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Hemiacrania continuoes


#1

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


#2

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.


#3

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.


#4

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


#5

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


#6

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