For 3 years we've been searching for help for my now 15 yr old daughter.
She gets 3-5 "ice-cream headaches" an hour 24/7. Duration = 30 seconds to 7 minutes. Location varies. On a pain scale of 1-10 (10 highest), they range from 3-8. We can't find any triggers - stress, food, allergy, evironmental, illness, cycle, growth spurts - nothing. She also experiences about 1/3+ of the symptoms of B12 deficiency that come and go. Coordination issues, lightheadedness, tremors, pallor, fatigue, cold skin, GERD, disturbed sleep. She gets between 3-5 hrs of sleep per night, about 45 minutes-1 hour consecutively. The dizziness is something we can manage, but we've found nothing for the pain. Specialists = 4 Neurologists, Adolescent medicine, pediatric cardiology, Psychology, dentistry, Opthamologists + PCPs. All tests = normal - MRIs, CBC, chem panel, eye, teeth, EEG, EKG, Halter Monitor. She's been on amitryptaline, fludrocortisone, Indocin, Rozerem, Sertraline. No measurable affect except the Rozerem helps her get more sleep, still not consecutive.
The only time she doesn't experience them is during intense physical activity - like volleyball practice or games. When they take a break during practice, she can count on head pain in less than a minute.
I did the dizziness, tremors, pallor, fatigue when I was her age, but grew out of it. One neurologist said could be a hereditary condition and could likely ease by age 21-23. I did not experience the same type of head pain and that is her key problem.
Stable home, no sexperimentation or drug/alcohol use. Live in rural PA. 4.1 grade point average, lots of friends. Normal menses. No allergies. Copes well, good body image, good self esteem, normal pain tolerance. Family history of headaches / migraines on both sides, but NONE like these.
I'm trying to research dysautonomia. Any other ideas?