Some of y’all might remember me. I have a teenager with chronic vertiginous migraine. I call him The Kid here.
Last time I was here, he was doing pretty well. But he’s not doing well any more. He has had migraine almost constantly since summer. The headache part hasn’t been constant. But the rest of it has been pretty much non-stop. He’s walking with a cane again, because of the imbalance and ataxia. His wordfinding is pretty seriously impaired most of the time. Photophobia and phonophobia are constant companions. And now osmophobia, too. The brainfog is thick and deep. He’s not been able to attend school enough this year to have any hope of getting any credits.
We switched in August from a pediatric neuro to a neuro who is board-certified in headache, hoping that would make a difference. The new neuro tweaked meds a bit – added Petodolex to the prophylaxis regine, switched him from Maxalt to sumitriptan with Aleve. The Maxalt seems to take the edge off his migraines when he gets it in time – it’s like he moves from the prodrome to the postdrome without much of an attack in between. The neuro thought a different triptan might work better for him, but sumitriptan with Aleve was horrible, so he’s back to Maxalt prn (no more than 3x per week, to avoid complicaitons from overuse). We can’t really tell whether the Petodolex is helpful or not. (He’s also taking propranolol, lamotrigine, and Migrelief (a combination of riboflavin, Magnesium, and feverview).
The neuro recommended improved sleep hygiene, so we’ve been working on that – but active migraine seems to mess up the Kid’s sleep, either making it impossible for him to sleep, or impossible to stay awake. But we’re working on it. Every night at 9 sharp, screens go off and he takes 5 mg of melatonin and a hot shower. (Unless the phonophobia is too bad for him to be able to tolerate the sound of water running.) After that, he usually doesn’t have too much trouble going to sleep, but can’t always stay asleep.
We’re looking at “next steps,” because this clearly isn’t good enough. We’ve ordered a pair of FL-41 lenses from the Moran Eye Center in Utah, on the off chance that those will help. We’re considering neurofeedback as the next thing to try, or perhaps food allergy testing.
We’re also wondering whether it’s time to apply to Social Security for disability for him. He’ll turn 18 this summer, and we can’t imagine him either working or going to school until the migraines are under control. And at this point, we’re not seeing much hope of the migraines being under control.