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@marione2000

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..

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Replies to "Hello everyone. I'm part of this club too, I've been suffering from hypnic headaches for over..."

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?