Chronic severe nocturnal hypnic headaches

Have tried caffeine at bedtime but it never helped. Caffeine at onset has helped but now am wondering if my body is either causing side effects from caffeine or the after effects of the h’ache. Will do trial without caffeine. Thanks for your concern and reply. This is the first place that I have found others with similar symptoms and empahy

I wish there was something I could do take that would eliminate my headaches. I cannot drink coffee. I have had migraines for 22 years. When I get up[ to do something at night and am having a migraine my gait is staggering. Sometimes they awaken me and the room is whirling. I must sit it an upright position and put my head down for a while to get rid of that feeling. I am tired all day because of mine. Has anyone else noticed this? If I have one in the morning after I get up when I get tired my vision suddenly gets double and I can get staggering gait. I have atypical migraines. Does anyone have atypical migraines? All medications and chiropractic have failed.

@akalsas
Hi and welcome to Mayo Connect. So you have night headaches as well which affect your sleep? I can't imagine having to deal with headaches that interfere with sleep for 15 years! My heart goes out to you.

I notice that others have mentioned drinking coffee before bedtime has helped them with this problem. Caffeine at that time sounds counterintuitive but it's interesting that for this problem it can be helpful. You mentioned several other treatments you have tried as well. Have any of them been helpful? Has your chiropractor had any new suggestions?

I hope you have read through all the posts in this discussion (and other discussion related to headaches). One can often find lots of useful tips and tricks that way. Not to mention how others deal with similar problems.

Best, Hank

Have had he for 15 yrs and severity and frequency increasing. Unable to use prescription meds. Using caffeine at onset, Pemf, Reflectology, massage and now trying chiropathic.

Have had he for 15 yrs and severity and frequency increasing. Unable to use prescription meds. Using caffeine at onset, Pemf, Reflectology, massage and now trying chiropathic.

I’m in bed right now awake at 3:45 am waiting for a horrible hypnic headache to pass. The pain is extreme and I know everyone here understands completely. I have taken my caffeine and am waiting patiently and trying not to cry. This has been happening now every single night for weeks and each week the pain ratchets up a notch. The neurologists at my regional Headache Clinic confirm that this is hypnic headache although sometimes a migraine piggybacks on it. While caffeine and Imitrex eventually help, taking them every night has destroyed my waking life too since after taking caffeine I’m wide awake and grinding my teeth for the next four hours. This cycle happens every single day. Excruciating pain followed by upset stomach ,
drowsiness and depression. If this is my new normal then it’s time to research suicide because this quality of life is not sustainable for me. I’ll obviously think hard and consult a psychiatric specialist before taking any kind of action but if this severe daily pain is a permanent condition I don’t want to grind on for decades. I can’t imagine what it would be like to have this unbearable pain and also suffer from dementia. It could explain the patients screaming in nursing homes. Perhaps they are in the middle of a horrific migraine and no one knows or cares. I watched my beautiful mother—a triathlete who developed Alzheimer’s — weeping and thrashing in her bed, unable to speak and clearly suffering. The nursing staff couldn’t figure out what she was experiencing so just gave her Ambien. But what if it was acute migraine? Please god no one should suffer like that. Being trapped in this pain with no hope or help is my deepest fear. Doctors are sympathetic but in the end they DON’T know how you feel and can go home and forget about you. Which of course they do. It’s human nature. I’m realizing that ultimately the reality of a life dominated by pain will not be sustainable for me. Lots to think about.

Lisa they changed the names of these headaches over the years and misdiagnosed them for years started off with migraines then it went to clusters then it went to retro ocular then it went to hypnic headache I don't think anybody knows what to call itI call it excruciating eyeball pain that wakes me up at the same time each night I have them causing sleep deprivation and all the ill effects that comes with it including hallucinations aggravation suicidal thoughts depression I'm looking for somebody who knows how to treat eyeball pain and feels like somebody's pushing on my eyeballs from the inside

@taterjoy Thanks for the info, I will pass it on to my daughter. When she is miserable she often calls me because since I went through it too she knows I will understand. I was ecstatic when I went through menopause (late) and finally my migraines were history.
JK