Want to connect with people dealing with hypnic 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 @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?

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.

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.

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.

I’m new to this site and believe I have Hypnic Headaches but none of the various Specialists have ever used that diagnosis. I didn’t realize anyone else was woken up at the same time in severe pain and had to get up. I cant lie on my pillow because it is too painful. Hence I get up, take oxycodone, eat a few
crackers, drink milk to protect my stomach and walk around. Often I’ll do very light tasks as the pain subsides. I’m up for 1-1:30hrs. Before I can lie on the soft pillow again.
I’m going to try the 100mg caffeine tablets instead of Oxy. How many is usually effective? Thanks

The caffeine in my case didn't give any kind of result. I made several attempts even going beyond 100mg. It is still a test to be done absolutely, it is one of the first attempts that the neurologists made me do, I hope that in your case it will help you.