At last I can write a celebratory post 🙂
The combination of topiramate and nortriptyline seems to be working to some extent and there’s finally been a bit of progress.
Back in January we set a bold target of having less than 65% of the week on red/severe and have managed to achieve that for 4 different weeks so far which is amazing.
I’ve been able to leave the house occasionally and even managed a short stay with friends thanks to an excellent travel buddy and some very understanding hosts – thank you!
The gammaCore rep has agreed a free trial of the device so we can see if it will work before we commit financially so we’ve decided to try this as the next treatment option, especially as it can be used alongside the things that are working already.
So things are looking up and it definitely feels like we’re moving in the right direction.
Thanks to everyone who’s been part of the journey so far – friends, family and those I’ve met online. I know there’s still a long way to go but I’ve really appreciated your kindness and support along the way.