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Topic: IMPORTANT! Don't make our mistake! (Read 690 times) |
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jrmom
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IMPORTANT! Don't make our mistake!
« on: Jun 22nd, 2007, 4:11pm » |
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I may be behind in my Cluster Research and this may be commonly known among the 2007 chronic clusterheads, however I did not. Do you know that when you become chronic, and the neurologists decide you are simply rebounding from the triptans and START you on Oxycontin E.R., that when you discover that the Oxy doesn't work and they finally help you acquire Sansert for compassionate use, IT AND OTHER VASOCONSTRICTORS AND OTHER MEDICATION'S ARE RENDERED USELESS???? You CANNOT start with Oxycontin, and remain on it, for other medications that are used as abortives. It just doesn't work that way. This was an incredibly tough, needless lesson to learn. We listen to our neuro's. And I mean that pleural. I was dumbstruck when the 3rd neurologist asked "was she started on the Oxycontin E.R. first or the Sansert first. "Oxycontin" I belted out. His GROAN was audible. as he explained that Sansert CAN'T work with Oxycontin taking up all the receptor sites.
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Linda_Howell
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Re: IMPORTANT! Don't make our mistake!
« Reply #1 on: Jun 22nd, 2007, 5:33pm » |
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As hard as it may be to do when one is hurting...We MUST do our research. That is the reason why O.U.C.H. and this site exists. Thousands of hours went into compiling all the data that is here and on OUCH.
Dr.s get exactly 5 hours of training on all different types of headaches in college. 5 HOURS!!!!!!!!
http://www.ouch-us.org/index.shtml
Linda
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Brew
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Re: IMPORTANT! Don't make our mistake!
« Reply #2 on: Jun 23rd, 2007, 9:10am » |
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I've used short-term opiates for post-surgical pain as well as methysergide maleate on at least 5 or 6 different occasions for CH. Last time I used the methysergide it worked just fine. I don't think my body knows why I would use one or the other, but they both work just fine when I need them to.
Point being, neither has been rendered useless to me. So I guess what you're reporting would be one doctor's opinion.
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jrmom
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Re: IMPORTANT! Don't make our mistake!
« Reply #3 on: Jun 23rd, 2007, 9:26am » |
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No, not really. I completly agree with you on the short acting "rescue" med's. The point that I am trying to make is this...if your doctor STOPS all triptans, next, starts you on high doses of Extended Release Oxycontin, that 10 day's-2 weeks later, you get your methergine, that is when you will discover it won't work.
That is the point I'm trying to make. It's what is in the Oxycontin, if that is what is started first.
Thanks, jrmom
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Kevin_M
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Re: IMPORTANT! Don't make our mistake!
« Reply #4 on: Jun 23rd, 2007, 9:28am » |
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on Jun 22nd, 2007, 4:11pm, jrmom wrote:| Sansert CAN'T work with Oxycontin taking up all the receptor sites. |
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I read a recent similar point being made here by information from the Clusterbusters, perhaps BobW, if I'm not mistaken.
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purpleydog
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Re: IMPORTANT! Don't make our mistake!
« Reply #5 on: Jun 23rd, 2007, 9:52am » |
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on Jun 23rd, 2007, 9:28am, Kevin_M wrote:
I read a recent similar point being made here by information from the Clusterbusters, perhaps BobW, if I'm not mistaken. |
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Kevin, I read the same post, and I wish I could remember where it was here, I'd post a link to it.
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purpleydog
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Re: IMPORTANT! Don't make our mistake!
« Reply #7 on: Jun 23rd, 2007, 10:27am » |
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Thanks Patti. I've copied the relevant post BobW made.
on Jun 17th, 2007, 3:19pm, [Pinkfloyd wrote:
Mike,
I have no argument with what you said. I agree and I guess I am trying to bite back...but...
The morbidity rate on open brain surgery is about 1%. One out of 100 will die on the table. Whether it is from hemmorage, anesthesia problems, infection, etc.....
My problem is that some of these doctors are trying to treat clusters with their specialty, even if it isn't the next best option. Go to a Neurosurgeon and he will come up with an operation that he says is the best option. Go to a Nutritionalist and they'll put you on a diet that will "do the trick." Not withstanding the fact that they may have very little knowledge about clusters or the complicated "mess" we find ourselves in.
An example came up just this week that I reported to the other clusterbusters.
A young women was in very bad shape with chronic clusters. (very bad shape)
She saw two "top" neurologists in Tx. "headache specialists"
To make a long story short.....
They put her on oxycontin and then tried Sansert which had worked for her in the past. Things got progressively worse. 
Dr. 2 upped the oxy. 
Sansert still had no effect. 
Their next options were;
1) Trigeminal nerve rhizotomy.
2) ONSI
She was told she must not have enough serotonin receptors in her brain and surgery was her only option. She was told that if sansert didn't work, she was at the end of the road with prescription medication options. She was told that if she tried psychedelics, she'd be cut lose from further treatment.
She was told that she should donate her brain to science when she dies. 
You know why the Sansert didn't work? The answer can be/was, found on clusterbusters FAQ.....
She then went to see a "real" expert on clusters, Dr. Matthew.
He detoxed her off the oxy.......and the Sansert worked.
Sansert is very close to psilocybin and LSD. Narcotics block the action of psychedelics.
Dr. Matthew knew this.
As I said before, there's 100 people here that knew that.
The girl is cluster free and still has all her nerves in tact and can still walk through the metal detectors at the airport without a problem.
As you know Mike, I am all for research. I just question the motives, tactics and patient selection of some of them.
Bobw
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