Chronic severe nocturnal hypnic headaches

I am so so glad you will see Dr. Sacco and are seeing an MD affiliated with Duke university. I am not aware of their headache MDs or research, but hope you will get the support you need. And if you are taking lots of NSAIDS (ketorolac--I take the injectable version acutely to avoid ER; and Advil) you might ask your MD about ways to prevent gastric bleeding. It's not fun and can be serious. I have had no more gastric crises since adding Pantoprozole to my regimen (since I am a chronic user of Indomethacin and occassional Ketorolac or Motrin). My amazing Mayo MD (Dr. Mark Whealy) does not like long term use of Indomethacin but it's the only NSAID that works for me. I hope and pray hope is on the horizon for you!!

I’m 48, something I forgot to add earlier. I’ve tried a cup of coffee four nights in a row and no episodes. I’ve woken up with a headache, popped a Keroralic and was able to go back to sleep. Never turned into the excruciating throbbing like a cluster headache. I believe it’s a combo of hypnic turn into cluster headaches that awaken me at night. Still having severe headaches during the day at times but they are never the episode type of headache. I’m so sorry you had to go so long without a proper diagnosis. With your help, and being on this forum, I possibly self diagnosed myself in a few weeks. I’ll await for proper diagnosis but if I can prevent these with caffeine for now until I can get into the doctors recommended, then I’m forever thankful.

OH MY GOODNESS! THANK YOU for your amazing update. I am thrilled beyond measure that the coffee ketorolac combo has mitigated those horrendous unbearable hypnic/cluster headaches. I am so sorry I could not read this before. We moved my father in-law into hospice care Wednesday and have had challenges and been with him around the clock. Also was stricken with my usual "end of dose failure" of my CGRP injectable preventative, Ajovy (sickly daytime migraines) .

I am so so happy for you! Please ask your MD pronto--call them on Monday--ask whether or not you might need concomitant Protonix/pantoprozole to prevent GI bleeding (due to the Ketorolac and any day-time nonsteroidals you might be taking such as Motrin, naproxin, aspirin an many others). Ketorolac is only recommended for 5 days or fewer in a row. It, like Indomethacin/Indocin, can have serious side effects on the GI (gastric bleeding, ulcers and holes in stomach or intestine), kidney failure, heightened risk of heart attack, and others). Now that you feel better, the last thing you would want to do have uncontrolled GI bleeding or worse. Here is a link to more info: https://medlineplus.gov/druginfo/meds/a693001.html

Ketorolac, like Indomethacin (Indocin) also has a BLACK BOX Warning to to the risk of intestinal bleeding.

Please tell Dr. Sacco I said HELLO and appreciated her help back in 2005 and 2006. I hope and pray she can help you feel even better and treat your headaches more safely than daily Indocin. I wonder if she will recommend keeping Ketorolac in your regimen or trying an alternative. Please please keep me posted!! I hope you are well on your way to getting your life back!!!

OH MY GOODNESS! THANK YOU for your amazing update. I am thrilled beyond measure that the coffee ketorolac combo has mitigated those horrendous unbearable hypnic/cluster headaches. I am so sorry I could not read this before. We moved my father in-law into hospice care Wednesday and have had challenges and been with him around the clock. Also was stricken with my usual "end of dose failure" of my CGRP injectable preventative, Ajovy (sickly daytime migraines) .

I am so so happy for you! Please ask your MD pronto--call them on Monday--ask whether or not you might need concomitant Protonix/pantoprozole to prevent GI bleeding (due to the Ketorolac and any day-time nonsteroidals you might be taking such as Motrin, naproxin, aspirin an many others). Ketorolac is only recommended for 5 days or fewer in a row. It, like Indomethacin/Indocin, can have serious side effects on the GI (gastric bleeding, ulcers and holes in stomach or intestine), kidney failure, heightened risk of heart attack, and others). Now that you feel better, the last thing you would want to do have uncontrolled GI bleeding or worse. Here is a link to more info: https://medlineplus.gov/druginfo/meds/a693001.html

Ketorolac, like Indomethacin (Indocin) also has a BLACK BOX Warning to to the risk of intestinal bleeding.

Please tell Dr. Sacco I said HELLO and appreciated her help back in 2005 and 2006. I hope and pray she can help you feel even better and treat your headaches more safely than daily Indocin. I wonder if she will recommend keeping Ketorolac in your regimen or trying an alternative. Please please keep me posted!! I hope you are well on your way to getting your life back!!!

OH MY GOODNESS! THANK YOU for your amazing update. I am thrilled beyond measure that the coffee ketorolac combo has mitigated those horrendous unbearable hypnic/cluster headaches. I am so sorry I could not read this before. We moved my father in-law into hospice care Wednesday and have had challenges and been with him around the clock. Also was stricken with my usual "end of dose failure" of my CGRP injectable preventative, Ajovy (sickly daytime migraines) .

I am so so happy for you! Please ask your MD pronto--call them on Monday--ask whether or not you might need concomitant Protonix/pantoprozole to prevent GI bleeding (due to the Ketorolac and any day-time nonsteroidals you might be taking such as Motrin, naproxin, aspirin an many others). Ketorolac is only recommended for 5 days or fewer in a row. It, like Indomethacin/Indocin, can have serious side effects on the GI (gastric bleeding, ulcers and holes in stomach or intestine), kidney failure, heightened risk of heart attack, and others). Now that you feel better, the last thing you would want to do have uncontrolled GI bleeding or worse. Here is a link to more info: https://medlineplus.gov/druginfo/meds/a693001.html

Ketorolac, like Indomethacin (Indocin) also has a BLACK BOX Warning to to the risk of intestinal bleeding.

Please tell Dr. Sacco I said HELLO and appreciated her help back in 2005 and 2006. I hope and pray she can help you feel even better and treat your headaches more safely than daily Indocin. I wonder if she will recommend keeping Ketorolac in your regimen or trying an alternative. Please please keep me posted!! I hope you are well on your way to getting your life back!!!

Also I’ll tell her you said hello but I don’t know your name other than you are an angel to me who is helping me!

I'm so glad she was able to fit you in due to a cancellation. How did your appointment go? Feel free to write to me privately. I will also send you my name privately in case you see her again. I had no time to reply this am. THank you for your kind thoughts for my Father in law. Every day we have him is precious. I hope you will be headache free for this exciting weekend, and I hope Dr. Sacco was able to help you today!!! I use to wait months for an appointment with her, LOL, and am glad she is still in practice 19-20 years later!!!

Update. Saw Dr Sacco. Impressed by how long she spent with me. She doesn’t believe in getting hypnic headaches. Said they are clusters and that clusters can wake you up around the same time every night too. What I feel the next day is all part of it and resembles a non aura migraine she said. I don’t necessarily agree with that because my migraines are only ever on one temple and it’s almost my entire head that hurts during the day without an “episode”
She thinks I’m coming toward the tail end of the cluster since I haven’t had an episode in a week. I’m starting a new medicine when it’s ready: Verapamil 180mg 1 tablet at night. This is a preventative for the clusters. She is also putting me on a very high dose of prednisone even though I did a dose already a week ago. I hate prednisone but I know it helps. For the daytime headaches, she gave me nurtec and immitrex shots. I have a follow up in 3 weeks. The interesting thing she said was that she doesn’t think I need to waste my money on any scans. Doesn’t think this is a secondary headache meaning it’s due to an underlying illness or problem.

Update. Saw Dr Sacco. Impressed by how long she spent with me. She doesn’t believe in getting hypnic headaches. Said they are clusters and that clusters can wake you up around the same time every night too. What I feel the next day is all part of it and resembles a non aura migraine she said. I don’t necessarily agree with that because my migraines are only ever on one temple and it’s almost my entire head that hurts during the day without an “episode”
She thinks I’m coming toward the tail end of the cluster since I haven’t had an episode in a week. I’m starting a new medicine when it’s ready: Verapamil 180mg 1 tablet at night. This is a preventative for the clusters. She is also putting me on a very high dose of prednisone even though I did a dose already a week ago. I hate prednisone but I know it helps. For the daytime headaches, she gave me nurtec and immitrex shots. I have a follow up in 3 weeks. The interesting thing she said was that she doesn’t think I need to waste my money on any scans. Doesn’t think this is a secondary headache meaning it’s due to an underlying illness or problem.