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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?

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Replies to "Hi @marione2000. Dealing with hypnic headaches all that time sounds like a lot of nights with..."

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 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.