Help for Severe Hypnic Headaches

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.

[DrNoopurMD]

Hi,

How are you?
Hypnic headaches are a rare entity and characteristically affect people over the age of 65 yrs. These headaches are believed to be related to REM sleep.
Lithium shows the best efficacy. The other treatment option is flunarizine as caffeine and indomethacin you have already tried.
http://www.neurology.org/cgi/content/abstract/60/6/905
You can discuss these options with your doctor. Take care!

[21taters]

Thank you for responding.  My physician is aware of these other treatment options, but would rather have me stay on the Indocin SR, and add Advil during the lingering daytime headache along with Reglan.  Again, with a history of gastric ulcer and a stomach already feeling irritated, I am uncomfortable with this strategy.  And I am even more uncomfortable with having an oral medication (that takes 2 hours to work) for severe hynpic attacks (despite prophylaxis) when I have projectile vomiting and diareah for hours, and cannot keep oral medications in my system.

[DrNoopurMD]

Hi,

Indocin has shown the best results in hypnic headache. Since you have a history of gastric ulcer, make sure you do not take the medication on an empty stomach.
You can try taking the pill in powdered form, and see if it helps.

[21taters]

Thank you.  I do always take the Indocin SR with food (never on an empty stomach).  The problem is that it is no longer preventing the headaches.  When we increase the dose (or add Motrin) I do get stomach irritation.  That's why he's added the Reglan to the regimen.  

In one study that I read, a 17-year followup on a handful of hypnic headache patients showed that only one was in remission.  The idea of taking Indocin SR nightly for years and years (and also not completely controlling the headaches) is frightening.  If my regimen for the "break-through" severe episodes worked, I would be less upset right now.  There are times where I fear going to sleep.  I am hopeful that a cause for the abberant REM reaction will be determined so that someday the "cause" can be addressed rather than the effect.  But I also understand that with so few people who have severe hypnic headaches, research on this entity is not abundant.

Thanks again for your help.

[hava]

This yog pranayam will be a great help.Do it and post your experience, so someone else can benefit.
Build up your timing gradually.If you feel tired or dizzy, stop and resume after 1 minute or later.Drink warm water.
Kapalbhati -(Do it before eating) Push air forcefully out through the nose about once per second. Stomach will itself go in(contract in). The breathing in(through the nose) will happen automatically. Establish a rhythm and do for upto 15 minutes twice a day.(Max 60 min/day) Not for pregnant women. Seriously ill people do it gently.

Anulom Vilom -  Close your right nostril with thumb and deep breath-in through left nostril  
then – close left nostril with two fingers and breath-out through right nostril  
then -keeping the left nostril closed  deep breath-in through right nostril
then - close your right nostril with thumb and breath-out through left nostril.
This is one cycle of anulom vilom.
Repeat this cycle for 20 to 30  minutes twice a day(maximum 60 minutes in one day).
You can do this before breakfast/lunch/dinner or before bedtime or in bed.Remember to take deep breaths into the lungs.

Bhramri Pranayam -Close eyes. Close ears with thumb, index finger on forehead, and rest three fingers on base of nose touching eyes. Breathe in through nose. And now breathe out through nose while humming like a bee.
Duration : 5 to 15 times

[21taters]

Dear Hava:

Thank you for your recommendations and for this program.   I will try these breathing exercises and see if I can "hum like a bee."  Thank you for taking the time to share this strategy with me.

[minderaser]

...trying this- to clear head- I wondered before, during my search, if a stuffy head was related. I often become stuffy,say, as when in an enclosed area: example: restaurants
I have had hypnic headaches for 4 years now.
Cannot take the medications that are strong asprin because of other issues.Have only tried caffine when I am awaken by a headache. Usually occurs several times per week
jo