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Topic: CH Newbie (Read 1969 times) |
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Just_T
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Will post a pic as soon as I can figure out how!
  
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Hi, I'm T, 43 years old and a newbie to the CH's. UGH! Just what I wanted at this point in my life.... NOT!
I have read different things that say this is genetic, or not?? Who knows? I do know this... My mom has suffered from CH's for 25+ years and my younger brother is also a sufferer, for 10 years or so now.
Thankfully, my GP diagnosed me with CH immediately, so at least he has a clue. Unfortunately, the samples he gave me Zomig, Axert, Relfax (?) did nothing to help.
He also gave me Soma and Lortab, when taken together, with a Xanax will usually allow me to go to sleep.
After reading some of the posts, I have increased my H2o consumption and tried to avoid other "triggers" such as caffiene, chocolate, alcohol, etc....
Fortunately, on the kip scale I have only had a couple episodes 8-10 but have consistantly been in the 4-6 mode for about a month now, with few periods of 0-1 that lasted for what seemed like minutes!
My brother found, in his "treasure chest" some Imitrex pills, which seemed to help the most, after taking 2-3....but the Dr. had no samples and my insurance will only pay for 9 a month...after that the same 9 pills will cost $150, which I simply do NOT have! I'm holding on to the last 2 "platinum pills" for a dire emergency. I'm sure you have run up against the same situation, with insurance companies.
I just wanted to say, thank you for this site, for the information and understanding.
You all are in my thoughts and prayers for PFDAN!!
T
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seasonalboomer
CH.com Alumnus
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If I think hard enough maybe it'll go away.....
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Re: CH Newbie
« Reply #1 on: Nov 4th, 2005, 4:03pm » |
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on Nov 4th, 2005, 3:27pm, Just_T wrote:Hi, I'm T, 43 years old and a newbie to the CH's. UGH! Just what I wanted at this point in my life.... NOT!
I have read different things that say this is genetic, or not?? Who knows? I do know this... My mom has suffered from CH's for 25+ years and my younger brother is also a sufferer, for 10 years or so now.
Thankfully, my GP diagnosed me with CH immediately, so at least he has a clue. Unfortunately, the samples he gave me Zomig, Axert, Relfax (?) did nothing to help.
He also gave me Soma and Lortab, when taken together, with a Xanax will usually allow me to go to sleep.
After reading some of the posts, I have increased my H2o consumption and tried to avoid other "triggers" such as caffiene, chocolate, alcohol, etc....
Fortunately, on the kip scale I have only had a couple episodes 8-10 but have consistantly been in the 4-6 mode for about a month now, with few periods of 0-1 that lasted for what seemed like minutes!
My brother found, in his "treasure chest" some Imitrex pills, which seemed to help the most, after taking 2-3....but the Dr. had no samples and my insurance will only pay for 9 a month...after that the same 9 pills will cost $150, which I simply do NOT have! I'm holding on to the last 2 "platinum pills" for a dire emergency. I'm sure you have run up against the same situation, with insurance companies.
I just wanted to say, thank you for this site, for the information and understanding.
You all are in my thoughts and prayers for PFDAN!!
T
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Hey T,
Welcome to the land of Cluster love.
Sorry to hear you have to be here. I am also 43, and also have family member with CH.
If you think the Imitrex pills work, then you'll love it when you convince your doc to give you a prescription for injectable imitrex. Injectable is the "gold standard" here and is sworn by, from many here in Cluster land. Many won't even consider the pills because they take to long. The injection, sometimes works in minutes. (disclaimer: but not for everybody all the time) A middle ground is the inhaler, which many people use effectively.
I would suggest you take a look at the links regarding O2. I used O2 for the first time this past year and get so excited about how well it worked for me that I can hardly stand myself.
As I said, read up. Lots of folks have found some good weapons to deal with these damnable things. You may even find some good alternative options; like Kudzu or others.
Good luck in finding more PF days and nights,
Scott
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seasonal boomer
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Just_T
New Board Newbie
Will post a pic as soon as I can figure out how!
Posts: 4
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Re: CH Newbie
« Reply #2 on: Nov 4th, 2005, 4:11pm » |
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Thanks Scott for your reply. I am curious about the Kudzu...totally new info to me!
The Imitrex injections sound wonderful! I will certainly inquire about them...but wonder how badly the insurance company will put the screws to me!?!?
Guess I'll get with Mom this weekend and have the O2 on hand, for the next round.
Again, thanks for you reply and suggestions...
Good luck in your dealings with the BEAST!
T
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seasonalboomer
CH.com Alumnus
New Board Hall of Famer
If I think hard enough maybe it'll go away.....
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Re: CH Newbie
« Reply #3 on: Nov 4th, 2005, 4:17pm » |
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Hey T,
No problem.
Regarding the kudzu. Check it out in the Medications and Treatments threads. THere are two threads worth a good read. The one that shows the surveys of those who have used it (http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=meds;action= display;num=1109642810) and then the one that talks about what it is all about.
They are both long but there is quite a bit of experience that unfolded on those threads contributed to by many who gave it a try. It's legit. Doesn't work for everybody, but for many. Especially, it seems, episodics with fairly predictable cycles and frequency.
Scott
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seasonal boomer
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Just_T
New Board Newbie
Will post a pic as soon as I can figure out how!
Posts: 4
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Re: CH Newbie
« Reply #4 on: Nov 4th, 2005, 4:37pm » |
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thank you, thank you, thank you! will definitely check it out....you know how it is... willing to try anything!
at this point, i just wish i knew what my cycles and frequency were!!!! guess time will tell...huh?
T
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Jasmyn
CH.com Alumnus
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Each day will be a new trick in life's journey
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Re: CH Newbie
« Reply #5 on: Nov 4th, 2005, 4:38pm » |
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Welcome T
Sorry to hear that you have CH but you've come to the best place for help and support.
Read everything you can, here you will find many links that will assist you and your doc.
The light is always on in this place, so just pop in whenever, someone is always home.
Jas 
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Jazz
Madness is proclaimed by society’s inability to accept its own infallibility
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Just_T
New Board Newbie
Will post a pic as soon as I can figure out how!
Posts: 4
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Re: CH Newbie
« Reply #6 on: Nov 4th, 2005, 4:56pm » |
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Thanks Jas!!! 
Looks like I've found the place where I'll find the most help/advise available.
YAY!
T
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