, as a preventative and an acute to bung on when an attack is imminent. Can't recommend it enough.
(Note: replacement patches are annoyingly costly but there's a neat trick where you can buy a tube of 'Tac gel' from Amazon and just use that to spread a very thin layer of goo over old patches and it works just as good and you save $$$)
- BenQ eye-care monitor.
Seemed to be one of the better monitors for migraine users; has a really nice low brightness level.
I also use the (free) Pangolin screen brightness software (here:
https://www.pangobright.com/download.htm) that lets you lower the glare even more. This was one of the first things I got and it allowed me to finally start using the web to seek out my cure.
- Tinted glasses
Do you wear glasses?
I got dark tinted and anti-glare coated glasses that weren't too much more expensive than my usual prescription but also excellent and I wear them all the time.
********
That's all I can think of right now but please do feel free to PM me with any questions or even if you just need to chat or vent.
I know how absolutely ****ing horrible it is to have permanent migraines and I'll gladly do what I can to help you get out of this. What's important I think is that you know there
is a solution out there somewhere for you and it just needs to be found.
And it kinda goes without saying but don't be too hard on yourself either. This condition is
extremely mentally and physically taxing and hard to deal with so remember to give yourself a break as much as possible.
Take it easy man. Ping me whenever if you want to chat