Chronic severe nocturnal hypnic headaches

Posted by taterjoy @taterjoy, Aug 29, 2016

I am looking for anyone else who has been diagnosed and treated for chronic, severe nocturnal hypnic headaches. I have had them for about 12 years, and on treatment, but not optimal treatment. I am interested in hearing how others with this rare diagnosis are being told to treat them safely.

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In my 50s I would wake up at 3am with a headache. It could escalate to a migraine very quickly if I thought it was mild and waited to do coffee. I had read that this happened to seniors. I figured out eventually that it was due to food eaten about 9pm. Usually, a dessert was the item. So, if I didn't eat gluten items, no headaches or migraines happened. With food industry ingredient changes of colorings, flavorings, and processing changes for many foods in last 20 yrs, more than gluten triggered my headaches and migraines. It now can happen during the day, or anytime. I avoid any trigger foods. Haven't had 3am incidents for years, as I never eat potential trigger foods past dinner. As a senior, something in me likely changed with my chemistry too.

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@karenakr

In my 50s I would wake up at 3am with a headache. It could escalate to a migraine very quickly if I thought it was mild and waited to do coffee. I had read that this happened to seniors. I figured out eventually that it was due to food eaten about 9pm. Usually, a dessert was the item. So, if I didn't eat gluten items, no headaches or migraines happened. With food industry ingredient changes of colorings, flavorings, and processing changes for many foods in last 20 yrs, more than gluten triggered my headaches and migraines. It now can happen during the day, or anytime. I avoid any trigger foods. Haven't had 3am incidents for years, as I never eat potential trigger foods past dinner. As a senior, something in me likely changed with my chemistry too.

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Interesting. I recently discovered that my migraines that start during the night seem to have been, at least in part, triggered by low glucose (hypoglycemia). I was wearing a continuous glucose monitor for another reason, and this pattern just popped out of the data. Not dangerously low, but potentially symptomatically low. So I started eating something with protein and fats before going to bed (an egg, a bit of turkey plus nuts, whatever). The monitor showed a consistently higher level of glucose during the night -- not a lot higher, but higher, and I'm down to less than half the morning migraines I had previously experienced. I'm a senior, too, and have had migraines my entire life. This particular pattern started a few years ago, and had been getting worse over time. That's actually compatible with avoiding simple carbs (desserts) in the evening. So maybe? Worth a shot.

The whole issue of trigger foods is a swamp -- just too custom to the individual and too many possibilities. It becomes a matter of creating your own elimination diet and obsessively keeping some kind of diary to track both the food and the headaches to look for correlations that might actually be causal. A time-of-day pattern is really helpful, because you can start with your evening foods.

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@projfan

Interesting. I recently discovered that my migraines that start during the night seem to have been, at least in part, triggered by low glucose (hypoglycemia). I was wearing a continuous glucose monitor for another reason, and this pattern just popped out of the data. Not dangerously low, but potentially symptomatically low. So I started eating something with protein and fats before going to bed (an egg, a bit of turkey plus nuts, whatever). The monitor showed a consistently higher level of glucose during the night -- not a lot higher, but higher, and I'm down to less than half the morning migraines I had previously experienced. I'm a senior, too, and have had migraines my entire life. This particular pattern started a few years ago, and had been getting worse over time. That's actually compatible with avoiding simple carbs (desserts) in the evening. So maybe? Worth a shot.

The whole issue of trigger foods is a swamp -- just too custom to the individual and too many possibilities. It becomes a matter of creating your own elimination diet and obsessively keeping some kind of diary to track both the food and the headaches to look for correlations that might actually be causal. A time-of-day pattern is really helpful, because you can start with your evening foods.

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I have had hypnic headaches for at least 9 years. I have tried amatriptilene, topomax, norotriptilene, coffee,indomethcin, Qulipta ,melatonin and nurtex. Some didn’t work at all ,some worked sporadically, some made it worse. I average 15 to 18 nights per month. Last October and November I thought they were gone for good. Feel so blessed to wake up refreshed. But then they returned. I am so sick of feeling drugged when they do work and if they don’t the headaches intensify. A non drug fix for me is to stationary bike for 25 minutes in the middle of the night. The headache leaves but I am awake for the next hour or so. Occasionally I take sumatriptan, the only thing that takes it away other than the exercise. The headaches are on the right side and not severe .

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I self diagnosed myself with Hypnic headaches. Middle of the night Migraines started about 7 years ago in my mid 60s. I at first thought it must be sleep apnea but I passed my sleep test. I had a CT of my head and was seen by a Neurologist- all was normal. By the time I saw the Neurologist a few years ago, I was already treating myself with one Excedrin at bedtime. It works very well but if I forget to take it - I wake up 2-3 in the morning with the Migraine. Like other posts - I have to get out of bed and sit up - I, at that point take an Excedrin and the headache subsides. That is the only time I take abortive meds. The Neurologist suggested that I may have rebound headache, but since I only usually take the Excedrin as a preventative, I do not agree.
I think few doctors know and understand Hypnic headaches. They are terrible!
I also get Airplane headache - usually with a rapid descent in altitude - I usually just take a couple Aleve before descent which prevents. I also get an occasional mild regular migraine. The Neurologist did not think any of these were related. Other than the headaches, I am healthy, normal weight, very active and not on any meds.
Additionally- I usually take the Aspirin free Excedrin to avoid stomach issues.
I hope posts like these help more people and that there is more research into the problem

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@joannbar

I self diagnosed myself with Hypnic headaches. Middle of the night Migraines started about 7 years ago in my mid 60s. I at first thought it must be sleep apnea but I passed my sleep test. I had a CT of my head and was seen by a Neurologist- all was normal. By the time I saw the Neurologist a few years ago, I was already treating myself with one Excedrin at bedtime. It works very well but if I forget to take it - I wake up 2-3 in the morning with the Migraine. Like other posts - I have to get out of bed and sit up - I, at that point take an Excedrin and the headache subsides. That is the only time I take abortive meds. The Neurologist suggested that I may have rebound headache, but since I only usually take the Excedrin as a preventative, I do not agree.
I think few doctors know and understand Hypnic headaches. They are terrible!
I also get Airplane headache - usually with a rapid descent in altitude - I usually just take a couple Aleve before descent which prevents. I also get an occasional mild regular migraine. The Neurologist did not think any of these were related. Other than the headaches, I am healthy, normal weight, very active and not on any meds.
Additionally- I usually take the Aspirin free Excedrin to avoid stomach issues.
I hope posts like these help more people and that there is more research into the problem

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Thank you, I will try the excedrin ( migraine?). I also had all the diagnostic tests, cat scan , ct with dye. Neurologist is just guessing and throwing different drugs. I had to ask him to prescribe nurtec. I’m 70 , and it started at 61 after menopause.

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@mlpults

Thank you, I will try the excedrin ( migraine?). I also had all the diagnostic tests, cat scan , ct with dye. Neurologist is just guessing and throwing different drugs. I had to ask him to prescribe nurtec. I’m 70 , and it started at 61 after menopause.

Jump to this post

Yes - I am sure it’s the 65 mgs of caffeine in it that works - only one because with 2 - I can’t sleep.
Like I said they do make aspirin free Excedrin - and I use generic.
I am not a coffee drinker and tea is an inexact science as far as caffeine content. I am 71 and I think I am stuck with the condition for now.
I wish you luck - I know how miserable they make you feel.

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