Chronic severe nocturnal hypnic headaches

Hi, came across this and live in the Charlotte area. Curious who you went to. I believe I may have these headaches. Been happening almost nightly for 2 weeks and it’s the worst headache I’ve ever experienced and in a chronic migraine sufferer. These headaches are not like a migraine except I am nauseous and vomit. No blurred vision. Intense wakes me up out of my sleep. Waiting in mri scans. Ct was clear. Residual headaches the day after that are about a level 7-8 that lingers until the next episode at night. Thanks for your input.

I am so sorry you are dealing with these horrid headaches. They are wretched and defeating. Are you seeing a Neurologist now, and if yes, are they a Headache specialist? Have you been to the ER to manage dehydration from vomiting/diarrhea or intractable pain? I hope and pray your physician is able to isolate a cause, or experiment with a med to treat a potential inflammatory type headache. Please keep a journal as to what time of night they occur, how many times per night, and if the headaches are all the same or progressively worse as the night goes on. The residual the day after also left me with intense nausea and dislike of food odors. Antinausea patches helped calmed the nausea. The night-time headache never responded one iota to any of my migraine treatments. The headache specialist, Dr. Sara E. Sacco I saw in Charlotte is apparently practicing at Carolina's Headache Clinic in nearby Matthews, NC. I looked up her health grade 20 years later and her ratings are still high. I hope she is taking new patients and can help you. If I were in your situation I would definitely seek a headache specialist and beg to be soon ASAP. If your insurance will cover your referral to Mayo clinic you might consider an appointment with specialists who have seen and treated everything. Bring records of your history, your journal and every headache medicine (or other non drug treatment) you have tried and ask if they feel you would benefit from an anti-inflammatory treatment or something else that has been beneficial in treating hypnic headaches (google Hypnic headaches and look at recent Research and analysis of the headache type. Please keep us posted as to what you decide to do, and results of your appointments and treatments. I pray you get some much needed relief from the onslaught of severe pain that is crippling and makes us afraid of going to sleep. Yet the pain is so exhausting as is the resultant dehydration, loss of sleep, and a dire feeling of hopelessness. Feel free to send me a private message via this site if you prefer to talk privately.

I am so sorry you are dealing with these horrid headaches. They are wretched and defeating. Are you seeing a Neurologist now, and if yes, are they a Headache specialist? Have you been to the ER to manage dehydration from vomiting/diarrhea or intractable pain? I hope and pray your physician is able to isolate a cause, or experiment with a med to treat a potential inflammatory type headache. Please keep a journal as to what time of night they occur, how many times per night, and if the headaches are all the same or progressively worse as the night goes on. The residual the day after also left me with intense nausea and dislike of food odors. Antinausea patches helped calmed the nausea. The night-time headache never responded one iota to any of my migraine treatments. The headache specialist, Dr. Sara E. Sacco I saw in Charlotte is apparently practicing at Carolina's Headache Clinic in nearby Matthews, NC. I looked up her health grade 20 years later and her ratings are still high. I hope she is taking new patients and can help you. If I were in your situation I would definitely seek a headache specialist and beg to be soon ASAP. If your insurance will cover your referral to Mayo clinic you might consider an appointment with specialists who have seen and treated everything. Bring records of your history, your journal and every headache medicine (or other non drug treatment) you have tried and ask if they feel you would benefit from an anti-inflammatory treatment or something else that has been beneficial in treating hypnic headaches (google Hypnic headaches and look at recent Research and analysis of the headache type. Please keep us posted as to what you decide to do, and results of your appointments and treatments. I pray you get some much needed relief from the onslaught of severe pain that is crippling and makes us afraid of going to sleep. Yet the pain is so exhausting as is the resultant dehydration, loss of sleep, and a dire feeling of hopelessness. Feel free to send me a private message via this site if you prefer to talk privately.

Hi, came across this and live in the Charlotte area. Curious who you went to. I believe I may have these headaches. Been happening almost nightly for 2 weeks and it’s the worst headache I’ve ever experienced and in a chronic migraine sufferer. These headaches are not like a migraine except I am nauseous and vomit. No blurred vision. Intense wakes me up out of my sleep. Waiting in mri scans. Ct was clear. Residual headaches the day after that are about a level 7-8 that lingers until the next episode at night. Thanks for your input.

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!!!

Yes - I am sure it’s the 65 mgs of caffeine in it that works - only one because with 2 - I can’t sleep.
Like I said they do make aspirin free Excedrin - and I use generic.
I am not a coffee drinker and tea is an inexact science as far as caffeine content. I am 71 and I think I am stuck with the condition for now.
I wish you luck - I know how miserable they make you feel.

Thank you, I will try the excedrin ( migraine?). I also had all the diagnostic tests, cat scan , ct with dye. Neurologist is just guessing and throwing different drugs. I had to ask him to prescribe nurtec. I’m 70 , and it started at 61 after menopause.