The big day was upon me, I finally get to see Prof. Goadsby, from what I can work out this guy is the God of the migraine world. There has been a long old wait for this appointment, I’m not much of a planner and generally don’t believe in preparation for much! However, this was different, I was armed with reams of notes, a potted history of my year, an audit of my ever growing pharmacy and a symptom list that was depressingly long. I spend my days burying my symptoms as far away from consciousness as humanly possible. The exercise of bringing this all back and detailing all of this was pretty painful. I don’t often dwell in the unfortunate nature of this, well whatever this is, but today was a day to allow myself a little moment.
Anyway, I was ready, I was called in for my assessment with the registrar. I’ve got used to this dance, you HAVE to ensure you bamboozle them enough to allow you to see the big dog. As a seasoned professional this usually takes me 5 minutes, this one was a tough cookie. She was used to seeing the worst of the worst, you don’t get close to the Prof. without some serious suffering under your belt. But I got the notes out and got to whining, it took me over a hour to regale the whole ordeal. But I was through, I qualified to see the Prof. And there it was the elation of being so screwed you are worthy of an audience with the international specialist! Wahoo!
As a refresher my symptoms are as follows …
Headache – all of the time, 100% of it, an unrelenting headache. No matter how many times I have explained this to consultant after consultant they have refused to acknowledge it, the closest I have managed is ‘this patient suffers almost daily headaches’
Vertigo – from a constant feeling of one too many shandys, escalating to full room spin
Visual auras – these come in the form of glittery vision, like being in the starting credits of Star Trek, black spots and tunnel vision
Naseau – I spent at least one full year being sick every day, this is pretty much under control now but I do feel sick the majority of the time
Hallucinations – now diagnosed as ‘Alice in Wonderland Syndrome’. But in layman’s terms I feel like I am a giant and other things are tiny OR I am tiny and everything else is enormous, jazzy huh!
Brain fog – migraine suffers will understand this, for the rest of you just imagine trying to work though a off the richter, gale force hangover
Nystagmus – uncontrollable eye movements
Numbess – I now haven’t felt the right hand side of my face for about 9 months on and off, sometimes this expands down to my arm and leg
They are the main day to day contenders and then in acute periods of migraines I also get the added joys of: zero control of my body temperature; a whole host of weird and wonderful hallucinations; weakness and lack of coordination of my right hand side; black outs and loss of speech.
So I have finally won an audience with this guy and the registrar hits him with my case. He makes all the right noises, full of hmm’s, and reallys?! I definitely had his interest. He ever reassured me that I really have had a terrible time of it, which was greatly appreciated. He assured me this was rare and I had definitely got the unfortunate end of a really shitty stick. All wonderful news. He paused and then hit me with it… ‘You’ve got New Daily Persistant Headache and Chronic Migraine with Brain Stem Aura.’ Fantastic, so what the well does this all mean and why the hell has it happened to me!?
Turns out you can either get migraines or you can’t, you brain is either wired that way or it isn’t. Unfortunately mine is, but even more unfortunately I got a ‘flu-like’ illness at the start of January and this triggered a migraine and my brain now can’t turn this off. And just for the nail in the coffin it might not ever go away. The Prof. says he has seen it go away as quickly as it came on but I shouldn’t hold my breath, at least not for the next 3 years!
But a cure isn’t the only root, this guy, along with walking a fine line between insanity and genius, is all about the therapy. So the options are D.H.E. 45 (dihydroergotamine mesylate) infusions, this means periods of 5 days in hospital every 3-6 months OR the new treatment TMS (Transcranial magnetic stimulation). This is the preferred option and from what I can work out is some sort of space age gadget that I wear on my head that sends signals into my brain to try and reprogramme my brain and convince it to not have a migraine. The Prof. claims this is really effective and especially for people that suffer from auras, which I do. So this is our next POA! He claims, with this new therapy, including my current concoction of drugs (flunarazine, amitryptarlyn and riboflavin) we can manage it so well that I might not even notice I have got it. Well wouldn’t that be bloody fantastic, watch.this.space!!