How do I prevent REM headaches? I wake most everynight with a headache?

Dear Becki:

I am so sorry you are having them--I know them all too well.  You might be having migraines during the night, but there is also a headache called "hypnic headache" that occurs during REM sleep.  The patient wakes up at approximately the SAME time in the night, during REM, with headaches which can be mild, moderate, or severe.  You can read about HYPNIC headaches on this website by typing "hypnic headache" in the search window.

I was having nightly headaches at 12:00am, again at 1:30am, 3:00am and then a horrific headache at 4:33am daily.  The 4:33 headache, I was not able to sit or lay down from the excruciating pain, but paced for hours crying and holding my head so it would not "explode."  It took going to a migraine (neurologist) specialist for 5 months before he figured out the pattern, and made the diagnosis.  I also have severe hormonal migraines that interfere with my ability to "keep down" oral medications, so my MD just prescribed a 7-day Zofran Patch that should help prevent vomitting and diarreah, and enable me to take the preventative for the Hypnic headache (and a narcotic for the migraine) without expelling meds before they are digested/absorbed.

There are very few documented cases of hypnic headache, and very few physicians who have ever heard of them, much less treated them.  Even many migraine specialists have not treated patients with hypnic headaches.  The Mayo Clinic has a physician named Dodick who treats them (he is in Arizona).  I am taking Indocin SR as a preventative, and Stadol-nasal spray when they "break through" and are severe.  Lithium is supposed to be the treatment of choice, but flunarizine is also used, and some patients take 2mg of melotonin or drink 3-8 cups of coffee (caffiene) before bedtime to prevent them.  Coffee does not help me, and Indocin SR (75mg) works most of the time.  I cannot tolerate a double dose unfortunately (gastrointestinal pain).

There are a few physicians in Europe, Japan, and Brazil who have published case studies.  If you google "hypnic headache" you will find articles to read about it.   If your physician is perplexed when you mention this type of headache, you might want to have handy a review article (with treatment recommendations) to show them so you don't have to pay for two visits.

I hope this helps.  Please write me back if you feel this is what you have, and if you learn of other treatment options.  I have not met another person who has them as of yet, but when I was diagnosed in 2007, there were approximately 80 case reports in the world literature at that time.  More will be diagnosed since this type of headache was officially added to the International Headache Diagnosis Directory.

Clemmie