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Topic: Another direction (Read 584 times) |
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I Cant Dance
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Another direction
« on: May 2nd, 2006, 11:32am » |
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Change in treat ment again. Get to keep trying all these things since the only effect I seem to get are side effects. Stopped topomax (allergic reaction), zomig spray does not work and gives me weird throat and chest issues. Going to Verapamil today. 
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"I can endure more pain than anyone you've ever met. That's why I can beat anyone I've ever met."
-Steve Prefontaine, "Without Limits"----Yeah Right! "I got yer pain right hiya."
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Richr8
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Re: Another direction
« Reply #1 on: May 2nd, 2006, 12:35pm » |
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I had a similar experience. although Topamax just did not mix well with my psyche. Switched back to 480mg Verapamil and all is well for the time being.
I have not used the zomig, but have had good luck with Relpax and O2.
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pf wishes,
Rich
...because yesterday is history and you never know what tomorrow will bring.
"Med free"- A few seeds and lots of O2-LG but not great.
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Garys_Girl
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Re: Another direction
« Reply #2 on: May 4th, 2006, 5:59pm » |
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My understanding is that the verapamil takes a while to work its way into your system. Are you using a Prednisone taper with that?
And I'm curious - have you tried Prednisone yet? I know it's only a short-term thing, but it seems to work for so many....'
Good luck - and still wishing you PFDN,
Laurie
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____________________________________
Laurie
"It's comin' like a freight train - can't you hear it?" - Gary
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I Cant Dance
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Re: Another direction
« Reply #3 on: May 4th, 2006, 9:05pm » |
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Yes Laurie, I have already done a pred taper...no change. It is pretty frustrating that I get relief from nothing, and that I have so many extreme side effects from triptans. As for the time thing...it is all I have at this point.
I am seeing some changes though, and hope my cycle is nearing end. I am sleeping more with 18mg of melatonin, and the hits are shorter now during the day, 1-1.5 hours instead of 2-2.5hrs.
I honestly do not know how I am sustaining myself or how I am doing this. I guess I am soo disillusioned that occupying myself during a hit helps.
It hurts so bad, it seems that something this painful should be something that kills. I hate even talking or typing about it, I can feel it just by thinking of it, and I start to tear up. Why????? Why does this happen????? What is the point of soooo much pain for 2.5 hours at a time???
I am starting to become somewhat unsympathetic to some people's pain. Like when I was talking to the personnel director for the school district I teach in and she says "I get migraines and have a good method of bringing them to a halt. Why don't you ....." WHOA... I wanted to jump through the phone, wrap my hands around her neck and say "Well good for you...you have no frickin' idea what I deal with bit@#! A migraine is child's play."
Anyway, thanks for the suggestion and sorry for the rant.
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"I can endure more pain than anyone you've ever met. That's why I can beat anyone I've ever met."
-Steve Prefontaine, "Without Limits"----Yeah Right! "I got yer pain right hiya."
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D_Robinson
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Re: Another direction
« Reply #4 on: May 4th, 2006, 9:43pm » |
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When I encounter someone who tells me how I need to handle my headache pain and they compare it to one of their lack of coffee headaches or maybe a migraine they had a year or so ago, I recommend they give sinusbusters.com a try. I tell a buddy I know named Matt just swears by them or at them.
My tolerance for stupid people is very low right now, and well if I get one of them to try it, maybe the story will make Matt's day and he has been a bit low lately and could use a funny story.
Best of Luck, and no reason to be sorry I completely understand on the rant
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RichardN
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Re: Another direction
« Reply #5 on: May 4th, 2006, 10:59pm » |
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Do you have oxygen?
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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I Cant Dance
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Re: Another direction
« Reply #6 on: May 4th, 2006, 11:47pm » |
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Richard,
Thanks for asking. Yes, I have oxygen, a high flow regulator and a clustermasx. Does not work for me  . Just pisses me off  . It is bizaar how we are all different. I wish you guys PFDAN, someone's got to have them, cuz it sure aint me.
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"I can endure more pain than anyone you've ever met. That's why I can beat anyone I've ever met."
-Steve Prefontaine, "Without Limits"----Yeah Right! "I got yer pain right hiya."
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RichardN
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Re: Another direction
« Reply #7 on: May 5th, 2006, 12:17am » |
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I'm SO sorry the 02 doesn't help you . . . I would be lost (and berserk) without it.
Sending PF vibes your way . . . . hope you get some relief soon.
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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MJ
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Re: Another direction
« Reply #8 on: May 5th, 2006, 1:57pm » |
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on May 4th, 2006, 11:47pm, I Cant Dance wrote:Richard,
Thanks for asking. Yes, I have oxygen, a high flow regulator and a clustermasx. Does not work for me . Just pisses me off . It is bizaar how we are all different. I wish you guys PFDAN, someone's got to have them, cuz it sure aint me. |
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non dancer.
Your situation sounds a bit like mine. Tried allmost every prescription med under the sun never found relief of any kind other than hi dose prednisone (160mg) taper which gave me a day or 2 off.
Excersize was and is my primary treatment, helps me through some nasty hits.
Tried the doctors and meds for 20 some years before I completely gave up on them. Then a few street drugs.
Went the next 10 or so years med free. With only the excersize to help as well as a deep mindset to convert the pain.
Last Year I decided to try one more thing and that was RC seeds found at the clusterbuster site.
It took a while with some help from here to get it right. For me there were no side effects even close to most of the traditional meds and no tripping at all.. The convenience and ease of use was pretty simple.
I was concerned about legalities at first but found it not illegal to posess the seeds here.
Allmost 2 months now without a major CH hit. Went from as many as 8-12, 2 hr hits to zero. It worked a little slower for me than others it seems, I gradually reduced my hits down in duration to none.
Since I have redosed a few times I was hit last sunday again just once after sitting next to some cheap perfume in a concert. A simple crushed 5 seed dose under the tongue and I was new again in about 15 minutes. Back in I went for the reception. I carry the seeds in my wallet and a crusher pliers in the cars just because.
The seeds are worth a look and results can be immediate. Verapamil is worth a try too but never worked for me.
I dont know the percentages of success with RC seeds but for me it was good. Maybe BB or someone can answer that.
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MJ
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I Cant Dance
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Re: Another direction
« Reply #9 on: May 5th, 2006, 7:16pm » |
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MJ,
Thanks for the tip on the seeds, I will look into that. The no relief thing is pretty tough, you know how the mindset and exercise are the only saving grace or I'd be begging for mercy . There are times though that it is not enough and I just have to scream and bang my head....really sucks and I feel like a total loser. Then I pick myself up and go at it again. Trouble is, as a hit gets to 2+ hours, I get physically tired and the body's inability to keep up with my mind's need to go get very frustrating and even depressing. That is the point of real hardship for me, knowing my body is at the breaking point while the beast is still giving me all he's got. That is when I fear. When done, I am so beat, but also feel a sense of accomplishment.
Thanks MJ, I know you know what I just said feels like. Thanks for the tip.
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"I can endure more pain than anyone you've ever met. That's why I can beat anyone I've ever met."
-Steve Prefontaine, "Without Limits"----Yeah Right! "I got yer pain right hiya."
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