I am 76 and have had nocturnal headaches for about 12 years. I was one of those people that had migraines starting from my late twenties until I went through menopause. Most of those have stopped unless I'm around strong odors or don't eat on time or drink alcohol. They run in my family. My poor grandson has them now. They were always the same. In my right eye only. Never got nauseated just had to go to bed and suffer until Imitrex came on the scene. Then in 2006 I started waking up with a different headache. Starting at the base of my head and moving like a rams horn to the sides. It woke me up every night at about 4 am. It would get so bad that I would vomit and ended up in the ER on IV dilauded (the drug from hell). The first year I landed in the ER ten times. The was after taking Imitrex and fioraset with codiene. I had been a patient of Dr. Goldstein in San Francisco for many years and he is the first one to mention hypnic headaches. He switched his practice from migraine clinic to testing many illnesses for the drug companies. He really never listened anyway and spends very little time with his patients. I did see other neurologists in the bay area and after just one visit describing the symptoms was told you have hypnic headache. Not until I started reading the letters on this site did I realize that the pain can be so bad. All the other literature I had read said it lasted from 30 minutes to a few hours. Since my pain gets worse and worse and is not self-ending I didn't think I had this. So I have been coping with this by getting up and taking Imitrex almost every night. I also was diagnosed around the same time with a rare condition called CVID. (boy in the bubble disease). The same disease, but not as bad. He had no immune system at all. Part of my immune system doesn't work. So I use the plasma of other peoples antibodies to protect me from infections and viruses because we don't make antibodies from vaccines. I orginally thought maybe the two things were connected somehow. I also thought it might be from something wrong with my neck since it started from the back of my head. I had PT, lidocaine injections and botox injections but really didn't help either. I don't think I have slept through the night in all these years. I also have IBS, which is part of my immune system problems so its taking drugs is always very hard on my stomach. I know this is long, so thank you for letting me vent. It's always helpful when you know you're not alone.
Also finding a neurologist in this area isn't easy.