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Topic: need help first time (Read 464 times) |
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noob
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need help first time
« on: Jan 22nd, 2005, 1:15am » |
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I had my first cluster last week and they keep getting worse.since last thursday i have had 5. went to the doctors they did a carotid ultrasound,mri,mra, meds they are trying are nadaol 80mg twice a day, and imatrax pill when i feel it coming on. but none of it is working i feel like i have had my brain ripped out and thrown on the ground. my vision goes to crap, my speech slurs and i loose my thought. does anybody else have these problems. i cant take the pain any more and the doctors at a stand still if anybody can give me some advice on how to deal with this.i will be deeply in your debt. i just want them to stop.
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RichardN
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Re: need help first time
« Reply #1 on: Jan 22nd, 2005, 1:34am » |
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Hi noob,
Sorry you are in so much pain.
Have you taken the "cluster quiz" (4th from the top on the upper left)? How'd you do?
You said "since last thursday I have had 5" . . . five headaches or five series of headaches? Can you describe how and where they start, how they progress?
If it is CH, and we hope it's not, you're in the right place. Much info here for you and your doctors.
Let us know,
Richard
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I can live with the beast as long as I don't have to "dance" with the bastard.
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noob
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Re: need help first time
« Reply #2 on: Jan 22nd, 2005, 1:49am » |
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they feel like the same headache they dull down then start back up again. my vision seems to go in and out. it starts and stays on my left temple it comes out of nowhere like a knife in my eye they last about hour to hour 1 1/2 then go away for abot 2-3 hours and start over again.
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RichardN
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Re: need help first time
« Reply #3 on: Jan 22nd, 2005, 2:31am » |
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Triggers?
Before I found this site and knew what I was dealing with, I was a fairly heavy drinker (2-4 sixpacks a day and occasional brandy/wine). I would be at a bar, have a couple of beers, here comes the ha . . . . down a couple of Goodies powders . . . . pace, hurt, right eye tear, close, sensitive to light in that eye, sound sensitive right side especially, sinus fill/ache right side and just suffer through it, then . . .whoosh . .. gone (but sore) . . . "damn, give me another beer" . . . . and a couple hours later . . . another, and repeat. Most were 20-45 min . . . the worst 2-3 hrs. By the time I found this wonderful bunch of lunatics I was having 6-8 a day, KIP 5-9. Quit alchohol 2/02 . . . My watering holes keep Busch NA (non-alchoholic) for me and I limit those.
I thought those 8-10 Goodies powders a day were helping . . . all they were doing was eating my stomach up . . .
I can't take Imitrex of any kind due to high cholesterol and arterie blockage, but I think the general feeling is that the tablets do not act fast enough . . . kind of like the powders above, by the time they get into your system, the ha is gone by itself. My only abortive is 02 which is always at hand. You can get a script from your doc, but first read and copy the info on oxygen . . . must be used properly at correct flo and with a non-rebreather mask.
Read, read, read and try water/water/water.
Richard
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I can live with the beast as long as I don't have to "dance" with the bastard.
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BobG
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Re: need help first time
« Reply #4 on: Jan 22nd, 2005, 3:18am » |
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on Jan 22nd, 2005, 2:31am, RichardN wrote:I was a fairly heavy drinker (2-4 sixpacks a day and occasional brandy/wine).
I thought those 8-10 Goodies powders a day were helping . . . all they were doing was eating my stomach up . . .
Richard |
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fairly heavy drinker???? That is more of a super heavy drinker. Glad to hear that has stopped. With that much drinking you'd eat away your liver while the Goodies ate your stomach.
One thing I learned back when I was a drunk......you can't outdrink a cluster headache.
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nani
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Re: need help first time
« Reply #5 on: Jan 22nd, 2005, 12:08pm » |
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Welcome, noob and I'm sorry you're having such a hard time. Look around the site here and print info to take with you to a neurologist. You need a definitive diagnosis in order to get the help you need. Good luck and pain free wishes...nani
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bejeeber
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Re: need help first time
« Reply #6 on: Jan 27th, 2005, 3:53am » |
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Pills? You don't need no steenking imitrex pills!
For CH you need Imitrex injections.
Make sure to check the imitrex tip topic on the left column over there. I tried it and can vouch for it's efficacy.
I'll also be checking out the mushrooms. Seriously, do a search here for "magic mushrooms" and see what you think about that.
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Cluster Headaches: better than a poke in the eye with a sharp stick!.....er...well OK, they actually DO feel quite similar.
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catlind
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Re: need help first time
« Reply #7 on: Jan 27th, 2005, 8:17am » |
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Noob,
Have they done a blood test to check your ESR?(sed rates) The vision and loss of thought thing is concerning to me. Although it is not unheard of with clusters, it doesn't tend to be a typical sign.
I am not a doctor, and you need to find a doctor that is going to listen to all that is going in your life, but those symptoms sound like they are up the alley of vasculitis, either temporal arteritis or another form of vasculitis.
Make the docs check every possibility, then start on some O2, that won't hurt anything, and if it's clusters and you use it at 8-15lpm with a non rebreather mask it may help immensely.
Cat
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BMoneeTheMoneeMan
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Re: need help first time
« Reply #8 on: Jan 27th, 2005, 10:49pm » |
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Yup, Noob. You have to take information with you to the Doc. Odds are, he won't have any. My doctor diagnosed me with CH, but he is ignorant of the popular meds that helps us bastards out.
You have to teach your Doc about this. Demand that you get O2 and Imitrex shots. Pills or oral disolves dont work fast enough/at all.
I HATE shots more then most anything. It figures the only way outta hell is my worst nightmare.
But I do it and it works!!
PF Wishes
TAKE CONTROL!!!
BMonee
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"Fool me once, shame on, shame on you. Fool - can't get fooled again"
Think of how stupid the average person is, and then realize half the population is stupider than that.
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bejeeber
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Re: need help first time
« Reply #9 on: Jan 28th, 2005, 3:26am » |
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Yeah, the O2 would be a nice non-toxic way to go if it works for you. And no matter how well something is working, make sure to have a back up plan, because this beast is known to be dodgy.
And hey, since it's January and all, and if you're in a cold climate, it couldn't hurt to try this one:
Breathe really cold air thru the nose.
I experienced CH episodes for so many years and this never occored to me before I read about it on the internet - a CH guy in Alaska accidentally discovered it. When an attack is starting to hit just go outside in the freezing air and snort away. I run in place to really get the air shooting thru there (extreme exercise has been known to work also).
This works great for me during the first couple weeks of an episode before the intensity really builds. After that I find it useless (just like the 02), but I hope you find it useful to some extent.
Since your doc prescribed imitrex pills, that shows he doesn't know jack about CH, but hey, hardly any docs do. 
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Cluster Headaches: better than a poke in the eye with a sharp stick!.....er...well OK, they actually DO feel quite similar.
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