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Posts (6)

Jul 20, 2017 · Chronic severe nocturnal hypnic headaches in Sleep Health

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!

Jul 19, 2017 · Chronic severe nocturnal hypnic headaches in Sleep Health

Hello Again,

I have to make a clarification to my last reply. When I said I was sleeping in an almost upright position, I meant sitting, not standing. I can see that wasn’t clear. I don’t know how you managed during the period when you spent hours each night, pacing. I have not read about the consequences of undertreated migraines, but I will look that up.
Stay in touch!
Cheryl

Jul 18, 2017 · Chronic severe nocturnal hypnic headaches in Sleep Health

Dear Taterjoy,

I am so sorry to read about your recent acute migraine. I have not had a headache that bad since the last time I had to take nitroglycerin! I’m glad you’ve recovered, but what an awful bout you must have had.

I wanted to add one piece of information about my headaches. About four years ago, I started sleeping in an almost upright position. Because the headaches would often go away IF I got up immediately upon waking with one, I thought perhaps I could forestall them by simply not lying down. Sitting up was not a perfect solution, but I feel it helped to some degree.

However, since learning about hypnic headaches, and taking caffeine at night, I have had only two headaches in thirteen days. This is a huge improvement. I have even been able to spend a larger portion of the night sleeping supine. I am taking more caffeine than what was recommended on the sites I read. (Either one strong cup of coffee plus 100 mg. caffeine tablet, or one 200 mg. tablet)

I have not yet made an appointment with a new neurologist, so this remains “my own diagnosis” at this point.
I’ll let you know what I learn when I do meet with someone.
I hope you do not have another bad migraine attack for a long time!

Cheryl

Jul 7, 2017 · Chronic severe nocturnal hypnic headaches in Sleep Health

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

Jul 6, 2017 · Chronic severe nocturnal hypnic headaches in Sleep Health

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.

Jul 6, 2017 · Chronic severe nocturnal hypnic headaches in Sleep Health

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!