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Title: Re: new NEW new Post by thebbz on Nov 3rd, 2007, 6:42pm Good post welcome thebb |
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Title: Re: new NEW new Post by ski2k on Nov 3rd, 2007, 7:09pm 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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Title: Re: new NEW new Post by Shedz on Nov 3rd, 2007, 7:38pm Welcome to the nuthouse ;;D |
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Title: Re: new NEW new Post by MR_FLOOR on Nov 4th, 2007, 1:44am 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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Title: Re: new NEW new Post by RichardN on Nov 4th, 2007, 2:47am 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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Title: Re: new NEW new Post by trigeminus on Nov 4th, 2007, 8:56am 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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Title: Re: new NEW new Post by Annette on Nov 4th, 2007, 9:49am 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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Title: Re: new NEW new Post by trigeminus on Nov 5th, 2007, 10:25pm 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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