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Message started by aldred27 on Nov 2nd, 2008 at 4:56am

Title: Hello
Post by aldred27 on Nov 2nd, 2008 at 4:56am
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hi
I have just joined this site, i am a 27 year old man, and have been suffering from headaches for the past 5 years... This week i have just been diagonosed with chronic clusters. I have these every morning of everyday and then throughout the day... I tryed all over the counter medication and medication presribed by my doctor and nothing seemed to work.. I went to see a nurologist this week and he has given me a letter for my doctor with new medication request, which is virapnol, think thats how it is spelt... Is this going to help me?? he has put me on 80mg i think... he has also prescribed me something else on the letter begins with IND can not read the rest. Does anyone know what this is?? and something else after the ind word says P.P.I.... Hope you understand this messege.
Thank you
Martin

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Title: Re: Hello
Post by BarbaraD on Nov 2nd, 2008 at 6:02am
Martin,

You're probably talking about verapamil. 80mg is a low dose, but someone else will be along to tell you about that.

O2 should be on the neuro's list of FIRST DEFENSE treatments. Read the O2 info here (on the left) Print it out and get it back to that nice doc and DEMAND it. About 70% of those of us here SWEAR by O2 and the doc should be aware that this is now a standard treatment for CH.

BUT, it must be on at least 15-25 liters with a NON-rebreater mask to be effective.

Welcome to Clusterville. You'll find we're a good bunch of nutz around here and are here to help because we UNDERSTAND where you are and what you're going thru. We've all been/are there (I've been chronic since 97). Ask questions (someone will be along to answer them), complain (we understand that) and read read read (there's a world of information here). Again welcome.

Hugs BD

Title: Re: Hello
Post by Just Plain Carl on Nov 2nd, 2008 at 8:46am
Hello Martin

Welcome to our club.

Verapamil is what I take but up to360mg per day.
I take this along with Prednisone (10 days).  It seems to work for the most part.

I also use oxygen as an abortive.

Threre is a wealth on information on this site.  Use it to your advantage.

                                        PFD's To Ya
                                               JPC

Title: Re: Hello
Post by BarbaraD on Nov 2nd, 2008 at 9:06am
Martin,

Correction (I'm OLD forgive me). The O2 info you need is under the medications sections at the top - posted by Cluster Chuck. It will give you the skinny on O2. Hope that helps.

Hugs BD

Title: Re: Hello
Post by DennisM1045 on Nov 2nd, 2008 at 10:08am
Hi Martin,

I'm so sorry you are here but I'm glad you found us.  

I agree with Barb in that the dose of Verapamil (if that is what it is) is low.  But the starting dose is not out of line.  Your doctors may be cautious for reasons we aren't aware of.

"IND" could be Indomethacin.  It's used to treat Chronic paroxysmal hemicrania (CPH).  This is a sister disease to CH and the symptoms are very similar.  CPH responds very well to Indomethacin.  If it takes care of your pain then CPH is the diagnosis.

Good luck and let us know how it goes...

-Dennis-

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