Not sure how to approach this from a pediatric perspective, but many around here have found great relief by boosting their serum 25(OH)D level. It happens by taking larger than normal amounts of vitamin D3.

Read through the following thread, make some notes, and talk to your son's neurologist about it.

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Thank you for your thoughts and prayers.

Yesterday I was called to come pick my son up early from school around 1:30pm, he was having a CH.  I brought him home and administered oxygen.  We got the headache to subside and he fell asleep.  No sooner did he fall asleep he was up screaming with another CH.  We repeated the process, this continued throughout the afternoon and night.

I became extremely worried about the amount of headaches he was having in that time frame.  He had a total of 6 within a 9hr span.  This is very unusual for his normal (not saying CH are normal) cycle of attacks.

Finally, at 11pm my husband and I decided to take him to Children's Hospital emergency room. (This is where we typically go to see his neurologist)  Of course as I figured they pretty much told me to go home and call back in the morning.  I refused to leave bc I couldn't bear to see my child continuously in that much pain.  The attending doctor tried to administer what they were calling a migraine cocktail, which turned into another fight.  Because we have been down the treating as migraines road. 

The hospital staff eventually got the neurologist involved and decided to administer him Indocin.  It was not a pretty reaction to the medication almost immediately he was doubled over in pain screaming his stomach hurt.  I just sat there thinking to myself what on earth more could possible happen to my son.

We were told just to sit and wait to see if he had another reaction to the medication, we waited and waited after another hour of we finally were allowed to go home.  My son slept the hour car ride home and was completely zonked out when he was carried up to his bed.  I was finally able to unwind and fall asleep myself.  I woke up this morning to the sun shining on my face, I have to admit I panicked a little bc it has been 8 months since I have gotten more than 3 hours of solid sleep a night.

I checked on my son and he was still sound asleep.  I just stood there in disbelief and almost cried tears of joy, bc he to finally has gotten one night of sleep in 8 months.  I hurried and got on the phone to call practically every pharmacy around to find this medicine they administered to him last night.  We got the prescription filled and administered it and just anxiously waited and waited for a headache to come.  Well it is 1AM my time and he has yet to awaken with a headache.... it has been 24 hours without any pain.   I am in shock and disbelief and just keep telling myself not to get to excited.

They would only give him a two week prescription and that is all he can take.  If it doesn't work then they are going to put him on another round of steroids.  I was just curious if anybody has tried the Indocin and if you have, have you had any positive progression with the CH using it?

Sbuti,

How is your son doing? I see your last post was around 2 weeks ago, but I wanted to reply because I have some knowledge about Indocin.

I was on it for a while and they helped my clusters, a little bit... not much. My headache specialist, however, had put me on it at the time because he told me for one condition, Indocin is basically a magic bullet. Paroxysmal hemicrania can manifest itself very similar to clusters, but I believe tends to come in even more attacks over the course of the day, which sounds very much like those 6 in a 9 hour span your son had before going to the hospital. Anyway, from what I understand, Indocin is first-line treatment for Paroxysmal hemicrania and should work WONDERS whereas it does little for CH because it is only a strong anti-inflammatory.

So, I don't know where you are right now with the searching and learning and medications, but I wonder if it's a possibility your son has paroxysmal hemicrania rather than clusters. Of course, I'm not a doctor, but it's amazing the response he had to the Indocin after the time he's been having. Just something to think about, and maybe ask a good HEADACHE SPECIALIST (better than neurologist!).

Please let us know how you're getting on; you're in my thoughts.