Gravity's Rainbow

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Migraine log – Botox round 3 edition

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The first time I got Botox, I was in high school. I was part of a clinical trial, but I don’t remember what stage. I got very woozy and asked to lie down for a few minutes after the injections. My neurologist told me there was no need for that and audibly scoffed when I wobbled. Not the greatest bedside manner. My migraines stayed the same.

I got Botox the second time in September 2013. It didn’t seem to make much of a difference either way.

After topiramate failed, I tried Botox again early this July. Perhaps the third time is the charm – overall migraine frequency might be getting lower and severity absolutely is.

Migraine frequency and severity.

Migraine frequency and severity.

If I consider not just the counts, but the severity, the last few months look very, very good. If I assign the following weights* to each class of migraine

  • Didn’t record = 1
  • Not too bad = 2
  • Pretty bad = 4
  • Very bad = 8
  • Kill me = 16

then the sum of the weighted migraines decreases dramatically in recent months.

Migraine counts and migraine counts weighted by severity

Migraine counts and migraine counts weighted by severity. If you compare the July-October frequency last year to this year, I actually had slightly more migraines in the most recent period. But when you consider the severity, the difference is dramatic.

 

This means that the amount of pain I am in is decreasing. A lot.  Compared to the previous year – even the same season – I am having a lot less pain. In fact, in the last 2 months, I haven’t had any migraines worse than “Pretty Bad.”**

To give a bit of context for the decrease I’ve experienced, imagine I have a migraine every day. If the migraine is always “Not too bad,” then the Severity Weighted Count is 60. If the migraine is “Pretty Bad,” then it’s 120. You can see that it is normal for me to have months above 60 and I even had a month over 120 in the last year.*** In October, I had a Severity Weighted Count of 40. In the past year, I had no other months this good, though September was close.

It’s nice to have the data that show this, especially for insurance appeals****, but the real proof comes from my life. I’ve been working pretty regularly and actually making measurable progress. I’m not ashamed to go to my next meeting with my supervisor. I’m hanging out with friends more often and even dating more. I’m able to exercise consistently enough that I’ve gotten strong enough to do 100 squats or walk to work.

I don’t know why the Botox seems to be working this time when it didn’t make a good goddamn dent last time. Maybe it isn’t why the last few months have been so good. But this data is definitely encouraging enough to for a second dose next month.

*This is an 2n scale. A more typical logarithmic (10n) scale may be more appropriate.

**Not too bad = can get out of bed and do simple chores | Pretty bad = very uncomfortable to get out of bed and move, but can often read or listen to podcasts | Very bad = nearly impossible to get out of bed. Cannot read or listen to anything. Communication difficult. | Kill me = I am obliterated

*** The maximum Severity Weighted Count (a “Kill me” migraine every day) is 480.

****Each Botox treatment costs ~$1000 out of pocket

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