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Sep 30, 2013

24 months post BM, and I don't mean bowel movement, thank goodness!

I rushed going back to work before I was ready. That's the one thing I do regret, not getting to know my beast as others have called it. I worked for exactly 2 months, and haven't been able to tolerate going back since. That was 2 years ago November. I advise not driving when you are going from fine to tired and weak. And, definitely get in touch with a neurologist if you can, as they are trained to deal with changes to the physical structure of the brain, which is what has happened.

I was lucky that the hospital assigned a neurologist in the hospital and that I've been able to continue with him. Though, I feel like more should have been done sooner, in my care, then my after effects wouldn't be so bad. But, tis what it is, and can't be changed.

As for the migraines that come after BM, they are different because not only is it a migraine, but the part of your brain that has headaches/migraines has been damaged by the infection and has to heal. It takes 18-24 months for complete healing, though you're most of the way there by month 12. All headaches occur in the meninges, where meningitis caused inflammation and swelling. That swelling takes a year or so to heal fully, though most of the healing is in the first 6 months. 

This pushes your baseline for triggering a headache/migraine up a few notches, or in my case a lot of notches. This also changes the severity, intensity, length of the migraines. Before BM, my migraines were a few hours and gone with home care in the next morning. Now, it's a beast, migraine prophylactic and abortive medications to prevent and stop migraines, three of those, and that doesn't always cut it. Sometimes I've had to go to the ER for them to give me IV drugs to cut the pain. That doesn't always cut it, and I get admitted to the hospital for the migraine. My longest migraine was 45 days, with no break, two admissions, two trials of steroids, two trials of DHE45-protocol (supped up NSAID), and lots of time in the dark with nothing going on. I was bored and hurting. The second run of DHE45 finally had some effect and it started to break up the constant, unforgiving migraine. That was this January and February. Before that, my record had been 15-days. Now, if it stays under 20 I'm happy.

I'm not trying to scare you. Just sharing that this is a beast unlike any we've been on before. And, it changes as time goes on. I'm at 24 months post BM and I know that unless there's a miracle drug, which would require much better understanding of neuroanatomy than we have now, I'm not going to get much better. I'm at the best I can be with this. From here on out it's an attitude game. And, sisters, that's the hardest game out there, but the easiest to win too.