Friday, June 01, 2012

National Migraine Awareness Month #1: First for the First

Anyone still reading this blog (hello? is there anybody out there?) will know it has been a while since I've posted. So long, in fact, that I have never posted about my dealings with migraine, something that seems to have started for me a few months after a car wreck back in 2009.

I guess I had sort of lost interest in writing here. And also things, and, you know, stuff.

But I just read that the theme of this year's National Migraine Awareness Month (NMAM) is "help make migraines visible!" and the group over at "Fighting Headache Disorders" has issued a blogging challenge for the month. So I figure, what better way to make migraine visible than on a blog with no readers?

So I'll post this month about migraine. Probably not every day, because not every day's challenge speaks to me, and I don't know if I want to write about migraine for 30 days in a row. Living with chronic migraine is enough: do I have to talk about it every day?

But all for the cause.

Today's prompt is to write about your first migraine--what it felt like, if you knew what it was, what you did, how you felt.

This is an interesting question in itself.

When I started experiencing migraine--and I use that word in the singular with no article, for a reason I'll explain in a second--I had no idea what it was. My first experience was hardly what seems like classic migraine. I had no headache. I had no visual distortion. I had no nausea, light-sensitivity, sound-sensitivity--none of the things I had heard go with migraine.

Instead, I had these strange sensations in my arms, legs, and face, like I was losing feeling in one half of my body. Or sometimes it would be just my legs. Or a strange cold sensation on the inside of both knees.

I had had some low back pain at the time, so I was in physical therapy for that. When I would do the little strengthening exercises, suddenly my arms would shake uncontrollably, or I felt unable to lift something I should have been able to lift.

To be honest with you, I had no idea what was happening. Was this the product of my accident? Was something wrong with my neck? Did I have MS, and were these the fist signs?

Now I am reasonably sure that these things are part of migraine: I often have numbness and tingling on the right side of my body during an attack. Other days, I just have the numbness but no headache. And, I'm sorry to say, exercise is one of my most reliable triggers, which means that my beloved swimming now is able to cause me tremendous pain.

I'll write more about these things as the week goes on, but before I wind up for today, the explanation I promised you about terminology: as I said, I don't tend to call my experiences "migraines," or "a migraine"--as in, "I'm having a migraine" or "I experience 4-6 migraines a week." My experience is that migraine is almost always with me, in some form or another. Luckily, it does not usually involve a horrible headache, but rather some amount of sensory distortion, and often in an amount that I can tolerate reasonably well. I have learned that migraine can appear in many ways, and can be pretty variable, even in one person--and when you are talking about a range of migraineurs, the variety can be extreme.

I prefer to talk about "migraine" as the whole spectrum of neurologically induced haywire that this syndrome brings with it. The range of symptoms can be scary--especially when a new one pops up for the first time. It is hard to know what does or does not fall under the migraine umbrella. (Is this vertigo part of migraine, or is it something else?)

For me, "having a migraine" implies a distinct beginning and end. For some people, that implication may be appropriate, as I know that some migraine attacks have distinct phases and follow patterns. Mine rarely do.

Anyway, this variety is one of the many complicated parts of this disease, and likely I'll talk about this again this month.

For now, I'll sign off by saying that if you have any migraineurs in your life, go easy on them.


Rebecca said...

If you don't have a definitive migraine diagnosis, you might want to check if you have non-epileptic seizures:
(A has had inexplicable neurological symptoms for a while, and this is our current theory. One wouldn't think diagnosis would be so complicated.)

Whatever you have, good luck with it. (We should catch up some time!)

Isis said...

That's interesting, Rebecca. Wouldn't these be detectable with an EEG? I had one of those tests early on, and it did not show anything. Given that my symptoms seem related more to exercise, let-down, and weather, I think migraine might be the right diagnosis.

I hope that you're getting some relief from those symptoms! And it would be great to catch up.