Chronic severe nocturnal hypnic headaches

Hi everyone, I noticed most of this discussion is from a year or more ago, but I stumbled across it while researching something that may help my son. It actually took a while for it to occur to me that it was odd that his headaches literally ONLY strike at night while he is sleeping. We have called them migraines, and I just assumed they only came at night. Now I see that they're called something else entirely. The reason I finally realized it was odd is that he started having them so frequently. He is only 17 though, and I understand the onset is always much older, so that is very odd. He first started having them about 2 years ago and then they stopped for a year, and now they are back with a vengeance. He had a MRI 2 years ago and everything checked out normal. His usually hit around 5:30 a.m., though one hit the other night at 1:30 a.m. He did have one after a nap the other day when he wasn't feeling well, but that's the only time that has happened. He has had them "come back" thru-out the day when medicine wears off, but they always strike between 4-5:30'ish. I've recently started giving him Excedrin or goody's powder, and those work better than anything else, though I'll also give him 2 advil if it's still hurting. I'm not comfortable putting him on any preventative prescription, he's still growing and there are just so many side effects. I do have migraines and take Trokendi XR (derivative of Topamax). He saw a chiropractor recently for 7 sessions and we felt like that was helping. They could tell his neck near the base of his head had some issues, the nerves on one side were essentially numb (I'm not using the technical words). He's an athlete and the chiropractor said as the season gets started, he will likely improve some as well, but the adjustments also should help. He said we could need some maintenance but he's hoping that helped. He's had 2 since we stopped. I read that melatonin can help? I also read that caffeine can help and I'm not sure how much would be ideal for a 17 year old, but for those of you using caffeine, I'd like to know if it impacts your sleep? I realize it may be worth it to avoid the headache, but I'd still like to know if it's keeping you awake or causing you to wake up? It seems he is at a very different stage of life than a lot of you, so he may be impacted by it very differently, but since he has to get up for school every morning, I hate to keep him up half the night with caffeine 🙂 I also think lack of sleep may give him a headache sometimes? I'm sure hormones plays into it as well. I'm so sorry that you all are suffering with this and discouraged that it's been so long for all of you...

HI Colleen, thankyou for your rapid response and suggestion. I read Dr. Swansons summary years ago, and have tried all of the treatments listed (one by one, and in combinations). I have been taking Indomethacin preventatively now for nine years nightly exactly two hours before bedtime and I drink coffee before bedtime as well. I take a medication to prevent stomach ulcers also. I have tried others listed with it (lithium, Depakote). Before the diagnosis of Hypnic headaches and use of indomethacin, I was waking up 4 times nightly, cyclically at the same tiems each night, with a severe inflammatory headache. I basically woke up and had to quickly stand, grab my head, and pace for hours crying. I could not sit or lie down, and usually ended up throwing up after hours of pacing and being so fatiqued I could no longer stand. Prevention with Indomethacin has helped me more than other remedies, but it too fails from time to time, and many mornings I awaken with a mild hypnic headache despite preventative treatment.

The main issues I have is periods of abdominal severe irritation with Indomethacin (I then take Carafate when acute), and I would say on average, the indomethacin fails at least 1-2 times per month, in which case I inject Toradol in the middle of the night (to avoid the ER), and take frovatriptan and ondansetron with it. If all else fails, I end up at the ER (about once every 2 years in recent years--it used to be more often). The diagnoses are Hypnic headaches, cluster headaches, and hormonal migraines (cyclically). I used to wear a Sancuso patch 24/7 to help prevent vomiting all night and ending up at the ER, but my vomiting is under better control now. The Narcotic that was prescribed historically (Stadol) made me violently sick (vomiting and diarreah). I have had about 3 brain scans over the years due to the violent intensity of the headaches upon waking; all showed no tumors.

All in all, I have tried about 40 meds and/or combinations of meds over the years to control hormonal migraines, hypnic headaches, and cluster headaches. I believe the hormonal migraine headaches are related to diagnoses of PCOS (for which I have used strict diet, exercise, and weight control since I was 20 years old) and hashimotos thyroiditis with hypothyroidism. Before treatment with Synthroid begun in 2002, my headaches were chronic daily headaches. I also have two endocrine related allergies. In the past I was patient of two specialists at Jefferson Headache Center in Philadelphia, PA;, and also have seen a specialist in North Carolina (Charlotte area); and one in San Francisco most recently (I live in CA now). This San Fran. Specialist diagnosed Hypnic headaches in 2007 after about 5 months, having me on about 7 different meds prior to diagnosis; but after a few months, his advice became bizarre and unhelpful.

Despite how this sounds, I am otherwise healthy. I eat healthfully, my weight is kept around 110 (5'5") and I exercise daily. All vital signs and cholesterol values are normal.

I would love to hear from those have tagged in hopes that they may know other patients with recalcitrant hypnic headaches to learn what they are doing, and what might work. I have been a part of an internet international Support Group for headaches moderated by Teri Roberts for over 30 years, and have not met even one patient yet with hypnic headaches. Thank you so much for replying to my comment!

Very happy to see that Mayo set up Mayo Connect! Thanks again for your help Collen!!!

Thanks for your insight. Tried caffeine before bed and multiply other supplements as well as meds which caused side effects. My h’aches are ever changing , at different times of the night, from mild to intense, have tried acupuncture, chiro, direct electrical modulation , message , now using cft ( jury out if any help with h’aches but great for loosing my movements ). Have you read re the glymphatic system of the brain? Researching if this would be cause of problem. Must praise the Lord that this was the first morning in weeks that I awoke naturally after a night of 2 h’aches.

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.

Hi 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.

Need any help to work with this problem. Feeling disparate

Need any help to work with this problem. Feeling disparate

Has anyone had their cortisol and melatonin levels checked? If so, did it help in relief.

Yes, I do experience these headaches. I haven't posted for several months, though, because I thought I had found a cure in the hormone supplements I was taking. These hormones have lots of unpleasant side effects in addition to gradually becoming less effective against my headaches. That why I was interested in learning more about the nerve block.