Chronic severe nocturnal hypnic headaches

It’s now a week and a day after 31 Botox shots for Hypnic Headaches and so far no pain and sleeping thru night except for bathroom visits…Wow!!!,I hope this continues..

Thank you for sharing your progress with the Botox.

All....I'm still not sure where my responses are landing but just want to mention as someone who has had
Hypnic Headaches for six years and exhausted from taking medications, I have now had my second round of Botox treatments. 31 needles injected into my forehead, head, side of head and back of head. The first time wasn't very successful and am told the Botox gets more effective with every round. Had my second round on Nov. 4, 2025 and by the second day have now slept thru the night for the last two days.....that doesn't mean much to me right now. Hoping to see at least a week to feel this procedure may work. Don't want to live meds at night. Have resisted thus far any kind of daily medication because of side effects.

@taterjoy @cherylsd
Hello All…I am new to this groupi andfound this discussion cruising thru Mayo’s group.
I am a 83 year old woman living in NYC..since 2019 i’ve been having Hypnic Headaches….prior to then, i’ve been suffering with Trigeminal pain caused by a dentist… one night in 2019 the trigeminal pain changed and shot to the middle of my forehead. The pain was intense and I ended up taking 40 mg of prednisone the next day I went for a checkup at my oncologist. I describe to her what it happened and she immediately had me go home to call up another hospital to get an appointment with a specialist. She thought perhaps I might have had “Large Cell Arthritis.” A illness that would cause me to have a stroke, go blind, and probably die!!! long story short I happened to get the right specialist who was studying this particular illness and was rushed into surgery to have a procedure on the side of my head, where a sample of the artery was taken. Turns out I did not have the dreadful illness, but they didn’t know what I had!!! so much for the Medical world…. I started to see a neurologist who also didn’t understand what I had but put me on Fiorcet…I loved Fiorcet.. Wake up in middle of night, take pill and within 30 minutes pain would stop and i would fall back to sleep… No side effects at all.. then i went to a new Neurologist. somewhere along the line, my trigeminal neuralgia came back and now I was having two different kinds of pain. I would take either prednisone or Fiorcet depending upon the pain. after a while, my neurologist decided that I did not have any kind of migraines, but more something related to headaches. I ended up at the headache division at Weil Cornell Hospital in New York City. My own research led me to realize that I have something called Hypnic Headaches. I am sure my doctor is good but he’s big on pushing pills. I’ve tried several kind, but they’re all related to migraines and did nothing for me except to make me nauseous and or sleepy. Further, my own research brought me to a procedure for my trigeminal pain he knew nothing about. I found out about a procedure through the Mayo Clinic. The procedure for nerve pain is called Scrambler Therapy….however, that’s another story. At this point in time, I just completed my second round of 31 Botox injections into my forehead, face and back of head. I am told that the Botox procedure gets better with every episode. I will be doing this every three months. I have also switched over to Rizatriptan for the headaches as I seem to have built up a resistance to the Fiorcet… most times the rizatriptan works, but occasionally I might have to take a repeat dose. all I know about hypnic headaches is that it has something to do with a malfunctioning hypothalamus, the melatonin and circadian rhythm. Obviously not much is known about it, but I am glad to have found others that have the same problem. i’ve tried taking melatonin, but it didn’t do much and it made me feel worse the next day. I also tried changing my sleep habits, but that doesn’t seem to have any effect either. And yes, i’ve always been a coffee drinker and drink a lot of it throughout the day in the evening. And I did read about taking caffeine before going to sleep. I have a cup of coffee on my nightstand and when I wake up during the night either from pain or to go to the bathroom, I drink my coffee. So let’s keep sharing what we know and maybe we will find an answer on our own..

ai also have been dealing withHypnic Headaches since 2019..most daily meds offered were for migraines and i could not tolerate side effects. My go to med has been Fiorcet…the pill worked very quickly for me and i was able to fall back to sleep with no problem… I have currently built up a resistance to Fiorcet and at advice of my Neurologist started the Botox program…31 injections every 3 months…i just had my second round… The first robs wasn’t so successful, but I am told each round gets better and better. I have a secondary pain problem from trigeminal nerve pain and recently because of my own research, discovered a wonderful nerve pain procedure that is non invasive and not painful and it’s actually working. unfortunately, it doesn’t apply to the headaches. I’m going to stick with the botox for the time being. In the meantime, if I wake up at night from pain, I take a 5 mg rizatriptan, which seems to work for me. I am also researching various vagus nerve devices to see if that would help. One more device to consider that I am using is something called The Vibe by Resona. It is a PEMF portable device that I like using as a sort of preventive. Will keep you updated

Thanks for the feedback. She believes in hypnic headaches just doesn’t think what I’m experiencing is that. She says cluster because the severity and description of the headaches. I haven’t woken up with an episode since August 4th. Haven’t woken to a bad headache since I started the preventative either. I’m hopeful I’m in the right hands. I feel I am. I go back in a couple of weeks to address everything.

You can also view the other articles by this doc. She is a headache specialist. There is a newsletter to which you can subscribe.
I never know where some helpful information can come from. I’ll take all the sources I can find. I learned about hypnic headaches online.

Found this link clear and helpful. https://www.migraineagain.com/hypnic-headache-nighttime-attacks/

Interesting outcome from your visit.
I’ve been taking verapamil extended release tabs at 180 for years for migraine prevention.
When my headaches became chronic daily I was upped to 240.
My NP says they are rebound headaches from and suggested steroids to break the rebound cycle. It didn’t work long term.
My morning headaches go away with Imitrex tabs and coffee and a cold gel pac.. Imitrex has always worked for my headaches.
I have tried Nurtec but it was not effective.
I believe I have hypnic headaches but I am seeing Dr. Gordon in Charlotte in October. He is recommended by a good friend as was dr. Sacco.
I think we each have individual headache experiences. I hope you have found a way to minimize your pain.

Wow, that was a loaded appt. I'm so glad she listened well and immediately tried to break this pattern. I hope the injects (nurtec and immitrex) helped your daytime headache and that the prednisone and helps your inflammatory clusters acutely and that Verapamil will prevent them. That would-be incredible . That drug has been documented to help a handful of people who have "hypnic" headaches, though an antiseizure drug and Indocin were more often effective.

Its interesting that she does not believe in Hypnic headaches, and categorizes the nocturnal "pattern" with clusters. My Mayo neuro felt I fit into the category Hypnic when it was first recognized as a headache type, but not after the definition changed to EXCLUDE some of the symptoms that were cluster like (such as extreme lacrimation, runny nose, vomiting, diarrhea. etc.

My nocturnal headaches occurred 4 times each night (for several years before starting Indomethacin) at almost exactly the same times. The 4th headache each night occurred ALWAYS between 4:30am and 4:34 am. And they got progressive worse through the night such that the last one was so potent I jumped out of sleep often screaming and had to jump to a standing position. I honestly thought my head was going to explode, or my eyes pop off and ears pop off. I would pace for hours holding my ears and eyes, not able to sit or stand or the pressure was much worse. Then very sick at stomach (often diarrhea) and nauseated for days on end until it became chronic nausea. A pharmacist called my MD and suggested an anti-nausea (patch for cancer patients on chemo) and I wore those for years so that I could eat.

Well I hope the worst of your episodes are now in the past. I hope your body will tolerate all the meds she gave you and that they will all be effective. My mayo MD was very hesitant to prescribe verapamil for me(as was the specialist who diagnosed my "hypnic" headaches. My normal blood pressure is very low like 80/50 or so and they worried it would go so low I might have a high risk of fainting and falling. I wish I could still see Dr. Wheally at Mayo but Mayo no longer lets their MD "see" patients who insurance does not cover their visits. I was self-pay and would gladly self-pay again to see him or do zoom visits which he did after my initial visit/evaluation with him in Rochester.

I hope you rest well tonight and that your headaches might disappear, both daytime and nocturnal!