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Title: New to the Site... Post by Langa on Dec 2nd, 2004, 4:05pm Hello Everyone...I'm new to the site and wanted to introduce myself. I've been a CH sufferer for 26 years. I remember my first attack at the age of 10 vividly, however did not begin actual cycles until the age of 16 or so. My cycles have always started in June, every summer, though twice I skipped a year. My cycles usually lasted about 6-8 weeks. This last cycle, however, lasted 4 months! I believe the preventative I was on, Depakote ER, extended the cycle. I was on Imitrex and 02 for abortives...02 usually aborted the clusters for me within 5-15 minutes after use. I wish I would've known about the oxygen years ago. Thanks again for a wonderful site. Langa |
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Title: Re: New to the Site... Post by Ronny on Dec 2nd, 2004, 4:46pm Hi, I wish you didnt have to be here but i'm glad you found it. Ronny. |
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Title: Re: New to the Site... Post by alleyoop on Dec 2nd, 2004, 4:47pm Hi Langa, Welcome! Great first post- a bit of history along with your current meds. As the saying goes, "Sorry you had to come looking, but glad you found us." Sounds as though you may have been 'lurking' for a while. If not, there is a wealth of information here. Be sure to explore the links to the left. Question: Were you taking Depakote before your last cycle? If not and your last cycle was the first time you used Depakote as a prevent, that could very well be the culprit for your extended cycle. I have never taken Depakote, and thus am not that familiar with it. I am sure someone more knowledgeable will be along that may be able to shed more light. I do know that some prevents (ie, verapamil) will not only lengthen cycles, but also some are convinced that they have actually caused them to go from episodic to chronic. I'm glad the o2 works for you. That is truly a blessing. As I am sure any CH sufferer will attest, any thing that brings relief is worth trying- the less we have to fall back on drugs, the better. Some of these meds are a mixed blessing, considering some of the side effects that come along with them. I assume you are out of cycle and just stocking up on info for your next round. Whatever the case, I'm glad you found us and don't be shy about asking questions. We are all rowing the same boat here. .............................alley ;) |
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Title: Re: New to the Site... Post by Langa on Dec 2nd, 2004, 5:06pm Thank you for the warm welcome. Alley, not sure what "lurking" means. I have been reading a lot of info on the links to the left as you suggested the last couple of weeks. Wow. So much info to take in. I've printed a lot of stuff and yes I am ready for next time. In answer to your question, my last cycle was the only cycle I was put on a preventative, Depakote ER, and so that's why I believe the cycle was as long as it was. On Depakote ER, my ha's never went up higher than a 5 or so. I shadowed a lot, but never got those dreaded kips10's as they are referred to here, so even though the cycle lasted 4 months, I was grateful that the suffering was not as intense. The oxygen for me ALWAYS aborted a headache (first cycle ever to be prescribed oxygen). You're right, it is a blessing. For most of my CH life I was told I had migraines. It was when I changed my primary doctor that I was told I had clusters and was referred to a Neuro. He's the one that put me on the Depakote and 02 this last cycle. I did question my old primary once about clusters and he said "women don't get clusters". Langa :) |
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Title: Re: New to the Site... Post by alleyoop on Dec 2nd, 2004, 7:14pm on 12/02/04 at 17:06:11, Langa wrote:
Langa, "Lurking" is reading the boards and not posting. Not a derogatory term at all. AAMOF, I lurked for years before getting up the nerve to actually post. So you might say you're way ahead of me in the game ;) (although CH is certainly no game). Hopefully, someone more familiar with Depakote will post soon. If not, you might try posting on the "Medications and Therapies" board. I feel pretty sure that your last cycle using Depakote was a trade-off - milder and maybe less frequent ha's for a longer cycle. :-/ Glad you've got some PF time and it's really great to see you so pro-active in fighting this heinous disease. Any more questions? Fire away! ...................alley :) |
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Title: Re: New to the Site... Post by Langa on Dec 2nd, 2004, 7:48pm Alley, thanks for explaining what "lurking" is, but you lost me with AAMOF (this wasn't on the netiquette list :P). Yes, i'm sure in the days to come i'll have more questions and look forward to corresponding with more of you on the board. Langa |
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Title: Re: New to the Site... Post by nani on Dec 2nd, 2004, 8:54pm As A Matter Of Fact... AAMOF Welcome Langa...so sorry you're here. Glad you've looked around, that's what I would've suggested. Hope you get some Pain Free Days And Nights! PFDAN! :) |
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Title: Re: New to the Site... Post by thebbz on Dec 3rd, 2004, 9:23pm Hi Langa, Sorry for the late post but....welcome. Your in the quarter century club!!! 25 years here. Stick around and study..All the Best BB |
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