Want to connect with people dealing with hypnic headaches

Hi Lisa, thank you very much for your reply.
The neurologist who follows me confirms that it is a behavior compatible with hypnic headache, by standing and walking the pain quickly eases fortunately.
After years of trying to treat it with various drugs including the latest one called Quviviq (which I absolutely could not tolerate), he booked me for hospitalization to do a sleep study (unfortunately it takes a long time for this to happen). I would like to point out that before this drug I took another drug for a few years called Stilnox, which did nothing but delay the pain which was postponed until around 5/6 in the morning. Currently I have come up with a tactic: I set the alarm for 2 in the morning to force myself to wake up early on the headache, and then after about 20/30 minutes I go back to sleep. It may seem absurd but this helps me quite a bit.

Hi docb99, in a certain sense your story is similar to mine. Before the hypnic headache I also suffered from another type of headache. Occasionally I had severe pain in which the pain was truly unbearable with intolerance to light and could last for many hours. Then inexplicably about 8 years ago it transformed into a hypnic headache with pain that is less intense but is present every night.

I’ve posted in headache threads about migraines.
I think my 40 + years of occasional but intense migraines evolved into occipital neuralgia when I developed cervical neck pain a few years ago from arthritis - typical aging.
It lasted three years and then it gradually became milder but daily headaches each morning without so much occipital pain.
My neurologist said they were rebound headaches. I don’t think they were but she prescribed a course of steroids to break the cycle.
I recently found out about hypnic headaches and think I may have that type now but no diagnosis of that.
Sumatriptan at night prevents waking up with head pain but it’s not a good thing to do. I do drink coffee at night and in the morning.
My headaches have changed over the years. I don’t know if that is typical but I think it is possible because our bodies change as we age.

Hello @marione2000,

This must be a very unpleasant type of migraine. I'm sorry that you are dealing with the lack of sleep as well as the pain. I found some information from the American Migraine Foundation regarding hypnic headaches. Here is a link to that article
https://americanmigrainefoundation.org/resource-library/hypnic-headache/
As this article mentions other causes for these headaches, I wonder what other tests or scans have been done over the last eight years that you have had these headaches?

Hi @marione2000. Dealing with hypnic headaches all that time sounds like a lot of nights with pain and less than ideal sleep.

Everything you said was perfectly understandable.

Hoping members in this discussion such as @kjs1255 @kmsb @taterjoy will exchange experiences and advice with you related to hypnic headache. I'd also like to invite @hopeful33250 to offer some support.

What did your doctor think about why walking when you get out of bed helps with the headaches? Did your doctor offer any other treatments or a referral at this time?

Hello everyone. I'm part of this club too, I've been suffering from hypnic headaches for over 8 years now. I am a 55-year-old man and I live in Italy. The pain is present every night and manifests itself after about 3 hours since I fall asleep, and it causes me to wake up with a uniform pain all over my head, I feel a strong pressure on my head and it is very hot. I don't have tears and the light doesn't bother me, but pain forces me to a forced awakening. Fortunately, once I get out of bed I start walking and within 15 / 20 minutes the pain eases a lot. As a therapy I have tried everything (caffeine, indomethacin, carbolithium, tryptans ..etc etc) without having benefits if not numerous side effects. The only drug that has been shown to be effective is called Difmetré, but after a course of treatment my doctor discouraged me from continuing because he said it is addictive and leads to several contraindications. I am available to discuss with you also to exchange experiences and advice on this pathology that unfortunately still remains too unknown.Excuse me for my poor level of English..

Hi @marione2000. Dealing with hypnic headaches all that time sounds like a lot of nights with pain and less than ideal sleep.

Everything you said was perfectly understandable.

Hoping members in this discussion such as @kjs1255 @kmsb @taterjoy will exchange experiences and advice with you related to hypnic headache. I'd also like to invite @hopeful33250 to offer some support.

What did your doctor think about why walking when you get out of bed helps with the headaches? Did your doctor offer any other treatments or a referral at this time?

Hello everyone. I'm part of this club too, I've been suffering from hypnic headaches for over 8 years now. I am a 55-year-old man and I live in Italy. The pain is present every night and manifests itself after about 3 hours since I fall asleep, and it causes me to wake up with a uniform pain all over my head, I feel a strong pressure on my head and it is very hot. I don't have tears and the light doesn't bother me, but pain forces me to a forced awakening. Fortunately, once I get out of bed I start walking and within 15 / 20 minutes the pain eases a lot. As a therapy I have tried everything (caffeine, indomethacin, carbolithium, tryptans ..etc etc) without having benefits if not numerous side effects. The only drug that has been shown to be effective is called Difmetré, but after a course of treatment my doctor discouraged me from continuing because he said it is addictive and leads to several contraindications. I am available to discuss with you also to exchange experiences and advice on this pathology that unfortunately still remains too unknown.Excuse me for my poor level of English..

I am a 70 yo female. I began having nighttime headaches appx 20 years ago. For the first 3 years, I had numerous doctor appts, MRIs, MRAs (both with and without contrast), other scans, sleep study, etc with no diagnosis. While searching "nighttime headaches" I found that it is a real thing with "no known cause/no known cure". That actually put my mind to ease that I did not have a life-threatening problem and I stopped the doctor appts.
In 2012, my daughter suggested a blood test (conducted by a registered dietician & a cost of $800) that tests against appx 150 foods and additives. She suffers from gut issues and eczema. She received great relief when she avoided the "trigger" foods that were identified for her. Many were foods that we consider very healthy (ie, her morning smoothie of yogurt, oatmeal, spinach, peanut butter... all on her reactor list).
I have also had good results and have been able to function. But, quite frankly, it's very hard to stick to such elimination... and my list seems to be growing. While checking online into the topic again recently, a suggested book popped up 'What Do You Eat If You Can't Eat Anything'. That nudge has made me want to try again to find a reason for the headaches.
I would love to volunteer to be in a clinical test group. I am almost certain that brain activity monitoring would show the headache onset... a sensation at the base of the neck that "tingles" its way up the back and top of my head (this part used to be what woke me up)... that then lands in a full-blown headache on either side/or both of my forehead.
As I read of others experiences, I realize I am fortunate that my headaches will leave shortly after becoming upright, either sitting or standing. (Intially, it only took 5-10 minutes. Now, it usually takes 15-30.)
I know that the lack of sleep and brain 'trauma' has likely already taken years from my life so I wouldn't benefit much if a cause is found. But if I could help prevent someone else from going through this, it would very much be worth the trouble.