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Migraine Design Project, Question 1

I’m going to answer Molly’s questions one at a time so I can give more thought to each one individually. I also think it will be easier to get a dialogue going if there’s only one questions at a time. Of course, the only way to get a dialogue going is for you to submit comments (but only if you’re willing to make your thoughts public). Nudge, nudge. 😉

How long have you suffered and how much of your time is spent in pain?

I’ve had headaches all my life, with CDH setting in when I was between 11 and 13. I’m now 29. So the answer to the question is “way too long.”

I was able to control them pretty well in high school and college by taking tons of Advil and Tylenol regularly. They knocked me flat when I was in grad school, with severe dizzy spells as the prominent symptom.

I spent about five years in horrendous pain. My average level was 6; never lower than 2 and sometimes as high as 9.75. (I’m reluctant to label anything a 10 because I don’t want to tempt fate.) In that period I was barely functioning or confined to bed four times a week on average.

With an occipital nerve stimulator and drugs that help — a combination that I’ve been using for about 3 months — my average pain level is probably a four. That average includes the fluctuations of pain in a day. I can be at a one or two and have the pain spike to a six for a few hours. When seven or eight level pain hits, it almost always knocks me out for the rest of the day. I still have days or partial days where I’m stuck in bed, but only about 10 times a month. Sad that 10 times a month means I’m having a good spell.

I think I cope with it pretty well, but I get tired of feeling like I’m a rag that’s been wrung out. And having dark circles under my eyes. Headache is an invisible illness, but I can see it on my face too clearly.

3 Responses to Migraine Design Project, Question 1

  1. Angel says:

    I’m sorry you’ve suffered far too long with this 🙁

    I can see the effects of “only” a year of CDH. Not just my face, but I’ve gone from about 10% grey to over 50% in less than a year (and I’m only 35 EEK!)

  2. walksalone05 says:

    I thought I was bad with having a four-year migraine which I now control with a tens unit.

    ********
    Just because some people suffer more than others doesn’t mean that the pain affects shouldn’t affect you as much. Your suffering is your own and it’s the most real to you and it likely has as much of an impact on you as it does on others with longer histories.

    K

  3. ann says:

    orginal quote:
    Just because some people suffer more than others doesn’t mean that the pain affects shouldn’t affect you as much. Your suffering is your own and it’s the most real to you and it likely has as much of an impact on you as it does on others with longer histories.

    You said it perfectly.I just found this blog and what you said was just what I needed today.Thank you!

    ********
    Thanks for the kind words. I’m glad to hear that the blog is helpful for you. I posted about a quote I found that addresses the same thing: http://www.thedailyheadache.com/2007/03/you_have_what_y.html

    Take care,
    Kerrie

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