I get adequate sleep, however, I get a headache most every night, during the night, and wake with the headache - either in the middle of the night or morning.
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Q: How do I prevent REM headaches? I wake most everynight with a headache?
Answers (2)
10/15/09 11:03pm
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
7/16/10 1:23pm
Hi David:
I am sorry to hear that you are also suffering from a REM type headache, and I was unsure if yours are severe and devastating, or not. Mine were crippling, and did not follow the "typical" pattern because I sometimes had severe and prolonged vommitting that required a visit to the ER.
That your appear to respond to Imitrex is interesting. It suggests to me that perhaps your headaches are not totally inflammatory (hypnic headaches ARE inflammatory). None of the immitrex-type medications touches mine, nor did hypnotics or narcotics. It is also more unusual--but not impossible--that hypnic headaches occur only on one side. The exact "timing" does suggest yours may be linked to brain wave patterns (such as REM).
I am still taking Indocin-SR (a potent anti-inflammatory) EVERY night two hours before sleep. I have only "missed it' three times in almost 3 years, and that was because I was throwing up so much from a migraine that I could not keep it down. Ended up in the ER each time. But the Indocin USUALLY works well. There is a risk in taking a potent drug like Indocin (called an NSAID--non-steroidal anti-inflammatory drug) because they can cause stomach ulcers. I have a histroy of stomach ulcers from my teens, but so far I have not had adverse reactions to Indocin.
I also take Depokote ER prophylactically for migraines, and use a Chemotherapy type "'patch" to prevent severe vomitting during the time of the month my headaches are worse. I also take about 14-15 Maxalt and Frova (same class as Immitrex, but I don't respond to Immitrex) each month as needed for migraines. They do not help my hypnic headaches, however. I use Stadol (nasal narcotic, used by people who are vomitting can cannot retain oral narcotics) for severe migraines, but it does not help my Hypnic headaches.
Have you tried seeing if caffeine tablets or coffee at night (ask your neurologist before you do this about dosing) to see if it might help prevent your headaches? It seems counterintuitive, but people with hypnic headaches are not "kept awake" by nocturnal caffiene. Coffee may increase the need to use the bathroom during the night. Some folks with REM headaches cannot tolerate the prescription meds, so caffeine is an alternative.
I have heard that calcium channel blockers have helped a few patients, but they are not generally considered to be as helpful as Indocin or Lithium. I am avoiding Lithium because it is liver-toxic, and I am already taking Depokote which can adversely affect liver function.
I hope your neurologist is able to figure this out. Is he/she a headache specialist? If not, I hope you can find a specialist "dedicated" to headaches. Please keep writing as I don't know anyone else with these headaches, and I would very much appreciate staying in touch and learning from your experiences. I have considered a visit to Mayo clinic for help, if things get worse as I age.
Thanks so much for writing, and I hope you are able to get a proper diagnosis and treatment. Please let me know, and I will post updates to this "string" should I learn anything more. Thank you.
Clemmie
7/18/10 12:05am
Thanks Clemmie. I really appreciate the information. Having read more about Hypnic headaches I am not convinced that mine are in fact hypnic since from everything I have read, they typically impact people over 50. I started getting them ~15 years ago when I was 30. 90% of the time they will wake me up at night or I awake with them. Occasionally I may get one during the day but this is very seldom and may in fact evolve from a 'trace of headache' I awake with.
I tried Depakote with no success. I also tried a calcium channel blocker with no success. I am just about to try another beta blocker, Atenalol 25 mg just before bed.
I have been to three headache specialists / neurologists but have not been impressed. I have just started working with a neurologist / sleep specialist. I will be taking another sleep study in a couple of weeks.
I have set the alert for this string so when ever you post something I should see it.
Thanks again.
David
7/18/10 12:55am
David: I wanted to respond before I fly out of state. My hypnic headaches began long before I was 50, which is reportedly "atypical" but it does happen. There have documented cases of people in their teens even (several in their thirties).
Regarding your trials with Depakote, it does not help my hypnic headaches at all, and does not do much for my migraines, EXCEPT that without Depakote as a preventative, a triptan (such as Maxalt or Frova) will not work on an acute migraine. Also, Calcium channel blockers did not help either of my headache types, but some people with migraines--and a few with hypnic headaches--have responded well. Have you tried using as a preventative (in working with a physician--not on your own)--nonsteroidal antiinflammatory agents at high doses? Don't try it without the consent of your MD, but if your headache is hypnic, it MIGHT respond to preventative therapy with an NSAID (but perhaps not if used acutely).
I hope the sleep specialist can identify your headache type and find an effective treatment for you. I will be out of state for about a week, but will check the string when I return. Clemmie
7/18/10 1:22pm
David,
It's highly advisable to check with your doctor to see what the specific diagnosis is. That makes a huge difference in treatment. You can read about hypnic headache in Hypnic Headache - The Basics.
If your doctor isn't able to help, it may well be time to consult a Migraine and headache specialist. It's important to note that neurologists and sleep specialists aren't necessarily Migraine and headache specialists. Take a look at the article Migraine and Headache Specialists - What's So Special? If you need help finding a Migraine specialist, check our listing of Patient Recommended Migraine and Headache Specialists.
I hope this is helpful,
Teri
7/16/10 11:31am
Becki, have you had any further success in preventative measures for your REM headaches? I have the same symtoms and am struggling to find a preventative.
Thanks,
David
9/24/11 3:37pm
David:
Did you ever see a headache specialist about your nocturnal headaches, and if so, were you treated with something that helped?
My hypnic headaches are no longer responding to my preventative (Indomethacin SR) and I was just prescribed lithium (low dose). It takes a while for it to build up in the blood enough to become helpful, but I am trying to find anyone with hypnic headaches who has taken lithium as a preventative.
I was also diagnosed with nocturnal cluster headaches, and was told that the lithium could help both. I am not recommending these to you (because only a physician can do that for each particular case) but I am writing in hopes that either you or Becki read this and can provide any experience in treating hypnic headaches. I hope you are feeling better these days.
Clemmie
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Nice to know someone else suffers from these. I get the same headaches, waking me up at 2 am, 4 am or maybe 6 am. Severe pain behind the right eye, right sides of the top of the head and back of the head. Imitrex clears them most times. Typically I will get them on consecutive nights for 4-5 nights, then clear for 3-4 days before the pattern starting again. They are not cluster headaches since I do not get any eye tearing or drooping. If i get a residual night time headache when I wake up it will gradually get worse during the morning and I will have to take imitrex. I have just had them diagnosed as a REM type of headache. The neurologist/sleep specialist may have said hypnic I don't recall.
I just wanted to check in on how you are progressing with them now since your post was a while back. Any updates on the preventative medication that you can offer.
Thanks so much.
David