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Topic: First-timer (Read 389 times) |
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west17m
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First-timer
« on: Jan 29th, 2003, 12:27pm » |
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I'm a newbie to the site and a 'clusterhead.' I got my first cluster about two years ago, had them for about a year and a half (which I now guess is a cycle), and then NONE for six months. Regardless to say, I did some searching because I've gotten around five CH's in the last week. Life was SO good those six months and I don't want to start that crap again.
I have a few questions for those of you who scavenge the msg boards.
1) What's the average age in here? I'm 22 and from most of what I read this is something that normally hits a few years down the road.
2) Anybody got a good idea for keep this 'cycle' from starting up? I still have a lot of Ca blockers laying around and some Zomigs, but they probably won't last long.
3) What's the typical time for a cycle? I would hope that 1 1/2 yrs isn't normal.
4) What's the typical time between cycles?
Well, thanks for the info and for making such a great community. I'm sure I'll be sticking around.
-- Travis
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Mark C
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Onward through the fog.
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Re: First-timer
« Reply #1 on: Jan 29th, 2003, 1:03pm » |
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Welcome aboard Travis,
Pull up a chair and stay a while. I'm fixin to go to work so my time is limited to a howdy for now....se ya later...
Mark
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echo
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Chronic and still alive --- I Win!
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Re: First-timer
« Reply #2 on: Jan 29th, 2003, 1:07pm » |
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The cluster survey button to the left will give you stats that will answer several of your questions.
There are many preventative meds or combo of meds that work for some but not others, information on these can be found in the medications section.
Welcome to the MB.
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"If you love something, let it go. If it doesn't come back, hunt it down and kill it".
Proud Dad of a US Marine, and a former Marine turned Police Officer.
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cathy
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Re: First-timer
« Reply #3 on: Jan 29th, 2003, 1:16pm » |
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;D
Hi Travis...sorry your suffering at such a young age...read, read, read....they're a great bunch and are always willing to help if they can...so Im just here to say welcome aboard...hang on tight cos sometimes it's a bumpy ride... lol ;D
Cathy
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Edna
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Re: First-timer
« Reply #4 on: Jan 29th, 2003, 1:18pm » |
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Hi Travis, and welcome
No real age range here, we got some oldies but goodies and young uns here too. Myself, I started with this misery at the age of 14 and am now 39. Not a comfort I know, but goes to show you too can conquer the beast.
Cycles for me last anywhere from 4 - 6 weeks, and come around about every 2 yrs. This is THE dreaded year for me, so about May I start worrying.....summer is the worse and usually anywhere from mid summer nasty strong heat until September is when they usually start.
Meds for me is my imitrex injections. But, since finding this site a year or so ago, gonna be trying some of that 02 that's the craze here. lol
Read lots pal, there's much to learn. Glad to hear you planning on sticking around. Good luck and keep us posted.
pf wishes,
EDNA
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Roxy
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Re: First-timer
« Reply #5 on: Jan 29th, 2003, 1:19pm » |
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Welcome Travis,
You will find tons of info on this site, and also the OUCH site (button to the left), read and join....buy the T-shirt.
Can't help you much on the cycles as I seem to be chronic. I know there are a lot on here whose ch's started young.....also a lot whose started older. Don't think the darn things care how old you are......they just like to jack with ya. Oxygen will be your best friend.....cheap, painless, and no side effects.
The nasty things affect everyone different....no two ch'er's seem to be the same. Just find a good neuro.
Good luck....hope you can get PF,
Tracey 
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| « Last Edit: Jan 29th, 2003, 1:20pm by Roxy » |
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I used to have a handle on life....but it broke.
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brain_cramps
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Re: First-timer
« Reply #6 on: Jan 29th, 2003, 2:36pm » |
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Welcome aboard.
I can't answer for all of the old farts in here, but:
1. I'm 41 and have been getting them since I was 20.
2. I have never any luck had changing the patterns of my cycles, BUT I gave up on most of the meds about 5 years ago. (can't remember the last time I had a preventitive, can't afford imitrex, gonna get o2 before next cycle)
3. My cycles are luckily VERY SHORT. When I first got them they were 6-8weeks. Now they are around 3weeks.
4. My cycles come 1.5yrs apart... like clockwork. Longest stretch - 2yrs. Shortest stretch - 15months
Stick around and read, read, read!!!
PFDAN,
Grant
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| « Last Edit: Jan 29th, 2003, 2:38pm by brain_cramps » |
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west17m
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Re: First-timer
« Reply #7 on: Jan 29th, 2003, 5:03pm » |
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Thanks for all the replies so far. If everyone seems to be liking the O2 route, I have a question or two on that.
1) Do you need a script?
2) Cost?
3) Where to buy?
Thanks
-- Travis
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jonny
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Yes, you need a script, try getting one and if it dont work out send me an e-mail I have a way around a script.
..............................jonny
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2late
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Re: First-timer
« Reply #9 on: Jan 29th, 2003, 5:32pm » |
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welcome to the board west! i'm 37, went from chronic 5 yrs. ago to episodic 2 yrs. ago to practically p.f. for the past 7 months the beast has no ryme or reason for me, all i can say is research this site & ask questions on this board & you'll get thru.......good luck! ........2late
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cootie
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Re: First-timer
« Reply #10 on: Jan 29th, 2003, 5:55pm » |
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Welcome Travis.....you'll get alot of help here....jus hide yer chickens and sparklers (don't ask) cuz it can get purday silly on here sumtimes.....which can be a good thing at times. Good luck to ya....Pam 
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Charlie
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Re: First-timer
« Reply #11 on: Jan 29th, 2003, 6:19pm » |
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Welcome Travis:
From what I read; these things often begin the 20s. I was 23 back in 1969 when first hit. Most of us have been hit about an hour or hour and a half after falling asleep. They can hit anytime and you can have several during the day. Cycles can last for weeks or many months...some are chronic. I haven't been hit in nearly 13 years. They disappeared when I was 45 and so far so good. We aren't certain but there may be an age factor. The thing is; several people got them later in life. It's hard to know.
Here is something I used with good success:
Dr. Wright's Circulatory Technique
This is not transcendental meditation, imagery, relaxation, or anything psychic. It's entirely physical and takes a lot of work and concentration. Give this method a good workout. It’s not a miracle, but it’s been helpful to many.
When I was diagnosed, my neurologist said to treat this as a vascular problem. I was told to concentrate on “redirecting” blood circulation in order to retard flow to the head. This is done by trying to “send” blood into the arms and hands or other extremities. When properly done, your hands will become warm and redder with increased circulation. I also found it easier to concentrate on one hand.
This relieves just slightly, the pressure on the affected vessel, which indirectly causes our pain. We all have this ability but it can be exhausting. I was often able shorten my attacks from about half an hour to no more than a few minutes. Sometimes, when awake, I could entirely abort the attack IF I KEPT AT IT. Often, I would suffer only minor discomfort instead of excruciating pain. Do not stop just because your hands are warm or redder. Keep this up until you are sure it's subsided. If you let up or lose concentration, it’s very hard to restart this process. It may take some time but when this works, the relief is almost immediate.
I learned this from the doctor in a few minutes. He simply told me to try to keep blood away from the head. He thought it easiest to concentrate on the arms and hands but any place that works for you is fine. He said to think of it as "filling your hands" with redirected blood. It’s important to keep at it THROUGH the pain. This will be difficult, but it’s the only way this technique will work. Don’t let up until you are sure the attack has ended.
This will not always work, but I think it will always have at least some effect on the severity and duration of the attacks. It can be useful between medications or while waiting for some other drug to take effect. All it takes is a little practice. It was fairly easy to learn and what I'm writing here is more than I got from the doctor, as I've drawn from my own experience.
When awakened in horrible pain, it’s very hard to focus, but I think it’s always worth a try. This costs nothing but hard work, is harmless, non-invasive, and it gives us a fighting chance.
I wish you the best of luck - Charlie Strand
Stick around and let us know how you're doing.
Charlie
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