Posting here in case anyone has ever heard of something like this, because even the paediatric consultant neurologists told us they have not seen it before.
DS14, never had a headache or migraine before and in good health (though with some mild hayfever and asthma in the past, mostly grown out of this). No one in the immediate family gets migraines either. No issues last term or over the Christmas holidays, went back to school ok for 4 days and then woke up at 3am on the 9th of January with what he described as the worst headache of his life and dry heaving. No auras or visual disturbances.
This has now continued for 46 nights, at 3am every night like an alarm clock and it just hasn't stopped. He has had only three nights "off", which were nights where he didn't sleep at all and kept himself awake as he was desperate to avoid the 3am headache. The last three nights he is now vomiting his dinner up as well. Increasingly he has pain while falling asleep. He has a headache and nausea all day plus discomfort reading or with light, but the big spike is every night around 3am.
He has had 2 MRIs which found a pineal gland cyst and a Rathke's cleft cyst near his pituitary, but the consultants seem to have concluded that these are incidental and not causing the issues. He's seen about 5 consultant paediatricians, 2 consultant neurologists (including privately), and they are all baffled. They keep asking about stress and lifestyle but he really isn't stressed generally (though he certainly is now, along with the rest of us) and has a generally healthy lifestyle with exercise, eats well, etc. Also this came on like a bolt from the blue, rather than ramping up slowly.
The only test he's had that's shown anything significant is a positive test for Epstein Barr virus (both the antibodies showing an old infection, plus the ones for an active infection so I guess that means a secondary/re-infection). That was many weeks ago now though. My hope was that this is all a weird manifestation of the virus and it will improve over time, but as the weeks wear on and he is getting slowly worse not better, that hope is dwindling.
He's had batteries of blood tests, all within normal ranges, neurological exams, ophthalmologist exam.
No painkillers or preventers have had any effect - ibuprofen, paracetamol, both together, ibuprofen lysine, sumatriptan, and we have done a week and a half on propranolol but that hasn't had any effect yet either.
He hasn't been able to go to school since before Christmas as every time he tries he has to run out of class to be sick or dry heave, or he is just in a daze. We are absolutely at our wits end - our next appointment with the consultant is on Friday but I fear their working diagnosis of "atypical acute chronic headache/migraine" is so vague - all the treatments take weeks and weeks to determine if there is any effect before we can try the next one. We have full private health insurance but as I am now discovering, it doesn't always help when the consultants both NHS and private have no idea what to do except try migraine prevention (while admitting they don't know if it's a migraine at all, or if it will work). I've asked for referrals to migraine clinics but the paediatric consultants want us to try front-line migraine prevention first.
Has anyone ever heard of something like this before? Any ideas gratefully received.