Chronic severe nocturnal hypnic headaches
I am looking for anyone else who has been diagnosed and treated for chronic, severe nocturnal hypnic headaches. I have had them for about 12 years, and on treatment, but not optimal treatment. I am interested in hearing how others with this rare diagnosis are being told to treat them safely.
My headaches are retro ocular do you know of any other patients out there complaining of retro ocular pain
I don't know that there are any recent treatments that help hypnic headaches. I think the standards are caffeine, tablet or cup of coffee, before bedtime, not after you have the headache. Also, melatonin and gabapentin are often used as is lithium. I am not aware of anything else. I have read everything I can find regarding hypnics, not that there is a lot. Also, I think it is unlikely you will find a doctor who has treated a lot of us in his/her career. There just are not that many of us. When you have them on a nightly basis it is absolutely exhausting, also it hardly makes you want to go to bed because you wonder how long you get to sleep before the "bang" of the hypnic comes. Try having a cup of coffee before bed, not after you get the headache. Have you tried melatonin? If so, how much? The standard dose for someone using melatonin seems to be 3 mg. That might be a good starting point, but you can certainly go up from there. That amount might have little, if any effect on your hypnics. Good luck. You are not alone.
Anybody have experience with retro ocular hypnic headaches?
Let me first start by saying that I have NDPH, not migraines. So my use of Aimovig was more of a hail-mary, last-ditch attempt to find anything that might work. I was approved for 3 months of use, and my third month was a double dose. It made absolutely NO difference in the severity of my constant headache. So sadly, that is the end of that. Aimovig has now been added to the long list of pharmaceuticals that have no positive effect on my NDPH. I read on NDPHresearch.org that some people were getting relief after 6 months on the drug, but I was never able to get more info from that organization. My neurologist said that if I didn't get relief in 3 months, there's no reason why 6 would be better – something about how the drug works, I think. So, back to the drawing board.
Since I’ve read a few people experienced temporary reprieves from the Hypnic headaches, I remain cautiously optimistic since I haven’t had one since 22 December after finishing a hefty round of Prednisone. I’ve been able to eliminate melatonin and caffeine before bed. I still take only 25mg of Amitryptiline nightly. Praying you find some relief. Would love a better understanding of why they occur in the first place.
I have tried Amy bag it stopped working after 2 months I've tried caffeine that doesn't work I tried to mail it to intoning that doesn't work I tried verapamil that doesn't work I've tried topamax. Doesn't work Demerol morphine Dilaudid Percocet darvocet does it work nothing prevents these headaches and only imitrex takes them away insomnia has set in Ben insomniac for 4 years hallucinations have played me due to sleep deprivation suicidal thoughts aggravation irritation and all the health effects that come with sleep deprivation why can't we find a doctor that can help
I understand Amovig stopped working after 2 months verapamil topamax Percocet Dilaudid morphine Demerol melatonin caffeine pills none of that worked.I suffer from sleep deprivation for 4 years now hallucinations suicidal thoughts irritation aggravation depression the fact that I can't find a doctor that knows how to treat these headaches very discouraging your body gets to where it doesn't want to go to sleep and if I do get to sleep I just don't want to wake up because you wake up in pain but if you tell somebody that they want to put you in a psych ward why can't we find a doctor that's experienced with these headaches there's got to be somebody out there
It's something during my sleep cycle I don't know what triggers it I just know I wake up 2 hours after going to sleep with extreme eye pain caffeine doesn't help verapamil didn't work topamax didn't work aimovig stopped working after 2 months
That's what happened to me after 2 months double dosing aimovig it stopped working so I guess we're just screwed huh?
I've tried melatonin verapamil topamax caffeine lithium no positive results aimovig stopped after 2 months I even take three sleep aids due to sleep deprivation the headaches burn through those as well there's there's got to be somebody out there that can help the eye pain I wake up with is excruciating I'm not saying I'm suicidal I'm just saying I understand you get to where you just want to go to sleep and not wake up
Can you help me find a doctor that's experienced in treating retro ocular nocturnal hypnic headaches?
Lisa I'm new to this and confused how to properly reply I'm looking for either a doctor that has experienced with treating patients with retro ocular nocturnal hypnic headaches or even a patient that has experienced retro ocular behind the eyes hypnic nocturnal headaches and 17 years I have yet to meet somebody that says I know that pain you feel in your eyes and I can relate I can't be the only one