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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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shaylala | @shaylala | Nov 29, 2018
In reply to @shaylala "I am a 62 year old female in otherwise excellent health at 5’5”, 120lbs. I exercise..." + (show)
@shaylala

I am a 62 year old female in otherwise excellent health at 5’5”, 120lbs. I exercise regularly and have a decent diet. I began experiencing hypnic headaches the end of August 2018. They began waking me every few nights with severe pain in left side of head only. I tried Zomig which I have on hand for occasional migraines but it did nothing. I would sit and hold an ice pack to my head for hours, and start drinking coffee. Doctor put me on Amitriptyline and scheduled an MRI but couldn’t get in for weeks. She also prescribed a strong pain med that didn’t help. They got so severe after the first few weeks and woke me every night about 2:30 that we finally went to the emergency room. They did 3 different MRI’s and a CAT scan which ruled out our worst fears. Met with neurologists, and luckily found this post one night while up with pain and desperately seeking answers. My neurologist confirmed the Hypnic headache classification. I began taking Melatonin, along with Amitriptyline which disrupted the regularity of the headaches but did not stop them. Found caffeine and exedrin migraine help the pain per suggestions found here. The neurologist added Topomax as a preventative. Although the headaches became less frequent and somewhat less severe, the side effects of the medication left me shaky, cloudy thinking, and feeling pretty awful most of the time. I went to a chiropractor too since I do have back and neck issues, and while he helped those issues it had no effect on the headaches. However, I had discontinued estrogen therapy several months ago and thought this could be related. After having a hysterectomy at 52, I had started bio-identical estrogen therapy which greatly reduced the number of migraines I was getting pre-menopausal. I started estrogen patches at a lower dose last week and began weaning myself off the other meds. I haven’t been awakened by a headache since and am down to 5mg Melatonin (from 12mg) completely off the Topomax and only took 1/4 of the 50mg Amitriptyline last night. I feel so much better today I’m beside myself. I will keep you posted if anything changes. I wanted to share this since your suggestions helped me through such a terrible and frightening time.

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Unfortunately, estrogen is not the answer. I keep praying that something will trigger these skull crushing headaches to cease as mysteriously as they began. I do feel better from discontinuing the Amitriptyline and Topomax. While they seemed to reduce the severity and frequency, the side effects weren’t tolerable. Seems bizarre that the pain is more crushing than any other migraine I ever had and that no narcotic thrown at it seemed to help, but excedrin migraine does reduce the pain and occasionally stop it altogether. The hours without sleep are draining either way. All the caffeine and excedrin are tough on my stomach and bladder. Any ideas and suggestions from other sufferers are appreciated.

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3 replies
Lisa Lucier | @lisalucier | Nov 29, 2018
In reply to @shaylala "Unfortunately, estrogen is not the answer. I keep praying that something will trigger these skull crushing..." + (show)
@shaylala

Unfortunately, estrogen is not the answer. I keep praying that something will trigger these skull crushing headaches to cease as mysteriously as they began. I do feel better from discontinuing the Amitriptyline and Topomax. While they seemed to reduce the severity and frequency, the side effects weren’t tolerable. Seems bizarre that the pain is more crushing than any other migraine I ever had and that no narcotic thrown at it seemed to help, but excedrin migraine does reduce the pain and occasionally stop it altogether. The hours without sleep are draining either way. All the caffeine and excedrin are tough on my stomach and bladder. Any ideas and suggestions from other sufferers are appreciated.

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Hi, @shaylala - welcome to Mayo Clinic Connect. Sounds like your pain is truly horrible -- skull-crushing, as you mentioned. I am glad that some of the posts in this discussion were helpful.

Hoping that @patiencepie @meme59 @so4tune8 @dawn_giacabazi @gussie @cherylsd @lauriedr @kdubois may have some input, since you've found estrogen wasn't the answer for your severe nocturnal hypnic headaches and you've had to discontinue the Amitriptyline and Topiramate (Topomax). @johnbishop may also have some thoughts for you.

@shaylala - have you gotten to ask your doctor what to try next at this point? Is so, what did he or she recommend?

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1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Nov 29, 2018

Hi, @shaylala – I would like to add my welcome to Connect along with Lisa's @lisalucier. I can't imagine being woken from sleep by a headache. I've had migraines in the past but nothing that occurs on a regular basis. I did find a few articles on hypnic headaches but I'm not sure it they are helpful.

NIH - Hints on Diagnosing and Treating Headache
-- https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5974268/

Mayo Clinic Research Output - The hypnic ('alarm clock') headache syndrome
-- https://mayoclinic.pure.elsevier.com/en/publications/the-hypnic-alarm-clock-headache-syndrome

Mayo Clinic Proceedings - Diagnosis and Management of Headache in Older Adults
-- https://www.mayoclinicproceedings.org/article/S0025-6196(17)30871-6/fulltext

Hope you find some answers soon.

John

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shaylala | @shaylala | Nov 29, 2018
In reply to @lisalucier "Hi, @shaylala - welcome to Mayo Clinic Connect. Sounds like your pain is truly horrible --..." + (show)
@lisalucier

Hi, @shaylala - welcome to Mayo Clinic Connect. Sounds like your pain is truly horrible -- skull-crushing, as you mentioned. I am glad that some of the posts in this discussion were helpful.

Hoping that @patiencepie @meme59 @so4tune8 @dawn_giacabazi @gussie @cherylsd @lauriedr @kdubois may have some input, since you've found estrogen wasn't the answer for your severe nocturnal hypnic headaches and you've had to discontinue the Amitriptyline and Topiramate (Topomax). @johnbishop may also have some thoughts for you.

@shaylala - have you gotten to ask your doctor what to try next at this point? Is so, what did he or she recommend?

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Thanks for your comments Lisa. My neurologist is suggesting a round of Prednisone next. She would try the Occipital Nerve Block but my insurance won't cover that...although I'll be asking what it will cost if the Prednisone doesn't help. I was intrigued by leamm @leamm comments on Adenosine. I normally have no difficulty falling asleep and have never been a "morning person", finding it difficult to jump up and get going...so maybe I do have an abundancy of this sleep hormone. I wonder if others with these headaches might, as well.

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2 replies
Lisa Lucier | @lisalucier | Nov 30, 2018
In reply to @shaylala "Thanks for your comments Lisa. My neurologist is suggesting a round of Prednisone next. She would..." + (show)
@shaylala

Thanks for your comments Lisa. My neurologist is suggesting a round of Prednisone next. She would try the Occipital Nerve Block but my insurance won't cover that...although I'll be asking what it will cost if the Prednisone doesn't help. I was intrigued by leamm @leamm comments on Adenosine. I normally have no difficulty falling asleep and have never been a "morning person", finding it difficult to jump up and get going...so maybe I do have an abundancy of this sleep hormone. I wonder if others with these headaches might, as well.

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When will you start the prednisone, @shaylala? It would be great if you could post here about how that goes.

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1 reply
meme59 | @meme59 | Nov 30, 2018
In reply to @shaylala "Unfortunately, estrogen is not the answer. I keep praying that something will trigger these skull crushing..." + (show)
@shaylala

Unfortunately, estrogen is not the answer. I keep praying that something will trigger these skull crushing headaches to cease as mysteriously as they began. I do feel better from discontinuing the Amitriptyline and Topomax. While they seemed to reduce the severity and frequency, the side effects weren’t tolerable. Seems bizarre that the pain is more crushing than any other migraine I ever had and that no narcotic thrown at it seemed to help, but excedrin migraine does reduce the pain and occasionally stop it altogether. The hours without sleep are draining either way. All the caffeine and excedrin are tough on my stomach and bladder. Any ideas and suggestions from other sufferers are appreciated.

Jump to this post

Stop the Excedrin by taking a caffeine pill right away when you feel a headache is coming. I may take it even at 6 pm or 8 if I had a stressed day . I believe the other medicine in Excedrin wore me down and triggers Migraines.All the drugs did.The less I take the better for me. Melatonin can be tricky too.Before I noticed it could even make my migraine worse if I take it after onset of headache.So now I try to get my caffeine pill taken and hour before I take melatonin do it can do it's job better blocking the adenosine.

REPLY
1 reply
JK | @contentandwell | Nov 30, 2018
In reply to @shaylala "Unfortunately, estrogen is not the answer. I keep praying that something will trigger these skull crushing..." + (show)
@shaylala

Unfortunately, estrogen is not the answer. I keep praying that something will trigger these skull crushing headaches to cease as mysteriously as they began. I do feel better from discontinuing the Amitriptyline and Topomax. While they seemed to reduce the severity and frequency, the side effects weren’t tolerable. Seems bizarre that the pain is more crushing than any other migraine I ever had and that no narcotic thrown at it seemed to help, but excedrin migraine does reduce the pain and occasionally stop it altogether. The hours without sleep are draining either way. All the caffeine and excedrin are tough on my stomach and bladder. Any ideas and suggestions from other sufferers are appreciated.

Jump to this post

@shaylala I am sorry to hear you are going through this. I never had hypnic headaches but I had severe migraines, usually once a month for 3 or 4 days, occasionally two times a month. Back then there wasn't anything for them. Imitrex came out near the end of my headaches but I was afraid to try it. My daughter suffers from severe migraines now.
I presume the drugs you mention are more recent improvements since Imitrex came out. I'm really not sure what she uses.
If the headaches can be treated similarly to migraines, there are some new treatments out now. Of course they have been using Botox for a while but there is something newer that is supposed to be even more effective. I could check with my daughter because I don't remember the name of it now. I do not believe it is yet covered by insurance, but when you are in such pain it can be worth it.
I hope you will find a solution, having suffered from migraines for so long I can almost feel your pain.
JK

REPLY
JK | @contentandwell | Nov 30, 2018
In reply to @meme59 "Stop the Excedrin by taking a caffeine pill right away when you feel a headache is..." + (show)
@meme59

Stop the Excedrin by taking a caffeine pill right away when you feel a headache is coming. I may take it even at 6 pm or 8 if I had a stressed day . I believe the other medicine in Excedrin wore me down and triggers Migraines.All the drugs did.The less I take the better for me. Melatonin can be tricky too.Before I noticed it could even make my migraine worse if I take it after onset of headache.So now I try to get my caffeine pill taken and hour before I take melatonin do it can do it's job better blocking the adenosine.

Jump to this post

@meme59 @shaylala When you take headache medications too frequently you have to be very conscious of "rebound headaches" too. Too frequent use of many of these cause this.
JK

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shaylala | @shaylala | Dec 1, 2018
In reply to @lisalucier "When will you start the prednisone, @shaylala? It would be great if you could post here..." + (show)
@lisalucier

When will you start the prednisone, @shaylala? It would be great if you could post here about how that goes.

Jump to this post

@lisalucier I am planning to start the prednisone in about 10 days. Taking a trip with girlfriends and don't want to chance anything new until I'll be back at home. I will update you on that once I've started it.

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1 reply
shaylala | @shaylala | Dec 1, 2018

@meme59, thanks for your advice. I got some caffeine pills today and will use those before bed tonight instead of the excedrin, per your suggestion. I have a very dear friend that's a dean of pharmacology. He told me a long time ago that pain responds better if you don't wait until it's awful to take the meds. Likened it to stopping a car before it starts to roll down the hill. Once it's rolling it's much more difficult to stop. Like these headaches, when they began waking me the pain was already so severe it seemed nothing would help, not even the stuff they added to my IV the night we went to the emergency room. Truly was shocked to discover over the counter meds were helping when I stumbled upon this group. What a blessing you all have been!

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