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Topic: The docs are watching us! (Read 617 times) |
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Dave_W
New Board Junior
Pain Free Days!!!
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Posts: 83
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The docs are watching us!
« on: Nov 13th, 2002, 1:22pm » |
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Hiya Gang!
I've been lurking for about a year rather than being a responsible poster -- but the beast is back with me for a while it seems, and I always come running back to the cluster board when he's after me.
It's kinda severe this year, lots of 9's and 10's, lots of oxygen and imitrex ($$) so off to the doc I went to see if a new and wonderful cure had been found. I had started Verapamil, added lithium, and no good results yet. He wanted me to add sansert to the mix, which is cool by me (worked a few years ago) but I found that Novartis has stopped making it -- with no explanation. When I talked to him again, my doc fessed up that he was probably not current on clusters, and he said he'd write me a scrip for whatever -- he suggested I do a thorough web search and call him back.
I started with the cluster board of course, but with google I found dozens of sites that have been put up by headache centers and pain specialists. I didn't save them all, but most of them listed preventive therapies that match up really well with the statistics in the cluster survey on this site. To my surprise, two of them even cited the "...cluster survey at www.clusterheadaches.com" as evidence that their prescription recommendations are valid! One quote I saved is, "...while it is not clinically controlled, the survey shown at www.clusterheadaches.com is felt to be significant as it represents the only large sample of sufferers, self-diagnosed or otherwise".
They all seemed to support the regimen of verapamil, then add lithium, then add sansert, then add depakote, and along the way do a prednisone burst or two to keep them under control until the other meds take effect (or not). If you glance at our survey statistics, these are the most successful meds we discuss.
If you have ideas for more specific such surveys, post them here or give a shout to an O.U.C.H. member! It seems that the medical community is believing in us.
I know this is long, but I'd like to tack on one more comment on some of the alternative meds that people try (i. e., hallucinogens, amphetimines, coke, etc...). I'll echo Bob P's sentiment in another post by saying that when you're having a 10, do what works -- even if it means sticking carrots up your butt  . But be extra cautious -- there's not only danger in the quality and strength of what you're buying, I understand it's damned hard to get oxygen, imitrex, or any other good abortive meds in the jail. 
Pain Free Days, all!!
Old Dave W
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Old Decrepit Dave
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Bob P
New Board Hall of Famer
Shut up Bob!
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Re: The docs are watching us!
« Reply #1 on: Nov 13th, 2002, 4:58pm » |
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That's super cool Dave!
John Graham said it at the Atlanta convention. The most powerful resource we have, the thing that will interest the medical community the most, is us. The sufferers and the database we represent.
The doctor that Maria heard back from, in the other months homework assignment, was most interested in the surveys.
I really think this is another area we need to concentrate on.
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| « Last Edit: Nov 13th, 2002, 4:59pm by Bob P » |
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Mrs. Barlow, I never, and I repeat never, ever pissed in your steam iron.
"SHUT UP HUB!"
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Darkelf
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Re: The docs are watching us!
« Reply #2 on: Nov 19th, 2002, 11:33am » |
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Hey guys,
For what its worth, I tried search for anything on straight up topamax and found only two entries in the archieves. I just started treatement and am a newbie to this and would me more than welcome to keep a log on the treatment. Would probably do me some good as well. What you think? Let me know if you think if it would be of any good.
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gtar_man
New Board Junior
I love YaBB 1G - SP1!
Posts: 78
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Re: The docs are watching us!
« Reply #3 on: Nov 19th, 2002, 3:36pm » |
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Darkelf - have at the Topamax if you can stand it - I couldn't. 4 days into it I was a nervous wreck, and some others here have had similar results  .
Dave- another problem with the jail thing is the other inmates might be bothered while you're rolling around the floor pulling your hair and screaming... ;D
However, one has to do what one has to do and if it works, it works  .
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I'm not a damn newbie! I just changed ISP's!
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Darkelf
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Re: The docs are watching us!
« Reply #4 on: Nov 19th, 2002, 5:12pm » |
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Gtar_man:
So far its been a kiddies roller coaster ride for me. It was hard punch thru the first four weeks, because there just doesnt seem to be a whole lot of instant relief. But I am not real bad....just episodal...about 2 maybe 3 CH a day for last 3 months goin on 4. I'll start it and you all can be the judge. If you think its worth, fine. If not pull the plug on it, no hard feelins here.
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dannyboy
New Board Old Timer
Docs didn't design the machine they're working on
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Re: The docs are watching us!
« Reply #5 on: Nov 19th, 2002, 6:44pm » |
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The boss ain't the boss for nothing! Or wasn't the boss for nothing. In fact no, he'll always be the boss. Don can be the King.
Is Don King yet?
I agree too Dave_W.
This site is an example of the future of medicine on this planet
Not for profit
Processes information a googleplex times faster than the worlds best university
Melting pot for all discplines, cultures, views
Keeps out scum. Or kept out scum. Whats with these newbies?
Although me and Ted are still here so I'm not sure about the keeping out scum bit.
Could some one tell me Exactly what a Hub is and why he keeps going on about $heep?
Is he Australian?
Boss, my mug arrived, bless ya. Also I traced Ekbom and he's retired. Damn! I'll come up with someone soon.
Danny
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| « Last Edit: Nov 19th, 2002, 6:45pm by dannyboy » |
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Bedside manner is no substitute for a correct diagnosis - Bill Gates
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