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29 Jul, 2008 - 10:03 am

Hi all‚

Yay‚ I finally remembered my password so I can post again.

I started getting CH when I was about 17‚ I'm now 39. In the past I have had yearly episodes of about 8-10 weeks that come March/April and July/August. (Had one episode that lasted 6months but think that was due to medication overload and rebound headaches hell of a time!)

This all seems to have changed over the past year or so. Rather than get my typical episodes with numerous hits‚ my cycle seems to be never ending but with only occasional (night time) hits (about 1 a week - always 3am). Thankfully I usually wake in time to get straight onto the oxygen and so far so good. (CH last about 40 mins a time). I stopped taking the verapamil back in May cos it makes me too tired - I suffer from fibromyalgia so tiredness is already an issue.

Its weird‚ and I'm not complaining at all! So much better than before. In fact it makes me wonder if I might be finally be growing out of them??? Has anyone else ever had this happen?

Appreciate any responses‚

Thanks‚

Kate

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29 Jul, 2008 - 2:22 pm

Hi Kate‚

I am 46 and have had CH since being in school I have not grown out of mine and must say that the last CH cycle I had was probably the worst I have ever had for becoming sick from excessive use of Prednisolone and Verapamil.
I find the oxygen very useful but only at the onset of a headache.
For me I still thing big doses of Prednisolone at the onset of CH then slowly ween your way off while taking Verapamil is the best cure for CH. The oxygen then can be used for the odd slip up.
Everyone seems to have their own cures or no cures and I am damn sure that my last CH was my worst as I got out of control with medications.
I am free from the Demon at the moment

Regards
David

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28 Dec, 2008 - 9:45 pm

Hi Kate‚

I also have a hit only once a week. They wake me between 2am to 4am on either a Friday or Saturday and have been going on for 4 months so far this time around. They can last anywhere between 4 to 12 hours which is hell. This has always been the case for me so I doubt you're growing out of them‚ maybe they're just changing. But for your sake I hope you are growing out of them!

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29 Dec, 2008 - 4:40 pm

Hi Kate
Good to see you back.
Sound like things are changing‚ hopefully for the better.

Cheers
Barry

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30 Dec, 2008 - 12:12 am

In fact it makes me wonder if I might be finally be growing out of them??? Has anyone else ever had this happen?

I've heard of them changing from chronic to irregular and vice versa‚ and also from occuring once or twice a year and then not occuring for several years.

It doesn't seem unusual for them to change.

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