The educated patient

Headache and Migraine patients educated about their disorder have better outcomes. #MHAM

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I have not exactly had a great outcome since I have yet to find a preventative I respond to and didn’t even respond to botox. And my neuros basically said there was nothing more for me.

Nevertheless, educating myself was one of the best things I have done. I learned about not taking my triptans more than three times a week. I learned about MOH. I learned about triggers in more detail than my doctor bothered explaining it. I learned to track my migraines.

Hell, I learned what a migraine actually is doing in the brain.

I educated myself until I knew a bad neuro when I met one… using old theories and terms. And I knew what to ask for. And I know when they tell me they ran out of ideas and I simply do not respond to treatment… that is actually a lie, it is in fact they are not aware of all the option available. Trust me I have not tried a hundred preventatives. Pretty sure I would remember that one. I have tried the top 12 or so, then repeated some, and took some together. Apparently they ran out of ideas at that point. Even when I suggested one that does well for persistent migraine auras, I was shot down. It seems to me Canadian neurologists have two things on their mind for chronic migraines: topamax and botox. I realize the study they got that from, but that does not mean treatment ought to be exclusively those two things if they don’t do a damn thing. Broaden your horizons!

I also learned status migraines are a dangerous migraine to have. That we should go to the ER for them. And I listened to that. Turns out though the ER never got that memo. Due to their lack of understanding of what a status migraine is and how to treat it, I stopped. I ended up with permanent nerve damage from one long status migraine, but, fact is it would have happened anyway once they turned me away.

So I suppose what I am saying is it is weird how I can have all this knowledge but it makes no difference in my Outcomes because of the medical professionals I see don’t actually seem to share that knowledge. Or care to listen. Of think migraines are that important.

Nevertheless educating ourselves deeply helps with our self management of our migraines. And certainly it can also help with our doctor related treatment, depending on the doctor, of course. It can tell you what to even look for in a doctor. I had neuro I ditched on meeting them due to the lack of knowledge they had about migraines and treatment. The more we know about research as well the more we keep up to date on what is going on. Our risk factors for example.  Treatments that are coming down the pipeline. New research on how migraines work, which is fascinating actually.

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