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Chronic severe nocturnal hypnic headaches
Sleep Health | Last Active: Sep 26, 2023 | Replies (239)Comment receiving replies
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.
Replies to "Unfortunately, estrogen is not the answer. I keep praying that something will trigger these skull crushing..."
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.
@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
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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?