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Chronic severe nocturnal hypnic headaches
Headache & Migraine | Last Active: 3 days ago | Replies (277)Comment receiving replies
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!!
Replies to "I am so so glad you will see Dr. Sacco and are seeing an MD affiliated..."
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.
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The neuro hasn’t prescribed injectable yet. I desperately need that. I’ll contact them tomorrow and hope they give it to me. The fear of sleep is very daunting. I have had a bad headache all day. The “episodes” of the extreme throbbing seems to be about 3 hours after I fall asleep I think. I think I also have a combo of clusters/hypnic/migraine. I want to get a hormone work up done as well since I’m in peri menopause. My mom suffered from clusters during perimenopause too. Thank you again for being a wealth of information!