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…
Well Naomi, what can I say, are you reverting to a troubled teenager, and yet have access to the 18+ level games. Thats what every teenager dreamed about. Sad that the latter is not about sex, drugs, and rock and roll, but pain.
When reading about the various things that you could try, it seems that they are not without hope, but many seem to be offering diminishing returns for a high outlay. Not that in any way I want to discourage you but neither do I want to develop a false hope.
You may well have got to know by now that a lot of what I may say is of little or no worth, or simply stating the obvious, but just now and again I have been known to strike gold. I just wish I knew how to discern one from the other, and how to keep my mouth shut when I am talking rubbish!
I did have one crazy thought while reading your blog, and to be honest I don’t remember much about them, except that they were relatively cheep. Have you tried a “ten’s machine” I think that the right name. They were a device that was recommend that could be used as a form of pain relief for a range of conditions including pregnancy.
Whether it would work on the head I have no idea, and it may not practical for daytime use, or if it can be used on your kind of pain, but….. If nothing else it’s one more thing to dismiss.
I don’t know if you know if you can access one to try,but it was a thought.
I hesitate to say but just wonder if the eventual solution will prove in the end to be relatively simple rather than complex. The problem and million dollar question is how will you know, and for this I can offer no clues.
Clearly you are right, in that you are playing a very cruel game, but you have an extra player on your side, God, and this alters so much and in so many ways. As someone once put on of my posts, KOKO.