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Topic: new NEW new (Read 609 times) |
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thebbz
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Ow,Ow,Ow
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Re: new NEW new
« on: Nov 3rd, 2007, 6:42pm » |
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Good post
welcome
thebb
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It wasn't me I didn't do it
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ski2k
New Board Old Timer
 
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Re: new NEW new
« Reply #1 on: Nov 3rd, 2007, 7:09pm » |
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Welcome aboard!
Read as much as you can here. There's a LOT of information here. Chances are, you'll find something that will help you, along with the O2 and Verapamil. Biggest thing, is to read up on the Oxygen. Make sure you have the CORRECT prescription, and equipment because it makes a BIG difference.
Sorry you're in pain, but glad you found us!
PF wishes,
Adam
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Here's where I got my RC (Rivea Corymbosa)seeds: I am Shaman
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Shedz
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OUCH UK MEMBER
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Re: new NEW new
« Reply #2 on: Nov 3rd, 2007, 7:38pm » |
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Welcome to the nuthouse 
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I push my fingers into my eyes, It's the only thing that slowly stops the ache, But it's made of all the things I have to take, Jesus it never ends it just works its way inside, If the pain goes on, I AM gonna make it.... http://www.youtube.com/watch?v=Xps7AM8HbjE
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MR_FLOOR
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Go Cubbies / even though they suck
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Re: new NEW new
« Reply #3 on: Nov 4th, 2007, 1:44am » |
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I feel your pain. Most of us went through the same thing with the miss diagnoses. I myself started getting these damn things at the age of 14 and didn't get diagnosed til I was 30. So I know where your coming from with that.
You mentioned Verapmil,is that working for you? I have to say it does wonders for me. Also have you tried any energy drinks,Red Bull,Monster ect. anything with the combination of Taurine and Caffeine. Try to slam one down as fast as you can at the first sign of being hit. Good luck.
Dave
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RichardN
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Re: new NEW new
« Reply #4 on: Nov 4th, 2007, 2:47am » |
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Welcome Home
If you've just started Verapamil, your doc probably started you on a low dose. Your doc will gradually up the dose. I had my first PF day (in over a year) when I hit 240mg (had three hits that night . . killed with 02 . . . but it was a WONDERFUL day, finally realizing there was something that was going to work. I got as high as 480 mg . . . . many here take considerably more and in combinations with other meds like Lithium.
Read, read, read . . . . much info here and it comes from folks who truly know your pain. One of my favorite mottos on this board is, "nothing works for everyone, but SOMETHING works for everyone" . . . and here, you have a very good chance of finding the "something" that works for you. I can live with the beast as long as I don't have to "dance" with the bastard.
Be Safe, PFDANs
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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trigeminus
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thanx......i started with only 80 Mg
but it does work against the shadow
never really mentioned them cause there nothing compared to the beast
i do have the injector of immigran,but still a bit chicken to use this
but i know when he starts dancing i do annything to stop
(i did try them ten years ago then it did not work, just made it worse..
annyone had this experience? that immigran did not work but made it worse......i just wonder if it will do the trick...just a bit scared to try again)
it's just a relieve for me to finaly have the right stuff......
my Dr did not wanted to give me Oxy.......cause i do smoke
(and he probaly thought i was to tired to breath myself)
i know stop smoking is better......but i also know i had headaches before i ever started to smoke (i only smoke joints...want to gett a vaporizer)
he did not know annything about cluster headaches
he asked if i could print out the info for him....(?)
i told him to google himself!
not explaining more to him........he should educate himself (like we all had to)
just have a good neuroligist now (they also are hard to find not all of them know everything about headaches?????)
i'm just so tired of explaining that it;s so cool to finaly found a docter that really listen and know's what's going on
cause when i do look back this is what is hurting the most
trying to explain something you dont understand yourself
how can you make someone understand how this feels....
well i dont have to explain to you guys...
today i will fill my fridge with Red Bull...and try this out
(never drunk redbull again after a hang over redbull-wodka)
just a crazy question.........did annyone ever tried botox??
i did and was painfree (first time of my life) for a vew months
or maybe a clusterfree period.......
this i did when i still thought it was migraine
just curious if someone tried this too
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Annette
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Re: new NEW new
« Reply #6 on: Nov 4th, 2007, 9:49am » |
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Hello and welcome
For the trex to work you need to take it early, if you wait until the pain has rammed up really bad then it may not work anymore.
Start first with oxygen though as it works really well for many people for most hits. Save the trex for the really fast or bad ones that break through the oxygen.
Verapamil works well and can be slowly increased according to need, but you need your heart monitored for it.
Take care and painfree wishes to you.
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Mediocrity knows nothing higher than itself; but talent instantly recognizes genius.
Arthur Conan Doyle
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trigeminus
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thanx....
i only take 3 times 80 mg
still have to do the hart test
yesterday was a real bad day
if i feel the pain on the right side...i can gett it go away wity O2
but yesterday the pain started on the left side......
this one did not want to do anything
is not as bad as the right side though.......but it looks like that one seem more hard to kill
hope it will stay more on the right side that somehow sounds more right
if you experience a "shadow" do you feel this on the side that is painfull allready or on the oppisite
just dont want to sleep.........................now i feel ok
pain free night to all of you
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