Dear Doctor:
I am seeing one of only two headache specialists in my state for headaches which have been diagnosed as severe hypnic headaches (they wake me from sleep 2-3 times per night, and the worst lasts for 3-4 hours) for which I take nightly Indocin SR. Up until recently, the Indocin SR was working so long as I took it 2 hours before bedtime.
I also have a 30-year history of severe hormonal migraines that are finally responding fairly well to preventative therapy with Depakote ER (after trying dozens of other meds and combinations). Per month, I am now down to taking tripans acutely maybe 6 times for the migraines (best it's been in years). IN addition to the Indocin SR and Depakote ER, I am taking Synthroid daily for hypothyroidism (hashimotos).
Lately the Indocin SR is not controlling my hypnic headaches and the narcotic my MD prescribed (Stadol) for severe hypnic headaches (which I get about once or twice per month, despite prophylactic Indocin) makes me violently sick. Adding compazine does not help. He is unwilling to try other narcotics, but has just prescribed for me a new med to use acutely called Treximate (taken orally). The problem as I have explained to him is that with my severe hypnic headaches, I cannot keep down any medications, and the suppositories also exit during bouts of intense intestinal cramping/diareah.
Just as before I started taking Indocin SR almost a year ago, I am experiencing now a daily headache (behind right eye primarily, but it varies) after waking with a mild hypnic headache. I have lost confidence in my relationship with my neurologist and the pain is so intense during my acute episodes that I am at a loss for consultation. The other headache specialist in my state lives about 7 hours away, and I and their website does not mention treatment of hypnic headaches. I have tried adding coffee at bedtime. I am writing to see if the Cleveland Clinic has experience treating severe hypnic headaches, and if not, what other major clinics in the US could be recommended.
I am 51 years old, exercise daily (3 miles fast-walking) when able, and have followed a high-fiber (natural, low in preservatives adn prepared foods) healthy diet for many years (I was diagnosed with PCOS about 30 years ago). I also am the only person in my extended family to have hashimotos thyroiditis, neutropenia (no known cause), PCOS, acetylcholine allergy (heat/cold changes), and podokeratosis plantaris. I have retinal thinning in one eye that is being closely watched for glaucoma. I wiegh about 114 lbs, but lose 5 lbs of water weight during acute hypnic attacks (and get dehydrated, feeling sick for about 4 days). My MRI last year showed only a nasal type of small tumor that was not clinically important. Thank you for any and all advise.