There are lots of myths and misconceptions about Migraine. Which one tops your list as the biggest and most common? What can we do to get the truth out there?
I think the one that bothers me the most is the assumption people have that migraines cannot be chronic or last days.
They think something is wrong With ME. That I am doing something wrong. Or something has gone wrong with me with what I am doing or not doing to be this strange case of having so many migraines. It is quite offensive really.
People do not see migraines as a disease at all anyway. Just a ‘bad headache’. And when you mention some of the symptoms they are astonished by it. Vertigo? With a Migraine? You sure?
They see them as a headache, which right there is wrong because the headache is but one possible symptom of a migraine.
People have this idea that a migraine has to have a visual aura, nausea, and a headache and that it does not last longer than a day. And that for some reason things like ‘migraine strength Advil’ will do the trick. Well, I do often get a visual aura (a prolonged visual aura actually) and sometimes I get nasty nausea and 99% of the time I get the headache (but have had a few silent migraines in my time). Advil doesn’t cut it unfortunately and yes those commercials annoy the hell out of me because I am afraid of the light.
But I do get chronic migraines and they are a disease.
And it is not some rare fluke of nature that this is the case. Other people also get chronic migraines. And no, we are not to blame for this, so stop implying it is something I’m doing or not doing. That really pisses me off. Anyway, I explain to people the various reasons research has suggested why migraines might go from episodic to chronic. I explain that it is by no means rare. And I also explain all the varied neurological symptoms associated with the aura phase of a migraine as well as an actual migraine itself to show it is not all about the pain or nausea…. there can be a lot more factors that are debilitating.
I also point out that it is a serious matter when migraines persist for longer than three days… even though I ignore it all too often because I have to go to work rather than go to the ER, and the ER doesn’t provide the service I would need anyway so I don’t often bother… that doesn’t mean it isn’t a dangerous migraine state to be in. I should know given my suicide attempt during a long status migraine and then more recently my nerve damage in my hands. Not a laughing matter. And it isn’t a laughing matter when someone has a stroke from a migraine either. So it isn’t just a damned headache.
I think we can bring awareness to every conversation we have with people. Sometimes people just don’t get it so they say idiotic things and we just have to set them right. Usually, when I inform people of the reality of my existence they get it a little more. Sometimes they are shocked by the reality of it, but in the end, people do grasp the concept of pain. If you say you are always in pain, no matter what else, at least they can grasp that part… they just might not quite get all the weird warpy fun house neurological stuff, but then who would unless they actually experienced their brain playing tricks on them?
Nevertheless, when I have to the point conversations with people about migraines, in the end, they grasp migraines are complex entities. Because trust me, I have a lot of weird symptoms. So if they are chatting with me it could be about vertigo, to hearing loss, to prolonged visual snow, to passing out, to nerve damage, to horrific ER experiences, AIWS… the list goes on. And if they catch me pre-migraine… I may be hypomanic mode and super chatty and then I may, well, overshare and they may learn a whole lot about migraines. Or I may be pre-migraine and brain dead and be unable to form a sentence or complete words or using the wrong words and that rather explains a lot right there. I’m a freaking walking awareness campaign.