Want to connect with people dealing with hypnic headaches

@taterjoy - I also have had a long term problem with Hypnic Headaches…medication was hit or miss… Fiorcet and other things ….i have recently completed my second round of 31 botox injections into my head and it’s working!!! i’m told that by third round it really kicks in…well my second round feels like it kicked in!!!! I have also had a fabulous procedure for my trigeminal nerve pain called Scrambler Technique…also known as Calmare Therapy…i’m sure my brain is pretty fried by now!!!

@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).

@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’m still taking indomethacin nightly. Along with Melatonin. I do take a preventative prescription medication also, due to the G.I. risk of indomethacin. It’s called Protonix (pantoprazole)). So far it has prevented gastric complications.

@lisalucier - When necessary, I take Rizatriptan at night for my Hypnic Headache and it usually works. I had been taken Fiorcet for years as it was fast acting, no side effects and I was able to fall back to sleep. Felt really good upon awakening. However, I think I’ve been building up a resistance so switched to Rizatriptan. As of now, (Nov, 10), I’ve completed by second round of Botox shots for pain. It’s been 4 days but I’ve had two nights without a headache and hope it keeps up. I also had an unusual nerve pain procedure for my Trigeminal Nerve Pain. I’ve been dealing with two separate issues for years. For Nerve Pain, I discovered something called Scrambler Therapy. I read about it thru Mayo Clinic but found a clinic in New Jersey that does the procedure. Totally non-invasive and not painful. Also, so far, very good…..I’ve been dealing with two pain issues for quite some time and really want to be medication free.

@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?

@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 I only take it when awakened by a headache. I’m up and then exercise and then lay down again. Have not had any side effects. Might in the future.
You are right it’s not perfect and I’m always on the lookout for something better. Will talk to my doctor about fiorcet. Thanks.

@mlpults - Hi! I also looked up Indomethacin and did not like what i read….I don’t want to take anything daily plus too many side effects … it also said not to lay down for 15 minutes after taking the pill so I guess you don’t take it at night??? and it’s most common side effects are everything that I despise such as nausea, vomiting, diarrhea, constipation, heartburn stomach, discomfort, and indigestion.. everything I avoid if possible. I guess we all find what works for us. Fiorcet may stay in the system longer, but I have absolutely no side effects and I only take it when I have my head pain.

@mlpults looked up Fiorcet, and to me it’s iffy because of the barbiturate and addiction . Also it stays active in the body over 23 hours. Not good if you have to take it often. Indomethicine stays around 5 hours. And it does make me sleepy after about an hour.