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?

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.

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!

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

Dear Cheryl, I have not heard about a genetic component to Hypnic headache, and none of my relatives have headaches during the night, or upon wakening. However, my Mom did have migraines prior to menopause. Migraines can awaken sufferers from sleep (or waking with headache in the AM) and other conditions such as sleep apnea and those that that impose on oxygen flow (such as COPD, chronic smoking, etc) have been listed as suspected causes. I don't know if any are proven. I hope they can find their causes, and get some relief even if causes cannot be isolated/treated.

I am sorry to hear that you had two heart attacks and can no longer take Imitrex of others in that category. I hope your MD can provide other satisfactory treatments and/or preventatives for your migraines. I do believe that undertreating migraines can be a risk factor for hypnic headaches. I am trying harder to treat migraines quickly, use preventatives religiously, and remain hydrated; these methods usually help, but an ER trip (and overnight) to the hospital this weekend demonstrates that even preventatives and rapid acute treatment cannot always keep a migraine from escalating to a point of emergency. I am grateful to the Ambulance team and to the ER MD's who helped me recover. Feeling better, two days later. Here's hoping for better treatments, and cures! Taterjoy

Hi @cherylsd, I also get headaches when sleeping at night, but I think they are very much seem to be weather-related (barometric pressure maybe) and only worse during certain times of the year (now, for instance). There will be long periods of time, for instance weeks, where they will just plague me, and then go away for a while again. When these weeks occur, the headaches are definitely worse when I wake up in the morning.

One of my neurologists suggested topiramate as a prophylactic treatment, but I had a lot of drug metabolism polymorphisms and a drug-expert doctor I consult with regularly said that she does not think I should take it. Int he past, I've been prescribed verapamil as a prophylactic, and I had less headaches, but it made me sleep almost 24x7.

Very interesting that coffee (caffeine) seems to have helped you sleep. The only time it did with me was before we figured out that I have drug metabolism polymorphisms and I was so full of so many meds that were making me sick actually making me sleep a lot.

Hello Kelly,

My night headaches have been year-round, and not attributable to anything I've ever been able to isolate. I'm sorry you are suffering with the seasonal/barometric element. I know that does affect many people. (I have to look up 'drug metabolism polymorphisms', as I am unfamiliar with that term.)

I was also recommended topiramate, and took it for almost four years. I recently discovered that it is linked to bone density loss, a problem I already have. Needless to say, I am unhappy that no doctor mentioned this as a serious side effect.

So far, the coffee/caffeine treatment is working quite well. I had another headache-free night last night. It's early days, but I am hopeful.

I wish you well in finding a treatment that eases your headaches. We fellow sufferers know how debilitating they are!