I have a 14-year old son who has severe migraines. He has had them since he was 8 or 9. His doctor has used various terms in relationship to his headaches: status migraine, intractible migraine, chronic daily headache ...
His headaches typically last 5 days or longer (he had one headache that lasted over 6 months 3 years ago) and are at levels from 6 - 9 for the last few months. We rarely see even a couple of hours of the headache going lower. Anytime the headache is above a 4 or 5, he loses his vision. He cannot read, see faces clearly, or even read fairly large signs. In addition, he gets both sound and light sensitive and any change of level (up or down) causes even more severe pain. When the headache finally breaks, we will get from 1/2 day to 2 days break before he gets a new headache. Between the intense headaches and the loss of vision during the headaches (which once it occurs does not go away until the headache is back down to a 2 or so), it is almost impossible to get him to attend school or complete schoolwork. When his headaches are bad (7 or more), he often ends up staying awake all night because of the pain even with the headache even after taking Tylenol with Codeine. Then when he finally gets tired enough, he crashes and is almost impossible to wake for 8 - 12 hours.
We have seen many doctors about this (two pediatric neurologists at Kaiser, two-pediatric neurologists outside of Kaiser, several pediatricians, and a chiropractor). We are now seeing a doctor at the only headache clinic in our area that will treat pediatric patients that I am aware of. He is very kind and keeps working with us to try new things.
We have tried many preventatives and drugs to stop the headaches, including herbal remedies like ferverfew and the suggested vitamins, etc. Nothing seems to be affective at preventing the headaches nor stopping them once we start. If we give him a shot of Torridol, it stops the headache for 4 - 6 hours but then it returns, sometimes worse than before. Tylenol with Codeine helps some of the time, but not consistently. We have tried treating him with steroids (not prednisone, but similar). Although the steroids don't appear to help while he is taking them, once the course of steroids is complete, we can get a shot of Torridol. Then the headache will be gone and stay gone. However the last time, he had another headache after 1.5 days.
The school is hounding us because he is not getting an education. We tried sending him to school with a headache and they kept him for a couple of hours and sent him home because he was, of course, non-functional. They don't understand/believe that this is how he is almost all of the time. I hate to have him miss so much school and education. I also hate to make him suffer more than he has to when he cannot learn in this condition anyway. He misses most school and fun activities. He loves being in musical theater. But his headaches have made him drop out of two plays. He is not well enough to participate again at this point in his life. He rarely gets to participate in fun things since in a 3 week period, we are lucky if we have 3 good days.