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Topic: A Review of Nonvalidated and Complementary Therapi (Read 511 times) |
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Ueli
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Re: A Review of Nonvalidated and Complementary The
« Reply #1 on: Jan 12th, 2005, 10:48pm » |
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Thank you for this link, Helen. It makes some interesting reading. Remarkable is the Quote:Insurance barriers to care, limited availability of headache specialty clinics, and the lack of physician familiarity with the diagnosis and treatment of cluster headache contribute to create a pool of patients who may seek nonvalidated forms of treatment. |
| But that's something we already know. I summed up the positive result, from double checked to mere anecdotal: Unlabeled Uses of Prescription Medications: Botulinum 2 + 1 + 7 Baclofen 8 Methylphenidate 1 -------- total 18 In this group there will certainly be found some more useful stuff. Physical Treatments (including alternative 'medicine'): Acupuncture 1 Biofeedback 2 Chiropractice 0 Reflexology 0 Massage 0 Aromatherapy 0 -------- total 3 Can I say, I'm not surprised at this meager result or will I get the flack again from the gallery? In one respect this report is lacking. An alternative treatment with many more success stories than the meager 23 above is completely ignored. But luckily we can read about it at http://www.clusterbusters.com/. PFNADs, Ueli
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LeLimey
CH.com Alumnus New Board Hall of Famer
OUCH-US - Less "ME" and more "WE"
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Re: A Review of Nonvalidated and Complementary The
« Reply #2 on: Jan 13th, 2005, 8:56am » |
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Oh I think the report is lacking in many ways and I was disappointed in that it didn't refer to psylocibin too but its a step in the right direction at least and it was pretty well informed. Nothing much people here won't know already but its nice to see educational material that is worth reading! I'm glad you found it interesting. For myself, I liked the fact it was in "plain speak" i think more people will read and take notice that way and that can only be to the good
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The arsehole I'm divorcing needs to get a life and stop stalking mine
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Margi
CH.com Alumnus New Board Hall of Famer
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Re: A Review of Nonvalidated and Complementary The
« Reply #3 on: Jan 13th, 2005, 1:15pm » |
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Good article, Helen - thanks. Interesting, also, to note are the 6 out of 9 success stories while using Baclofen. Kinda makes ya go "hmmm...." Ironic, that the link to ch.com takes you directly to Bennie Sue's site (chhelp.org) for her self-help pages. Again, thanks for posting this. Leave no stone unturned in our search for help!
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IMHO (which in my universe is correct) kathy copelin, ch.com 8/8/06
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floridian
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Re: A Review of Nonvalidated and Complementary The
« Reply #4 on: Jan 13th, 2005, 4:37pm » |
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on Jan 12th, 2005, 10:48pm, Ueli wrote: I summed up the positive result, from double checked to mere anecdotal: Can I say, I'm not surprised at this meager result or will I get the flack again from the gallery? PFNADs, Ueli |
| You do deserve some flack. The article is not a systematic evidence-based study, so counting the number of anecdotes or citations and making numerical comparisons has little value. Further, you should not compare prescription medicines to alternative physical therapies. Logically, you should have compared prescription medicines to alternative chemical therapies that were in the article - including St. Johns Wort, Feverfew, melatonin, and magnesium. That would have given a table that is far less lopsided than the one you presented. There are 26 articles on pubmed that discuss the use of melatonin for treating clusterheadache, and a consensus that it is of value for treating some people with chronobiological disorders. Physical modalities like massage and acupuncture are better compared to conventional physical modalities like surgery. For cluster headaches, surgery may provide some benefit, but is not a predictable therapy. There are many types of surgery, most of them frequently fail to help, and they pose a significant risk of causing permanent damage. Maybe someday surgery will be more common physical treatment of clusters, but for now, it is relatively rare - a last chance option chosen from desparation, not one chosen because it has a great benefit/risk profile. Not sure where to put the physical treatments like cold and heat. Are they alternative because they are not controlled substances available only by prescription? Or are they mainstream because some doctors may advise their patients to try a cold pack or heating unit? I think that the concensus on this board is that some people do benefit from heat and cold. You gave massage a zero when in fact the article seems to give it a 1. "Gentle massage to the back of the neck and shoulders likewise is reported on a self-help web site to be of some benefit in the treatment of cluster headache [8*]." It would be silly to say that massage therapy may stop clusters, but the idea that it can provide some palliative value is significant if we are talking about people suffering from a disease, not just an abstract disease mechanism. You gave reflexology a zero when article stated "it may be possible to alleviate some of the pain by massaging this area [8*]." If we accept this statement at its face (as you suggested you did when you tallied the results), then reflexology is helpful and should have a 1. I don't know that the statement is true, but this is an approach that is safe and free, so I don't see the point in attacking it. People can try reflexology in conjunction with other preventative or abortive medicines. The article does note that acupuncture can affect serotonin levels. It does not mention research showing that it can also increase somatostatin and enkephalin levels in people with cluster headaches. So bump acupuncture up to a 3, although it is as heterogenous as 'surgery' and acupuncture hasn't proven itself as a first line treatment. A bias is likely in terms of the number of botox citations - there is lots of excitement about botox, and plenty of corporate funding for trials. Whatever happened to the person on this board who said that a doctor friend was going to do free botox for her clusters? From reading this board, I don't get the idea that botox is that effective. Remove it from your table, and you have baclofen (known to affect pain and inflammation) and ritalin vs non-pharmacological approaches which you tallied with bias. Quote: An alternative treatment with many more success stories than the meager 23 above is completely ignored. But luckily we can read about it at http://www.clusterbusters.com/. |
| I agree with you on that - any treatment that affects serotonin or other neurotransmitters (psilocybin, melatonin, choline, B Vitamins, etc) has potential, and the anecdotal evidence for psilocybin is huge. Most of these are not being investigated due to economic or political distortions in the scientific research systems; if a compound is considered illegal or has low profit potential, it is much more difficult to do research on it and most researchers don't bother. Why do a double-blind study on whether magnesium tablets can reduce headache frequency - nobody will fund it,. But they will fund a study on YAT (Yet Another Triptan) or Methyl Ethyl Newstuff, provided it is a patent medicine with profit potential. (Thanks for the link, LeLimey!)
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« Last Edit: Jan 13th, 2005, 4:46pm by floridian » |
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Ueli
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Re: A Review of Nonvalidated and Complementary The
« Reply #5 on: Jan 13th, 2005, 7:42pm » |
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Floridan, could be I did not clearly enough state what I meant. As any attentive reader of this board knows, melatonin helps many, so I didn't discuss it. On the other hand the section about caffeine is so ridiculous, it's not worth mentioning. In fact, I only considered the last 2 paragraphs. I concluded that "Unlabeled Uses of Prescription Medications" merit a closer look. In "Physical Treatments" section I gave (reluctantly) 3 points to Acupuncture and Biofeedback together. But "Gentle massage ... to be of some benefit in the treatment of cluster headache" and "it may be possible to alleviate some of the pain by massaging this area (reflexology)" would at best give some fringe befits during an attack - in the same category as head banging and shouting and much less effective than pacing. So no points here. (BTW, reflexology is another of those miraculous detours evolution took, a wonderful system of pathways of no use for millions of years until someone turned it to a money maker.) Compare acupuncture to surgery, huh? At least in the case of acute appendicitis, after a acupuncture trial the Public Attorney should get busy. I agree, botox is something to take with care (pun intended). Two years back I saw a paper from a German University that looked at all publications about botox use for meegraines. The result was shattering. Only two reports stood up to accepted standards, the others went from anecdotal to downright commercials for the treatment. Only two, not well documented, cases for CH were found. Their conclusion was: If you want to treat your headaches with botox, go to an institution doing research on it, not just any beauty surgeon. PFNADs, Ueli
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