Want to connect with people dealing with hypnic headaches

@lisalucier I’m not sure where to post exactly regarding Hypnic Headaches? I did make two posts to various other people, but please feel free to move my post to wherever they should be. I may be the most recent person to the group of hypnic headaches. All I want to add is that I’ve done the same medication as everyone else and the latest thing I have done is to get 31 shots of Botox to my head forehead, back of head, the neck, etc. to hopefully reduce the amount of head pains I get. The only medicine I am currently using when necessary at night has been rizatriptan. For years, I did take Fiorcet which actually helped and very quickly. I never had any side effects from it. I had to recently stop using it because I built up an immunity to it. now, hoping for success with the Botox shots. My neurologist said that with each round every three months, it becomes more and more effective.

@duchess926 - you are in exactly the right spot, as you are posting in this discussion on Mayo Clinic Connect:

- Want to connect with people dealing with hypnic headaches https://connect.mayoclinic.org/discussion/trying-to-connect-with-people-dealing-with-hypnic-headaches/

I don't personally have headaches, but I do have allergies and asthma, and I've had the experience when suddenly a trusty medication no longer works for you. Such a bummer. Is the rizatriptan you use at night as needed helpful? Are you at a sufficient distance from your injections to know if this treatment is working for you?

Hello did you find that the indomethacin kept its efficiency for a long time compare to other meds that would loose its efficiency over weeks or months? Its important to take the 'slow release' tablets? I will discuss it with my neuro. Do you also need to take the melatonin now? I've read various comments here and indomethacin seems to be the 'go to' for hypnic headaches after caffeine... For a while caffeine alone was doing the job for me but the past 4 years it has lot some effect and is not enough. The only thing with the indomethacin its a nsaid wich could be bad for the stomach etc.. May i ask how long youve been taking it ? Thank you

Hello did you find that the indomethacin kept its efficiency for a long time compare to other meds that would loose its efficiency over weeks or months? Its important to take the 'slow release' tablets? I will discuss it with my neuro. Do you also need to take the melatonin now? I've read various comments here and indomethacin seems to be the 'go to' for hypnic headaches after caffeine... For a while caffeine alone was doing the job for me but the past 4 years it has lot some effect and is not enough. The only thing with the indomethacin its a nsaid wich could be bad for the stomach etc.. May i ask how long youve been taking it ? Thank you

@benchi300 how are your headaches now? I hope you got some professional help. I was just wanting to update my reply since its about 1-2 years later. Indomethacin (us melatonin and no more nocturnal coffee) does still prevent the "hypnic" type headache about 92% of the time. I was encouraged to slowly dose of indomethacin from 75mg gradually to 25mg per night at the urging of my MD from Mayo and from Kaiser. If I take no indomethacin (which I do twice yearly to see if I still need it), I get a very sickly nocturnal headache (and awaken multiple times through the night) and the last awakening my headache is pounding and relentless. I have severe nausea and the pressure in my ears and behind my eyes is severe. I keep injectable Toradol to use for those episodes. After those episodes, I always have a low grade persistent headache and moderate nausea for about 5-6 days. I'm also more prone to migraine breakthrough after those "trial" withdrawal of Indomethacin.

As for the coffee at night, I no longer need to drink it. In the past, I always drank either medium or dark brew (various brands). I am now taking Ajovy for migraine prevention and it works about 26/30 days monthly. I took Emgality for several years for the nocturnal headaches (not migraines) and it seemed to be a bit more effective than Ajovy for me, but I had to pay for it as there were no CGRPs on the formulary at Kaiser when I first began preventative treatment with a CGRP. Ajovy is now on formulary and my copay is less than half the price I paid for Emgality.

@benchi300 I can't edit my post from yesterday, but I made a mistake about Emgality--it was prescribed for MIGRAINE prevention and is good at that! However it did not impact my nocturnal headaches. I take Ajovy now for prevention of Migraines. Emgality (for me) was more effective than Ajovy at preventing headaches and for improving my color vision, visual acuity, and reducing my blinding persisting "afterimages." Both skin health and hair health improved dramatically after several months on Emgality. And Egality reduced severity of prodromal early symptoms (nerve/muscle twitches, scotoma, numbness).