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DiscussionWant to connect with people dealing with hypnic headaches
Headache & Migraine | Last Active: Nov 16 12:03pm | Replies (53)Comment receiving replies
Replies to "Hi @marione2000. Dealing with hypnic headaches all that time sounds like a lot of nights with..."
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.
@lisalucier I’m not sure where to post exactly regarding Hypnic Headaches? I did make two posts to various other people, but please feel free to move my post to wherever they should be. I may be the most recent person to the group of hypnic headaches. All I want to add is that I’ve done the same medication as everyone else and the latest thing I have done is to get 31 shots of Botox to my head forehead, back of head, the neck, etc. to hopefully reduce the amount of head pains I get. The only medicine I am currently using when necessary at night has been rizatriptan. For years, I did take Fiorcet which actually helped and very quickly. I never had any side effects from it. I had to recently stop using it because I built up an immunity to it. now, hoping for success with the Botox shots. My neurologist said that with each round every three months, it becomes more and more effective.
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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.