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brianinop
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just found out
« on: Jul 14th, 2007, 4:37pm » |
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Hey everyone my name is Brian. I just found out through a nuerologist that i have been getting clusters. I have been getting them for about a 4 weeks. The neurologist prescribed me oxygen at 10 ltrs. It seems to work only if i catch it early enough. I must admit i like to drink a couple of beers every now and then, but that has come to a screeching halt. My question to any and everyone is how do you know when these things go into "remission", because i would really like to have a beer but know the consequences if i do so i have refrained. A little about me-- I am a 36m with one daughter 3 years old and married 6 years. Any replys would be greatly appreciated--Thank You
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Kris_in_SJ
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Re: just found out
« Reply #1 on: Jul 14th, 2007, 8:05pm » |
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Hi and welcome to the family,
So sorry you had to find us for a reason, but there's no better place to learn all you can about this syndrome and the various methods of treatment. The good thing is you have a diagnosis - that's the start, and if you're around for awhile, you'll see how hard it is for many of us to get that diagnosis.
It's a little quiet this weekend because of convention, but I'm sure others will be along with their advice. Meantime, here's mine (please note that most of us aren't doctors - just sufferers who've been around awhile.
First - regarding oxygen. There's no better abortive for many people here. However, it needs to be used with a non-rebreather mask at 12-15 liters/min. for best effectiveness. Please read the Oxygen info to the left.
Also, in addition to abortives, most of us use preventatives like Verapamil or Lithium, which build up blood levels gradually and greatly decrease the frequency and intensiveness of the attack. Many, like me, also do a Prednisone taper at the beginning of a cycle, which can totally knock the headaches out until the preventative has a chance to work. Here's a link to the best medical treatment currently available. Print it out and take it to your neuro.
http://www.brightok.net/~mnjday/chtherapy.pdf
Also, if you get hit at night, many like to take Melatonin (available OTC at any drugstore). 3-12 mg about 30 minutes before bedtime can really help. Takes a few days to kick in. Even if you don't get hit at night, this natural supplement can really help with your sleep patterns.
As for remission, we're all different. My cycles normally last from 10-12 weeks, then I go into remission for 3-5 years. From those I've met here on the board, most who are episodic have cycles that last from 6-16 weeks. That's why you need an arsenal of treatments. That many weeks of daily, multiple hits can really drag you down physically and emotionally without the proper treatment. Read all you can and become informed about this syndrome. Be an advocate for your own care. And keep checking in. We tend to worry.
Many hugs and PF wishes,
Kris
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I'm a small woman in small town being chased by a VERY BIG BEAST!
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thebbz
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Re: just found out
« Reply #2 on: Jul 14th, 2007, 9:48pm » |
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Be glad you know. Be glad your here. Read and study your condition, the knowledge will serve you well in your battle.
Read all the links on the left and do some homework, you will be glad you did.
Your next assignment will be followed by a quiz.. 
all the best and welcome
jb
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George_J
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Re: just found out
« Reply #3 on: Jul 15th, 2007, 1:22am » |
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on Jul 14th, 2007, 4:37pm, brianinop wrote:| I must admit i like to drink a couple of beers every now and then, but that has come to a screeching halt. My question to any and everyone is how do you know when these things go into "remission", because i would really like to have a beer but know the consequences if i do so i have refrained. |
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I normally consider that a cycle has ended when I've gone 7 days without a hit or a shadow. But that's just me. It's been pretty accurate over the years.
Then I take the beer test. If I pass, the cycle's really over. Don't worry--if you're one of us who's sensitive to alcohol when you're in cycle, it'll only take a couple of swallows. Blammo--if you're unlucky.
Best wishes and welcome,
George
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Ah! The foreigners put on such airs
Wearing the tangerine suits
And their harlequin eyes.
The pain they inspire
Draws in harmonica melodies
And the feathers of birds
Which flame up at their touch.
It all comes to light in the sheer
Debonair.
(Ellen)
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brianinop
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Re: just found out
« Reply #4 on: Jul 15th, 2007, 8:05am » |
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Thanks George I think I'll give your advice a try. I haven't had one in 3 days, but i'm not sure what exactly is a shadow.
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George_J
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Re: just found out
« Reply #5 on: Jul 15th, 2007, 10:32am » |
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on Jul 15th, 2007, 8:05am, brianinop wrote:| Thanks George I think I'll give your advice a try. I haven't had one in 3 days, but i'm not sure what exactly is a shadow. |
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Sorry, Brian...I forget sometimes that the lingo isn't lingua franca. My bad.
By a shadow, I mean a low-level CH hit--one that never develops into a full-blown barn-burner. Anything under a kip 5, basically. See the left side of your screen for the link to "the kip scale".
Best wishes,
George
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Ah! The foreigners put on such airs
Wearing the tangerine suits
And their harlequin eyes.
The pain they inspire
Draws in harmonica melodies
And the feathers of birds
Which flame up at their touch.
It all comes to light in the sheer
Debonair.
(Ellen)
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GrandPotentate
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Re: just found out
« Reply #6 on: Jul 15th, 2007, 10:47pm » |
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I'll usually have a few sputters with hits a few days apart at the end of cycle. If I'm PF for a week, its time for a beer test. If that works okay, a several beers test at a noisy bar. I've now added Chinese food a few days after that. Hopes that you will be enjoying a cold one soon!
There are many of us that enjoy a beer or otherwise use alcohol between cycles. Perhaps we need a subgroup for Cluster Headache User's Group - CHUG!
In all seriousness, however, it is another stress on the body that we would probably be best to keep in moderation or less. We're going to need the strength for the next cycle, eh?
Jon
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Jon
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brianinop
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Re: just found out
« Reply #7 on: Jul 16th, 2007, 12:02pm » |
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Thanks Jon--I thought I was on my way. I was PF for 3 days and then whack, last night I had a killer at about 11pm O2 did not help. Then I woke up at 1:30am with the start of another but the O2 took it away about 12mins later. Thank goodess I got some sleep after that. I did like the CHUG idea though, I was beginning to think I was an outsider because I liked to drink a few beers from time to time. Guess I'll just have to wait. Thanks Again, Brian
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Rosybabe
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Re: just found out
« Reply #8 on: Jul 16th, 2007, 1:54pm » |
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HI Brian!
welcome!
take it easy and hope you enjoy some more PF nights!!
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brianinop
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Re: just found out
« Reply #9 on: Jul 16th, 2007, 2:00pm » |
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Thanks Rosy I'm just glad I found this site. I guess I never knew exactly what pain was until about 4 weeks ago. It's nice to know there are people out there who understand and care. Thanks again
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Patrick_A
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Re: just found out
« Reply #10 on: Jul 16th, 2007, 5:18pm » |
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Mine go away just llike they come.
My last episode....I woke up with a mild HA, but with all the symptoms of a CH, but just barely enough pain to wake me. Went back to sleep within 10 minutes. 1 week later, I woke with 1 that had a little bit more intensity, within 5 weeks I was up to 5 a day. If I let them take their course and don't stop them, they taper back the same way they came.
PA
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Kris_in_SJ
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Re: just found out
« Reply #11 on: Jul 16th, 2007, 8:36pm » |
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Hi Brian,
I just found out that the link I gave you for cluster info has been moved. If still interested, you can now find it at:
http://plainboard.com/ch/chtherapy.pdf
Sounds like I'm the lucky one around here - alcohol is never a trigger for me when in cycle. I just generall go by no attacks and no shadows for at least a week before I feel safe.
Hugs,
Kris
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sandie99
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Re: just found out
« Reply #12 on: Jul 19th, 2007, 4:30am » |
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Brian,
welcome to clusterfamily! 
I'm so sorry that you have clusters, but it's great that you found your way here. This is the place for info and support all at once.
Lots of PainFree days,
Sanna
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CH happends, Live anyway! PF days to us all!
"Do what you can and let God take care of the rest. Leave your heart wide open and always wish for the best" (Sanna Hillu)
"No matter how far out your dreams are, it's possible" (Marketa Irglova)
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