October 14th, 2005


the impact of uncontrolled migraines

I originally wrote this as a comment to someone in the migraine community who asked for snippets demonstrating the impact of migraine on daily life. It got way too long, so I'm posting it here. I left in the comments to the original poster. Maybe they'll be helpful to anyone else struggling with uncontrolled migraines as well.

It is indeed possible to have uncontrolled migraines which means you can have pain much of the time which feels like one continuous migraine. There are huge chunks of the last five years that I don't remember for this very reason.

I'll share a few samples of writing from this time period, but I also want to emphasize that for me migraine is much more than a headache. It is a full-blown neurological disorder. It affects my emotions (which impacts my communications), my perception of spatial relationships, my balance (and because of this my ability to walk), and my hearing. Untreated, it has caused damage to certain areas of my brain that is irreversible. I am still able to work now; but I am not able to do the things I should be able to do at my age. I am 33, but my mind works like I am 50. I am not old enough to have "age-related" memory problems; but I do have them. I've lost friendships because I was too sick to go out or too irrational emotionally to interpret things correctly, didn't remember that they had called so didn't return the calls and thus seemed uninterested in maintaining the friendship, etc.

Fortunately, I've found meds that I hope will prevent even further decline. It took a very long time to find the right meds--I've had migraines and seizures since I was a teenager. It's very important that people understand what it's like to live with this stuff because sometimes the best doctors do get stumped. It's equally important to keep on searching for an answer because this is not a way anyone wants to live, and eventually answers often can be found. Hopefully the snippets I'm sharing here will give a bit of a glimpse into what it's like to keep searching and deal with the impact of the lack of answers.

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I am now on Topamax and have had only three migrains in six months. Part of that is because I live in a good climate. But having gotten through the fall without going through a constant migraine month is a very new experience for me. If your doctor doesn't believe you, find a new doctor who does and who will work with you to continue to find the right treatment plan. Staying home is a good temporary solution that may be necessary for a while longer; but it's no way to live the rest of your life. I thought there was no hope for me; but I am going on with life now, gradually increasing my activity and rebuilding my friendships and working on building a source of income. Maybe that family will come about someday as well.

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