Chronic severe nocturnal hypnic headaches

Hi @timpowell84. I add my welcome to you. You'll notice that I removed your phone number. Connect is a public forum and we recommend that people not share personal contact information for security reasons. Also, I moved your posts to this existing discussion about hypnic headaches so you can connect with others talking about similar issues, like @jana15 @lwatson612 @meme59 @shaylala and others.

It is unimaginable that you have been suffering from these headaches for 17 years. It must be impossible to function with such sleep deprivation.

My sleep deprivation has been going on for over four years now I take sleep aids but when I have my headaches it burns through them and I still wake up with excruciating eye pain

@timpowell84 Your headaches sound absolutely horrible and debilitating. As a past migraine sufferer, I have to say that this sounds so much worse. It obviously does have similarities though since Imitrex is used for migraines also.
At least you have something that gives you some relief, unlike before these newer drugs were developed.
JK

There is a new medication that FDA just approved in June called Aimovig.ask your Dr about it.just curious when you have your headaches where is the pain.mine is behind the eyes

Hello @timpowell84, welcome to Mayo Clinic Connect. I can't begin to imagine how hard it must be to deal with chronic hypnic headaches for 17+ years. Have your doctors been able to offer any kind of help?

Here is an earlier post that provides some information about the hypnic headaches. It may be helpful to read through.
-- https://connect.mayoclinic.org/discussion/chronic-severe-nocturnal-hypnic-headaches/?pg=3#comment-246729

Hello. I’m new here and have been taking in the great conversations of this sight. But on this subject I had to reply. Migraines were a continual fact of my life. I have tried so many of the therapies mentioned on this thread. Some of the triptans were somewhat helpful but never totally successful. I had a course of Sphenopalatine Ganglion Blocks, Botox, but nothing worked. Somehow they eventually turned into “alarm clock” (hypnic) headaches. I was prescribed Verapamil but this caused heart issues.
I then moved to Atlanta and started going to Emory. I found a solution. They gave me a “Greater Occipital Nerve Block”. This isn’t a cure but a relief. I received 2 shots in the back of my neck where the Occipital nerves begin and spread across the brain. I HAVE NOT HAD A HEADACHE SINCE!!

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.

Hello @timpowell84, welcome to Mayo Clinic Connect. I can't begin to imagine how hard it must be to deal with chronic hypnic headaches for 17+ years. Have your doctors been able to offer any kind of help?

Here is an earlier post that provides some information about the hypnic headaches. It may be helpful to read through.
-- https://connect.mayoclinic.org/discussion/chronic-severe-nocturnal-hypnic-headaches/?pg=3#comment-246729