Chronic severe nocturnal hypnic headaches

Hi, @timpowell84 - We've had a few other members mention using erenumab (Aimovig), like @hedjhog @msb18 @gothope @laluzhiker @quazar. I'd invite them to share any experiences using this medication for headache.

@timpowell84 - have you tried taking erenumab (Aimovig)? If so, has it made a difference with the severe nocturnal hypnic headaches?

Hi I will be taking my 4 th dose in about 2 weeks and so far it’s going well, migraines have been better, less frequent and less severe. I do have slight headaches ... but , tolerable... I do take topamax for prevention and fioracet and promethazine they also have helped me with them as well. I’m pretty excited thus far , life with aimovig is better than before this medicine only downfall is my insurance doesn’t cover it and after my free year not sure what will happen:( I’m staying focused and positive! And enjoying my life day to day for now and prayers for low and hopefully less migraine life .... #gothope

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!!!

Hi, cherylsd, @taterjoy, @kdubois@lauriedr @teege1 @lisafl @dawn_giacabazi @jals. All of you have mentioned experiencing headaches at various times on Mayo Clinic Connect. Just wanted to check in with you and see how things are going with your headaches recently?

Hi I recently started posting and reading on Mayo clinic connect it seems most of the posts are 2 years or older do you know of any recent treatments or can you refer me to a doctor that's an expert on hypnic headaches I have yet to meet a doctor that has another patient with my symptoms please help me

Hi, cherylsd, @taterjoy, @kdubois@lauriedr @teege1 @lisafl @dawn_giacabazi @jals. All of you have mentioned experiencing headaches at various times on Mayo Clinic Connect. Just wanted to check in with you and see how things are going with your headaches recently?

Hi, @timpowell84 - We've had a few other members mention using erenumab (Aimovig), like @hedjhog @msb18 @gothope @laluzhiker @quazar. I'd invite them to share any experiences using this medication for headache.

@timpowell84 - have you tried taking erenumab (Aimovig)? If so, has it made a difference with the severe nocturnal 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.

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.