hemicrania continua

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Posted by Wolfmist ( on September 01, 2000 at 07:14:43:

Hello folk. I've fairly recently been diagnosed with hemicrania continua and i'm looking for others who have it too. Naturally, I have to get a headache that less than 1% of the population gets and then be one of the miniscule proportion of women to get them.

It is.. and is not.. typical of what I'm reading about cluster headaches. Yet it IS a cluster I'm told by my neuro. I have right side pain, centered in the eye. My eye waters, turns red, eyelid droops. My right sinus gets stuffed or runs. Difference is, when it starts, it doesn't stop. Sometimes for MONTHS. Not hours or days. I can't sleep or think. They often come on while I'm asleep. I know what "shadow headaches" are. I live with one 24/7. I thought I was the only person who used that term. I'm glad.. and sad.. to know I'm not.

I think I've had 4 days in the last year w/o pain in my head. I'm always "aware" of my right eye. I know you know what I mean.... and boy is that a good feeling.

I'm on Indomethecin which has done a tremendous job. I can function for the first time in over a year tho I do still have breakthrough headaches. For those, I use maxalt which generally does not work, stadol for the killer ones and visit the ER when they get too bad to handle. Nothing like having used a vasoconstrictor then having them try to put in an IV, is there?

Anyway.. I'd love to hear from other women sufferers and find out what works and what doesn't for you. I have 3 small kids and it's so unfair for them to have a mom like me. I'd like others to commisserate with!

Thanks for listening!


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