This is why it is crucial to see a migriane specialist if our headaches are refractory to treatment. I have had migraines for years, and they became hormonally linked since puberty. They were much worse and occured daily for several years before I was diagnosed with thyroid disorders at age 45, and put on Synthroid (cut the frequency and severity). This year my regular monthly migraines (which used to last 5-12 days per month) became horrendous events lasting 21-26 days per month, beginning with menses. Having recently moved across the USA, I lost contact with my prior migraine specialist, and starting seeing a new one two months ago.
After charting two months of excruciating headaches following my migraines at menses (and waking me from sleep and not responding to ANY medications), I saw the specialist yesterday with my "charts." He immediately recognized that my hormonal migraines were transitioning into a very rare type of headache called "Hypnic headaches" which wake you up at the same time in the middle of the night, can be mild to severe, and for me caused such intense vomitting and/or sustained nausea I have been losing weight. While it is extremely rare to have them under age 65, I am 50. While it is rare that they mimic migraines (light/noise sensitivity), mine do. Supposedly they respond to lithium, indomethicin (Indocin), verapamil, and another calcium blocker, and caffiene but not at all to triptans, antiseizure meds, or fioricette.
Last night I took very high doses of Advil before sleep and during the night when I was wakened (I had not gotten my new RX's filled yet). It helped. Instead of awakening with a 9+ pain scale headache, it was about a 3 and I was only mildly nauseated. IndocinSR is a much more potent NSAID and long-acting, so hopefully it will help even more.
And now that my specialist understands the excruciating pain that I was in for hours during the night (pacing 3-4 hours nightly, crying continuously, unable to sit or lay down, until I finally passed out from sheer exhaustion or from the balbutilol/halcion/triptan combo), he put me on several other things including Stadol nasal, a narcotic that works quickly (absorbed through bloodstream in nose) and not affected by massive vomitting. There is hope for me or for anyone suffering from this rare form of headache, which in my case my specialist thinks is linked to the migraines. The scanty medical literature sites REM sleep aberations, melotonin imbalance amongst other things as potential causes, but not enough studies have been conducted.
For anyone suffering headaches that wake then suddenly from sleep, apparently there are many potential causes (such as sleep apnea, temporal arteritis, cervical disk problems, brain tumor, brain hemorage, cerebral hypertension, migraines/clusters/continua); hypnic headache is only one cause. I hope this helps someone out there who is experiencing "waking headaches" or "morning headaches" for whom routine meds dont' seem to help. I feel that I now have hope.
Thanks Teri for the info on how to work with an MD (I read it several times before going in yesterday) and for Nancy's ideas and support in figuring out this refractory headache. If this new regimen does not work, the specialist said we would resort to hospitalization and investigation of other causes (My MRI showed no tumors). I am finally feeling hopeful for the first time in months. Clemmie
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