Chronic severe nocturnal hypnic headaches

Posted by taterjoy @taterjoy, Aug 29, 2016

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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@johnbishop

Hello @timpowell84, welcome to Mayo Clinic Connect. I can't begin to imagine how hard it must be to deal with chronic hypnic headaches for 17+ years. Have your doctors been able to offer any kind of help?

Here is an earlier post that provides some information about the hypnic headaches. It may be helpful to read through.
https://connect.mayoclinic.org/discussion/chronic-severe-nocturnal-hypnic-headaches/?pg=3#comment-246729

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I've tried verapamil topamax caffeine cup of coffee caffeine tablets none of that works verapamil and topamax just made me pass out a lot I have low blood pressure as it I'm a skydiver and I can't be passing out every time I stand up to leave the plane bad things would happen

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@so4tune8

Hello. I’m new here and have been taking in the great conversations of this sight. But on this subject I had to reply. Migraines were a continual fact of my life. I have tried so many of the therapies mentioned on this thread. Some of the triptans were somewhat helpful but never totally successful. I had a course of Sphenopalatine Ganglion Blocks, Botox, but nothing worked. Somehow they eventually turned into “alarm clock” (hypnic) headaches. I was prescribed Verapamil but this caused heart issues.
I then moved to Atlanta and started going to Emory. I found a solution. They gave me a “Greater Occipital Nerve Block”. This isn’t a cure but a relief. I received 2 shots in the back of my neck where the Occipital nerves begin and spread across the brain. I HAVE NOT HAD A HEADACHE SINCE!!

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When you had your headaches where were they what part of your head mine are behind my eyes

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@patiencepie

I’m in bed right now awake at 3:45 am waiting for a horrible hypnic headache to pass. The pain is extreme and I know everyone here understands completely. I have taken my caffeine and am waiting patiently and trying not to cry. This has been happening now every single night for weeks and each week the pain ratchets up a notch. The neurologists at my regional Headache Clinic confirm that this is hypnic headache although sometimes a migraine piggybacks on it. While caffeine and Imitrex eventually help, taking them every night has destroyed my waking life too since after taking caffeine I’m wide awake and grinding my teeth for the next four hours. This cycle happens every single day. Excruciating pain followed by upset stomach ,
drowsiness and depression. If this is my new normal then it’s time to research suicide because this quality of life is not sustainable for me. I’ll obviously think hard and consult a psychiatric specialist before taking any kind of action but if this severe daily pain is a permanent condition I don’t want to grind on for decades. I can’t imagine what it would be like to have this unbearable pain and also suffer from dementia. It could explain the patients screaming in nursing homes. Perhaps they are in the middle of a horrific migraine and no one knows or cares. I watched my beautiful mother—a triathlete who developed Alzheimer’s — weeping and thrashing in her bed, unable to speak and clearly suffering. The nursing staff couldn’t figure out what she was experiencing so just gave her Ambien. But what if it was acute migraine? Please god no one should suffer like that. Being trapped in this pain with no hope or help is my deepest fear. Doctors are sympathetic but in the end they DON’T know how you feel and can go home and forget about you. Which of course they do. It’s human nature. I’m realizing that ultimately the reality of a life dominated by pain will not be sustainable for me. Lots to think about.

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I understand completely about the suicidal thoughts then you go see the doctor and if you tell them how you're feeling and all they want to do is put you in a psych ward and put you on psych medicine that doesn't stop the pain

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@johnbishop

Hello @timpowell84, welcome to Mayo Clinic Connect. I can't begin to imagine how hard it must be to deal with chronic hypnic headaches for 17+ years. Have your doctors been able to offer any kind of help?

Here is an earlier post that provides some information about the hypnic headaches. It may be helpful to read through.
https://connect.mayoclinic.org/discussion/chronic-severe-nocturnal-hypnic-headaches/?pg=3#comment-246729

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My pain is retro ocular it's behind my eyes no other place but my eyes do you know any person with that exact symptom?

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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

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@lisalucier

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?

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@lisalucier and all, as it seems as if the same medications are used for hypnic headaches as for migraine, I asked “my expert” (daughter) about her medications.
She gets the most help from naratriptan, which is a triptan as is imitrix in type (both triptans) but they are different from each other. Imitrix knocks her out.
Barometric pressure changes are a common trigger and she has two apps that alert her to those changes. Sometimes a headache can be stopped before it really takes hold.
When I was much younger and suffered from migraines the best they could do was prescribing an ergot medication to constrict your blood vessels. That made me so sick it was worse than the headache.
I wish she had time to participate in some of these forums but she is pretty out-straight with her job.
JK

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@gothope

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

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@gothope I’m really happy for you that your medication is helping. When you feel better your whole world is better.
JK

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@taterjoy

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!!!

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Where are your headaches my headaches retrooccular they behind the eyes they wake me up about two hours after I go to sleep

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@lisalucier

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?

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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

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My headaches are retro ocular do you know of any other patients out there complaining of retro ocular pain

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@timpowell84

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

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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.

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@lisalucier

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?

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Anybody have experience with retro ocular hypnic headaches?

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@lisalucier

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?

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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.

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@quazar

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.

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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.

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@quazar

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.

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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

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