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Hemiacrania continuoes

I have been diagnosed with hemiacrania continus today. Does anyone have any experience with this?

I have had headaches that fit many of the criteria for Hemicrania Continua, except that mine don’t last for three continuous months. Mine last a maximum of three days. But my headaches are Indomethacin-responsive, which is one of the criteria for the diagnosis.

Mine isn’t constant either but there most of the day. Mine is my forehead and temple and seems to have started after Botox. So I’m bit sure either: I do grind my teeth at night also do not sure if it’s that.

I had read that there are plp, who experienced continuous headache and that they do have a migrainous background but didn’t know that was what it’s called. Had a quick search since seeing yr post and pleased to read it responds to a specific drug so hope that’s good news for you. Wonder if it’s similar to MAV where the vertigo is continuous. I would regularly have 8 day long acute attacks of MAV where the predominant symptom was always vertigo. I have a sister-in-law who has straight migraine (headache type) that always last 5 days so there are similarities which wouldn’t help much with diagnosis so it wouldn’t be a surprise. People with HC who cannot tolerate the HC condition treatment are apparently offered the same preventatives as for MAV. I do hope having this definite diagnosis will lead to a resolution of your symptoms so you can get your life back on track. All the best Helen

I have migraines on top of these other headaches. But I’m not sure if it’s botox related. I really don’t want another medication to add. And this diagnosis has made me feel really anxious

Shouldn’t worry too much about it. It’s only words. Posh Latin words for a continuous headache that affects half your head. You suffer the symptoms all the time so it’s hardly news to you. You could have told them that. From a very brief read it seems it responds to one drug sometimes giving a complete recovery. I too really hate taking meds but that looks to be like giving it a go is a ‘no brainer’. Helen