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        New Message Board Archives >> 2006-2007 Getting to Know Ya Posts >> Hi - I'm new here, but have had CHs for 5 years
        
(Message started by: nosleepy on Jun 21^st, 2007, 1:54am)

Title: Hi - I'm new here, but have had CHs for 5 years
Post by nosleepy on Jun 21^st, 2007, 1:54am

Hi everyone. I've just stumbled across this site, and WOW! Good advice all over the place!

I've been a CH sufferer for about 5 years now. I've had clusters that lasted longer than a year, and remissions that have been almost as long. In fact, I'm just coming off a 1 year+ spell where I had between 1 and 3 a day - almost every single day. Since I'm writing this at 1:50am, you might guess I just had one >:(.

I've tried most every possible approach to both avoid and eliminate headaches, and am having the most success with O2, Zomig NS (pills did nothing) and Stadol NS in the most severe situations. I also take Verapamil 360, but I'm not convinced it's helping prevent.

I'll try to stay connected to this group, because we all need some support to get through these little "blessings." Thank you to the person(s) responsible for this incredible site!

Title: Re: Hi - I'm new here, but have had CHs for 5 year
Post by Ray on Jun 21^st, 2007, 2:03am

Welcome to the family, I'm sorry for your pain. Read, ask, and we'll do our best to support you and answer your questions.

A note from my past experience, the Stadol NS turned me into a super grouch, and didn't really help much. Your milage may vary.

Wishing you PF days and nights,

Ray

Title: Re: Hi - I'm new here, but have had CHs for 5 year
Post by Guiseppi on Jun 21^st, 2007, 10:18am

DJ is the saint who decided the world needed this site. If it's withn your means hit the pay pal button on the bottom and throw a few bucks his way, he runs all this out of his own pocket!

I'm with you on the oxygen route. Still my favorite, most effective abortive with almost nothing for side effects. Your dosage on verapamil is still relatively low compared to what I've seen others on the board use. I don't use it so take that opinion with a grain of salt! ;;D Lithium is my prevent.

Welcome to your new second home, please stay in and out of cycle, we like the company.

Guiseppi

Title: Re: Hi - I'm new here, but have had CHs for 5 year
Post by Rosybabe on Jun 21^st, 2007, 1:07pm

Hi Nosleepy!

Welcome aboard!!!!

ask your Doc about a different preventative...maybe topamax or lithium could work. Melatonin and benadryl are other option for night hits.

Good luck and hope you have lots of pain free nights (PFN) and you get the sleep time you need.

Title: Re: Hi - I'm new here, but have had CHs for 5 year
Post by Sandy_C on Jun 21^st, 2007, 1:33pm

Welcome Nosleepy!

As you can probably already tell, you've stumbled upon the greatest website in the world for CH sufferers. There is more combined knowledge than you could ever believe. If you ask about a certain medication, you will receive responses from many who say it works wonderfully well, and others who say id didn't help them at all. But, this is KNOWLEDGE.

Welcome to the family. Ask questions, we're here.

Sandy

Title: Re: Hi - I'm new here, but have had CHs for 5 year
Post by Bob_Johnson on Jun 22^nd, 2007, 7:49am

Here is a link to read and print and take to your doctor. It describes preventive, transitional, abortive and surgical treatments for CH. Written by one of the better headache docs in the U.S. (2002)

http://www.brightok.net/~mnjday/chtherapy.pdf
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Stadol has virtually no application for CH. Your Verap dose is too low (see above article) and it takes a week or two to kick in and dosage adjustment often needed to find what works for you.

Please explore the buttons, left.

Title: Re: Hi - I'm new here, but have had CHs for 5 year
Post by sldrswyfe on Jun 26^th, 2007, 7:05pm

Im glad you found the site. At the very least you know you're not alone and have many others that really know exactly what you're going through.

Glad you found the site fairly early on in your diagnosis...I found at about thirteen and half years in.

Welcome... I hope you find a treatment that works well for you. Thoughtfully, Sherri

Title: Re: Hi - I'm new here, but have had CHs for 5 year
Post by Patrick_A on Jul 6^th, 2007, 10:06pm

Welcome. It seems like you are well on your way to getting lots of good info.

Patrick_A