Day 4 #mham16 @WHO says #Migraine is the 8th most disabling disease in the world. #MHAM #disabilaties

@WHO says #Migraine is the 8th most disabling disease in the world. #MHAM

The time I’ve spent in the last year really trying to get to know my migraines hasn’t been fun. I struggle to distinguish between the symptoms of iih and migraine. I’ve spoken to other sufferers of both (it seems common to have migraine as a co-morbid condition to the rarer IIH). Mainly, the consensus is that the migraine is pulsating and the IIH is more of a vice crush, ice pick and feeling hit by a bus whilst suffering with flu. And as it is also called pseudo tumour cerebri-it also mimics brain tumours; hence my mobility issues and the symptom that found me my diagnosis- pulsatile tinnitus. To be honest, I don’t think I’m having many migraines at the moment. But, I don’t really know for sure. 

However, we have, this year,  discovered that I definitely suffer from hormonal migraines and that when I have those I pass out. That’s pretty disabling isn’t it? The time I’m out isn’t for long, but the aftermath lasts for days. I lose the ability to walk properly (well, as I struggle with that anyway, I have to think back to before I was immobile and after I passed out then, I struggled to walk. I have to go to bed and I just cannot do anything. I live my life in the dark mostly anyway and I always have horrendous nausea, but this brings it on in full force and sometimes for what feels like days, but in truth is about half an hour, I spend retching over a bowl, shivering and shaking.

I’m having a break from these attacks at the moment though. The morphine has had an unusual side effect on my body (my GP even had to look it up); it’s stopped my monthly cycle. So I don’t have hormonal migraines at the moment, (well, at least not horrifically violent ones), but when I do; they are pretty disabling…says the person with the disability that requires a walker to get from her bed to the en-suite bathroom! 

Then, there has been the time spent getting to know so many of you, my fellow sufferers; those of you who can’t hold down a job, go out of the house or are even trapped in their bedrooms. It’s not fun being trapped in your bedroom or even  realisation, that there needs to be a complete shift in perception. So that when I think about the future of migraine life for my son; I can hope that there may be new treatments available, that employers will be more willing to make reasonable adjustments for those that need them. That maybe one day migraine won’t be used as an excuse to pull a sickie, it won’t be pushed to the back of the queue for funding and that it may one day even be understood by more than a minority that, MIGRAINE is classed as disabling as quadriplegia and active psychosis; and yes, you did read that right! 

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