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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.
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Our internet service was off for 18 hours, is still sporadic. I was wondering what meds you have tried thus far? My first local Headache specialist had me do trials on many prescription drugs prior to prescribing indomethacin. Also, have you tried drinking coffee about 30-60 minutes prior to bed time? Some people with hypnic headaches prevent the onset of their nocturnal headaches by taking caffiene tablets or drining coffee PRIOR to bedtime. I'm not a physician and don't know what dose to suggest, but later tonight I will try to find some articles about "preventative" use of caffience (rather than using is for acute treatment of an in-progress headache). Are your headaches waking you up multiple times pernight? I charted mine, and the four nightly headaches occured at the same times every night (apparently during Rem sleep cycles). The fourth always occured around 4:35am each night/morning. It was unbearable. Not any more, except maybe 1-2 nights per month (not every night like before!). I hope better days and nights are ahead for you.
Thanks! Never h’aches before start of h’ache while sleeping. None of those meds or supplements have helped. Caffeine is only thing that helps during h’ache.
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3 ReactionsHi akalsas! I am so sorry you are having issues and need urgent advice. I experience severe nocturnal headaches four times nightly unless I take preventative meds (Indomethacin 50mg spit dose, melatonin 30mg nightly, 3/4 cup coffee 1-2 hours prior to bedtime. They were accompanied by severe chronic nausea and weight loss. I believe my local neuro checked my cortisol levels but I don't think melatonin was "checked." My Mayo Headache specialst (neurologist) had me add melotonin to my current regimen as a "trial" and it has helped to a degree. If you are loosing sleep, please be aware that there is a condition called Sleep Psychosis that can occur if you go without sleep for many nights in a row. I have not experienced that, but I know someone who did. What are your symptoms, and what type of physician are you seeking help from? Also, do you also suffer from headaches of any type (including migraines?)? My undertreated migraines were contributing to the intensity of my night nocturnal inflammatory headaches that act like Cluster headaches but do not fit that category or the new definition of Hypnic headaches. I hope you can find relief. Please reach out to me privately if needed. If you are depressed or feeling defeated, please reach out to a mental health professional if you are able to.
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3 Reactions@akalsas, I see that this issue of headaches while sleeping continues to disrupt your life and that you haven't found answers. To help connect you with others who experience nocturnal headaches, I moved your message to this existing discussion that @taterjoy started:
Chronic severe nocturnal hypnic headaches https://connect.mayoclinic.org/discussion/chronic-severe-nocturnal-hypnic-headaches/
Recently @taterjoy shared this encouraging update https://connect.mayoclinic.org/comment/729668/
Akalsas, Have you been diagnosed with hypnic headaches? Are you a candidate to try Indomethacin? Have you tried lithium? Flunarizine? or Topirimate? or Verapamil?
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4 ReactionsNeed any help to work with this problem. Feeling disparate
When did the headaches come back? After you discontinued estrogen? What other hormones were you taking that helped? I have nightly headaches that seemed to disappear when I tried estrogen/testosterone and progesterone. However, the estrogen gave me diverticulosis/diverticulitis - which I thought was a very unpleasant side effect. I stopped the hormones and the nightly headaches came back.
Thank you for letting us know!
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1 ReactionI see that it is against the rules to post your email publicly. Feel free to write to me in the private message portal here on Mayo Clinic Connect. I also forgot to mention that I am now taking (in addition to indomethacin and coffee nightly) 30mgs of melaonin. My Mayo MD had me start at 3mg and work my way up to 30mg over a two month period to try it. I do believe it takes the edge off my nocturnal inflammatory headaches. Though melatonin is over-the-counter, it is a drug that can affect hormones, so I would discuss with your physican prior to trying it and pushing the dose that high. I hope you can find something that helps improve your nights and your quality of life.
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1 ReactionFor your privacy and security we suggest members use the private message feature of Connect to share personal contact information.
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1 ReactionIf it's not against the rules I will put my email on my next post
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3 Reactions