I had a review telephone consultation with the National Migraine Centre last week. The consultant was excellent as always and I’d recommend the centre for anyone who needs more than they’re getting from their local services.
Apparently 2 consultations is usually enough to find a solution in most cases but this was our 4th and there’s still a long way to go. However I do feel confident in the consultant to get us at least further along the road than we are at the minute.
I now have an official diagnosis of Migraine Associated Vertigo as well as Chronic Migraine and he’s also looking into another headache condition that he thinks is separate to the migraines – something to do with ‘Trigeminal Autonomic Cephalgia’ that I don’t really understand but would explain the insane middle-of-the-night headaches that have introduced me to a whole new pain threshold and a whole new vocabulary I never even knew I knew but that some of the troubled teens I work with would certainly be proud of if they were there to witness it.
In terms of the migraines, because I’ve now tried three different preventative medications without much success (flunarizine, amitriptyline/nortriptyline and topiramate) we’re now eligible to try a new level of treatments. It feels like we’re playing some kind of crazy computer game and have just ‘unlocked the next level’, as if the last two years of medication trials and ridiculous side effect rollercoasters have just been about scoring enough points to move up to the next priority level. I know that’s not really how it works, but it feels like that sometimes and it’s not much fun.
So I’m now eligible to try botox (which can be considered for chronic migraine if the patient has been unresponsive to three or more preventative treatments). 36 injections of a toxic substance all over your scalp and neck. Nice. Apparently it’s quite excruciating and, as with everything, can have some pretty serious side effects, not to mention a sky-high fee or a ridiculously long waiting list on the NHS.
There are some other medications I can try, but we’re now on to the ones with worse side effects and lower succes rates.
Or I can try the GammaCore device, again very expensive and not available on the NHS. Its not got the most inspiring research evidence – in one study, out of the 4 people who trialled it 2 improved, 1 stayed the same and 1 couldn’t tolerate using the device at all. There’s some more research emerging but it’s a new invention so it’s early days as far as evidence is concerned. And it takes 6 months before you’ll know if it’s working. That’s a lot of investment and a big gamble.
I feel like I’m gambling with treatments all the time – investing huge amounts of time, effort and money into things that have no guaranteed return.
Even when something does work, or when research suggests there’s a strong chance it’ll be successful, ‘success’ is defined as a 50% reduction in the frequency and/or severity of migraines. Which is a vast improvement, but would still significantly restrict my life. Yes it would be an improvement, but I’m still coming to terms with the fact that there is no cure for this condition/disease/whatever you want to call it.
So that’s where we’re up to. Time to do some more research and make some decisions about what ‘game’ I want to play next. It’s just a shame the pause button seems to be broken…