Chronic severe nocturnal hypnic headaches

Dear Taterjoy, Thank you for your response. I have not been diagnosed with hypnic headaches yet, but at least I now know that there is this category which seems to match what I have. I have also been through two sleep studies to eliminated apnea and whatever else, plus MRIs.
I can hardly imagine going through what you have gone through. The headaches I have been getting the past twelve years have not been as severe as my old daytime migraines, which definitely had a hormonal component (but were not daily, more like 10-15/month). At that time I used Imitrix for relief, but have had two mild heart attacks, and have been told to discontinue use of that family of drugs.
Have you heard/read anything of a possible genetic component? Two of my siblings, who have also been migraine sufferers through their adult life, are now waking at night with headaches. It seems unlikely that such a rare form of headache would strike three members of one family, but I am going to suggest they read about hypnic headaches.
My sincere best wishes to you. I hope you have now connected with a neurologist whom you trust.
Cheryl

Hi Cheryl, and welcome! I so appreciate your post, and am so happy for you that caffeine coffee can prevent your nightly headaches, which do sound like Hypnic headaches. I am sorry it took a while to find the correct diagnosis. It is such a rare headache, that the specialist I was seeing in California who has conducted primary research on headaches for decades, did not for a long time "recognize" my symptoms though I was desperately traveling to see him every month for many months, for relief. When I was finally diagnosed, there were only about 87 cases worldwide reported in the medical literature since the late 1980s, when they were first reported by a Dr. Raskin. I had been seening (for years) two other nationally prominent headache specialist neurologists in other states (not at Mayo--I lived too far away) prior to seeing the headache specialist who finally diagnosed it. It is/was such a rare headache, that many at that time had never seen a patient with it. It might still be rare, and possibly most general neurologists across the USA have never diagnosed it treated patients who have hypnic headache.

Topimirate did not help me, either. Unfortunately, neither did many cups of coffee or caffeine tablets prior to bedtime. Like you, I also had serious Migraine headaches (under-treated) for many years and I have read in the literature that some other people with Hypnic headaches share that history. A few other possible risk factors that were mentioned (but not proven) included a history of employment with "shift work" (circadian rhythm issues) and frequent travel through time zones, or moving across time zones. I shared those "possible" risk factors but not these others that were discussed as potential risk factors such as history of long-term smoking tobacco, COPD, and/or sleep apnea. I pray that this disorder is not a progressive one and that your headaches can always be prevented by drinking two cups of strong coffee before bedtime; or that these headaches can/will someday resolve on their own. Thank you so so very much for posting, Cheryl!

on the sites I have read, coffee (or caffeine tablets) are one of the suggested treatments, although not as effective as lithium, but I don't want to use that drug unless I have to.

Welcome, Cheryl.
Good for you for doing your research. I understand the desire to have a wholistic approach to your sleep issues and headache issues. Have you considered consulting with a sleep medicine center? Here's a description of the Sleep Medicine Center at Mayo http://mayocl.in/2d9garj. I understand you may wish to go elsewhere, but I wanted you to know they exist.

I'm tagging @kdubois and @sandytoes14 in case they have personal experiences to add along with @taterjoy.

Cheryl, what is the significance of drinking strong coffee before bed? How does that help?

I saw a neurologist at the Mayo Clinic several years ago. I stressed that 90+% of my headaches wake me between 3:00 and 4:00AM almost every night, and this pattern began after my 55th birthday. (I am now 67.) Prior to that I got daytime migraines. Hypnic headaches were never mentioned as a possibility, either at Mayo or by my local neurological PA. I have only discovered this category on the internet this week! My headaches match the description almost perfectly, except mine are often one-sided. I had been taking topiramate for the past four years as a prophylactic treatment, but its effectiveness was questionnable. Then I learned that this drug is sometimes associated with significant bone loss, another thing I found out on my own, even though my health history includes osteoporosis. I am not taking any prescription drug right now. I drank two strong cups of coffee the past two evenings before bed and slept without waking (except to go to the bathroom!) for the first time in years. We'll see if that continues to be effective. I am hoping to find a new neurologist who takes a more wholistic approach to care. My heart goes out to the patient (taterjoy) whose headaches sound much, much worse than mine!

HI Colleen, thankyou for your rapid response and suggestion. I read Dr. Swansons summary years ago, and have tried all of the treatments listed (one by one, and in combinations). I have been taking Indomethacin preventatively now for nine years nightly exactly two hours before bedtime and I drink coffee before bedtime as well. I take a medication to prevent stomach ulcers also. I have tried others listed with it (lithium, Depakote). Before the diagnosis of Hypnic headaches and use of indomethacin, I was waking up 4 times nightly, cyclically at the same tiems each night, with a severe inflammatory headache. I basically woke up and had to quickly stand, grab my head, and pace for hours crying. I could not sit or lie down, and usually ended up throwing up after hours of pacing and being so fatiqued I could no longer stand. Prevention with Indomethacin has helped me more than other remedies, but it too fails from time to time, and many mornings I awaken with a mild hypnic headache despite preventative treatment.

The main issues I have is periods of abdominal severe irritation with Indomethacin (I then take Carafate when acute), and I would say on average, the indomethacin fails at least 1-2 times per month, in which case I inject Toradol in the middle of the night (to avoid the ER), and take frovatriptan and ondansetron with it. If all else fails, I end up at the ER (about once every 2 years in recent years--it used to be more often). The diagnoses are Hypnic headaches, cluster headaches, and hormonal migraines (cyclically). I used to wear a Sancuso patch 24/7 to help prevent vomiting all night and ending up at the ER, but my vomiting is under better control now. The Narcotic that was prescribed historically (Stadol) made me violently sick (vomiting and diarreah). I have had about 3 brain scans over the years due to the violent intensity of the headaches upon waking; all showed no tumors.

All in all, I have tried about 40 meds and/or combinations of meds over the years to control hormonal migraines, hypnic headaches, and cluster headaches. I believe the hormonal migraine headaches are related to diagnoses of PCOS (for which I have used strict diet, exercise, and weight control since I was 20 years old) and hashimotos thyroiditis with hypothyroidism. Before treatment with Synthroid begun in 2002, my headaches were chronic daily headaches. I also have two endocrine related allergies. In the past I was patient of two specialists at Jefferson Headache Center in Philadelphia, PA;, and also have seen a specialist in North Carolina (Charlotte area); and one in San Francisco most recently (I live in CA now). This San Fran. Specialist diagnosed Hypnic headaches in 2007 after about 5 months, having me on about 7 different meds prior to diagnosis; but after a few months, his advice became bizarre and unhelpful.

Despite how this sounds, I am otherwise healthy. I eat healthfully, my weight is kept around 110 (5'5") and I exercise daily. All vital signs and cholesterol values are normal.

I would love to hear from those have tagged in hopes that they may know other patients with recalcitrant hypnic headaches to learn what they are doing, and what might work. I have been a part of an internet international Support Group for headaches moderated by Teri Roberts for over 30 years, and have not met even one patient yet with hypnic headaches. Thank you so much for replying to my comment!

Very happy to see that Mayo set up Mayo Connect! Thanks again for your help Collen!!!

Welcome to Connect @taterjoy.
Here is a response from Mayo expert, Dr. Jerry W. Swanson, who responded to a similar question http://www.mayoclinic.org/diseases-conditions/chronic-daily-headaches/expert-answers/nighttime-headaches/faq-20057919
I'm also tagging fellow Connect members @lauriedr @teege1 @lisafl @dawn_giacabazi @jals. While they haven't reported specifically hypnic headaches (night time headaches), they have all talked about managing chronic headaches.

TaterJoy, what treatment are you currently taking? Do you continue to be woken up every night? Functioning on interrupted sleep can't be great for optimal functioning.