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Topic: I am new here i need help (Read 386 times) |
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Nemissess
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I am new here i need help
« on: Apr 1st, 2004, 8:40am » |
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 i had no idea there were so many others like me i started my clusters 12 years a go and i have some questions 1) does any one elses lay dorment? i have them for about a year to 18 months then poof they are gone for months and out of the clear blue they are back im am so exausted from th pain i am afraid to sleep they wake me up every night now and i cant get relief except a few seconds as i cut the circulation off by wrapping my hands around my neck and sqeezing till i get dizzy the pain goes away for about 3 to 4 seconds long enough to get my breath i dont like narcotic meds is there ANY way to get relief with out meds????please advise i cant handle it any more its interfereing with my buisness and every part of my life thankyou for a response.
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PittsburghJoe
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Go away pain!
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Re: I am new here i need help
« Reply #1 on: Apr 1st, 2004, 8:44am » |
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Hey Nemi,
Check out the info on the links to the left, especially the oxygen info. O2 is a great abortive, very fast-acting on most attacks.
Also, get your butt to a neuro ASAP. Use the OUCH website for a list of recommended neurologists. Read up this site and the OUCH site, and print out key pages to bring to your MD. Arm yourself with info, there IS something you can do about it!
Good luck, and a pain free future to you!
Joe
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Nothing worth having comes without some kind of fight. Gotta kick at the darkness till it bleeds daylight. - Bruce Cockburn, "Lovers in a Dangerous Time"
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echo
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Re: I am new here i need help
« Reply #3 on: Apr 1st, 2004, 9:17am » |
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I'll ditto Joe's take. Please get a neuro appt. OUCH has a great listing of CH aware doctors.
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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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BobG
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Re: I am new here i need help
« Reply #4 on: Apr 1st, 2004, 12:53pm » |
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on Apr 1st, 2004, 8:40am, Nemissess wrote: i had no idea there were so many others like me There's thousands of clusterheads out here. But before DJ started this site we all believed we were alone.
does any one elses lay dorment? Yep. It's called being an episodic sufferer. They're called cluster headaches because they come in clusters or groups or cycles.
im am so exausted from th pain i am afraid to sleep they wake me up every night now We all get to the point of fear of sleep because we know what will happen as soon as we hit the REM sleep mode.
is there ANY way to get relief with out meds????Tried oxygen? Ice packs or heat? Stay away from the narcodics and pain killers. They will just screw up your head and you'll still have clusters. |
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Stay stressed. Never relax. Never sleep. Ever.
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t_h_b
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Re: I am new here i need help
« Reply #5 on: Apr 1st, 2004, 6:07pm » |
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There ARE others like you.
Agree with above, get to a decent neurologist, go armed with information, find preventative medication(s) that work like verapamil, melatonin, lithium, and abortives like oxygen and Imitrex. Read everything here, on the OUCH site, on chhelp.org.
Not going to sleep never helped me--the son of a b*tch just waited until I went to sleep and then hit me even harder.
Don't let it screw up your life--fight it.
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No, it's not a headache--it's a Stage Ten Primary Chronic Periodic Idiopathic Trigeminovascular Cephalalgic Crisis.
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Virginia
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Re: I am new here i need help
« Reply #6 on: Apr 1st, 2004, 7:22pm » |
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I would suggest stopping the whole squeezing-your-neck-till-you-get-dizzy-treatment!! One of these days you're going to pass out. 
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The Clusterhead formerly known as 9erfan.
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HypnoticFreddy
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Re: I am new here i need help
« Reply #7 on: Apr 1st, 2004, 7:27pm » |
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Read the links to the left. Especially the medical links. Use Google. Go to the OUCH website. Print stuff out. Start gathering documents and make a folder of information. Read threads in the Medications board on this website. You will learn and learn quickly.
-Freddy
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TxBasslady
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Re: I am new here i need help
« Reply #8 on: Apr 1st, 2004, 10:16pm » |
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Hi Nemi,
Welcome to Clusterville !
In addition to what the others have already mentioned, you might check out the posts on Melatonin. It sure seems to help alot of folks here. It's cheap, compared to the triptan drugs, and you can buy it OTC.
Read all the info here you can. Lots of great support on the board.
Let us know how you're getting along.
PF vibes,
Jean
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How lucky I am... to have known someone who was so hard to say goodbye too.
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Superpain
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GOT O2!?
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Re: I am new here i need help
« Reply #9 on: Apr 2nd, 2004, 1:07am » |
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on Apr 1st, 2004, 7:22pm, 9erfan wrote:| I would suggest stopping the whole squeezing-your-neck-till-you-get-dizzy-treatment!! One of these days you're going to pass out. |
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Actually, that's a technique I've used for years. It does bring a short period of relief when the headache is on full tilt. But if you do it too long it backfires and makes it worse. i think it's kinda like stretching out the veins real hard, so they hopefully relax a little quicker. Just gotta be careful not to pop all the blood vessels around your eyes. But even at that it's a pretty small price to pay, relatively.
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Chris
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joesf
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Re: I am new here i need help
« Reply #10 on: Apr 2nd, 2004, 2:07pm » |
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I haven't used meds in 15 years. During this time i went from every other year attacks to finally one cycle in 5 years. I been getting them for about 40 years.
I have used showers to relieve pain, and then rubbing side of head with towel or fingertips.
Hot compress, sometimes. Damp washcloth microwave 30 seconds. Apply repeat.
When the pain got real severe i would run on a treadmill or around the block. While was running , no pain, stop instant pain.
Ice pack when I was exhausted from running.
I just tried O2 this time. I am not sure of its effectiveness because eventually I still got them. But this time the real bad ones, the number 10's on a 1-10 pain scale never came. So maybe the O2 kept those down even though it couldnt stop them.
Try to learn to deal with is as best you can. When I have them in public, like on the airplane etc I have to find a place within to endure. It is tough, miserable, but that is it.
Finally I experienced instant relief from an attack last week at the Physical therapist was stretching my leg and foot. Something popped during the stretch and i felt it in the foot ankle leg and side of head. Pain gone instantly. I never had a HA turn off like that before with no after effect. Unfortunately i wans't there for HA and have no idea how to do what he did. Funny thing is as I am trying to space out this HA which came on during the session, he is stretching my leg looking for me to scream but as you all know nothing beats a cluster. So he really got a stretch out of me.and finally I did yell ..once. Maybe something Like Yoga?
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Charlie
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Re: I am new here i need help
« Reply #11 on: Apr 2nd, 2004, 7:34pm » |
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Welcome to the fold and sorry you have to deal with this horror. For the no meds route, I suggest the cool/water/shower method and definitely try vigorous exercise. It has worked for some. Here is a link to what worked for me as well as other ideas:
http://www.netsync.net/~charlies/
Good luck and let us know how you are doing.
Charlie
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There is nothing more satisfying than being shot at without result---Winston Churchill
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Turts
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Re: I am new here i need help
« Reply #12 on: Apr 6th, 2004, 3:52am » |
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Well, theres not alot to add. BobG summed it up nicely.
click on the menu to the left and read, read and read.
WELCOME ABOARD THE CLUSTERHEAD EXPRESS next stop Insanity.
Enjoy the ride. 
Turts
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'I'm very brave generally,' he went on in a low voice: 'only today I happen to have a headache.' (Lewis Carroll)
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