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        New Message Board Archives >> Medications, Treatments, Therapies 2003 >> Not Snake Oil
        
(Message started by: Mark C on Mar 14^th, 2003, 9:29pm)

Title: Not Snake Oil
Post by Mark C on Mar 14^th, 2003, 9:29pm

Having read some more of the same posts in this area of the board about "un-proven" procedures, snake oil, etc a question came to my mind. I may already know the answer to this question but what I am wanting to know is what guidelines does one use in determining if a new and possibly effective, positive way comes around to treat CH, or any other ailment. I am not being argumentive, I really would hate to dismiss a possibly helpful treatment because of my skepticism.....which after 15 years of mis-diagnosis and mis-treatment is right there with most of you guys. However, I would like to think the medical community is working on better treatments for CH and I for one do not want to miss out.

Because of my membership in the exclusive club I feel I have a distinct advantage over most because of the wealth of experience and knowledge on this board (Thanks Ueli & Bob for starters) that I have access to. It is that very experience I am attempting to draw on now.......so how will I know when it's NOT snake oil? I don't think just because Glaxo Welcome or another huge pharmacutial company releases a new drug I should automatically accept it as a cure..should I?

Seeking guidance,
Mark

Title: Re: Not Snake Oil
Post by eyes_afire on Mar 14^th, 2003, 10:26pm

Sorry Mark, this thread got me thinking. None of this is directed toward you, it's just my ramblings based upon some observations:

In my opinion, if somebody has a treatment that may help us clusterheads they would be able to provide 2 things:

1. Evidence that it has been successful in treating clusterheads... or at least....

2. A plausible theory about how the treatment works.

There have been several unconventional treatments here that were at first met with skepticism. And some of these treatments have become accepted after lots of justified skepticism.

Sometimes people come here, proclaim a cure, and then become irritated when nobody tries it or it doesn't work for everybody (I don't understand that attitude).

Also some problems occur when people make pronouncements with an attitude: "if you would just try this, everything would be better" or worse, the implication "why are you suffering when you don't have to, you must be ignorant".

Some people simply don't understand elementary biology and make outlandish claims.

Some people can't accept the fact that certain aspects of life are beyond thier control, so in order to feel in control they may blame food, water, air, sin, or the devil.

Some people come here and don't understand what they're talking about... we're not just dealing with a headache, this is a horrible neurological disorder.

Some people come here and complain that everyone is close-minded. Sometimes these people have inverted values... they believe that critical thinking and skepticism are hallmarks of close-mindedness and that blind faith in unproven treatments are hallmarks of open-mindedness. In actuality, critical thinking and logic are essential to being open-minded. Being 'open-minded' is fine, just don't be so 'open-minded' that your brain falls out.

As a result of all this, some of these people end up belittling or demeaning our suffering (whether intentional or accidental).

Many of the regular clusterheads here have put alot of work into promoting the understanding of cluster headaches. It does none of us any good if this becomes a forum where every half-assed idea is accepted because we are afraid to hurt people's feeling (people who very well may not even have cluster headaches).

I'm not here to say that the medical community has all the answers, they don't. The system is not perfect, there is greed and corruption. But WE MUST FOCUS on finding a true cure for this disorder. If not, we run the risk of looking like a bunch of raving idiots to the people who may be able to help us the most.

I'm not saying that if someone finds an unconventional treatment, that they should not share it. Definately share it. But please spare us the drama of trying to force it down everyone's throat. Rather, subvert your ego for the betterment of the cause. Don't be offended if someone finds humour. Don't be offended if someone critisizes your treatment. It's nothing personal, we are in the FIGHT OF OUR LIVES. Woe begotten to those who demean this fight. This is not a joke, this is real life.

Title: Re: Not Snake Oil
Post by Jarvis on Mar 14^th, 2003, 11:05pm

Hey Mark - Its all snake oil. Obviously an open mind is required. I think (maybe someone will correct me) that virtually all of the current meds CH'ers use were stumbled on by accident and thru trial and error. They were designed for use in other diseases and afflictions Once these may have been snake oil too. I still think they are because they dont work for me. ie; imitrex, oxygen, verapamil, malox, cafergot, sansert, etc. etc.... the ones that have helped a little - ephedrin, lsd, methamphetimine are just too scary to mess with. Now endorphins thats where the research should go. I also believe that like the subjects below, small bits and pieces come through in every debate. It ceases to be snake oil when enuff people are convinced unfortunately. . If someone can show me a holistic method or if a pharma company comes out with a new drug specifically for clusters I am fighting my way to the front of the line. .............. . In the meantime living and learning. Good question.

Title: Re: Not Snake Oil
Post by Bob P on Mar 14^th, 2003, 11:11pm

Some times it's easier than others. Our recent vist was one of the easy ones. One look at the list of things his cure worked on was a dead give away. "I can adjust the top of your spine and relieve cereberal palsey and scoliosis or diabetes. But, I can't tell you what a cluster headache is."

We do have to remain open minded though. Eyes is right. It has to have some semblance of credibility. Shrooms for instance. A quick look at shrooms chemistry and you see the connection to serotonin. You have to say, hey, maybe there could be something to this. I don't prescribe to all of the theories about them that have been professed on this board but I do think there could be some merit in it overall.

Streneous exercise, which I myself have proclaimed. It aborted over 60 attacks in a row for me. Others show up professing the same success. Don't understand what it going on there, hyperventilation, endorphins? Just know it works for more than a few people.

Most of all I think we have to educate ourselves towhat the researchers have found through legitimate science. with this understanding, it becomes easier to recognize the maybes from the absoultely nots.

People should really read the articles in the OUCH library. If I ever get off my butt, I've 100s more to catalogue and add. These guys will be the ones to really find a cause and cure. We benifit from their knowledge.

So I guess the answer is it's ok to slam the obvious snakeoil pushers but remain open to the maybes. Sometimes that line is a little clouded so we have to err on the side of caution.

Title: Re: Not Snake Oil
Post by terrylch on Mar 15^th, 2003, 7:51am

Good LORD,
You people aren't actually going to think for yourselves are you. This is the first hint I have seen that anyone on this board might have an open mind.
-- or should I say --- a mind. I think I read where someone puts snake oil on his WINKY.
Keep up the good work.

Title: Re: Not Snake Oil
Post by DeansGirl on Mar 16^th, 2003, 11:14am

Terry,

As another newbie to the board, I would like to respectully suggest that you focus on the logic and evidence of your beliefs rather than attacking those individuals who are presenting their information. I have found that a cooperative effort always produces a synergistic effect. Attacking the audience doesn't.

Perhaps there is validity to your suggestions. Nobody will know that though, unless you respect them and thereby gain their respect.

An exchange of opinions on cures and information on causes benefits us all....even when we disagree. Attacking one another, calling each other names...benefits none.

DeansGirl

Title: Re: Not Snake Oil
Post by tanner on Mar 16^th, 2003, 11:57pm

terry, what exactly is your agenda?

i have seen more open minds and thinking people on this board than on any other forum i have experienced!
it requires an open mind to pursue a diagnosis of clusters to begin with! Didnt you go thru the , sinusitis,allergy,head trauma, brain tumor,post traumatic stress syndrome,psycological, idiopathic, unneccesary facial surgery, angiogram thru the groin area to shoot dye in your brain route to this place like i did?

didn't you travel the country to see some of the best known head docs?

havn't you begged a neuro to tell you that you DO have a tumor just so you can have something tangible to point at and blame?

didn't you try everything from fasting to feverfew to caffiene and 4 advils while standing on your head to try to just get a couple minutes away from this shit!

i'm so freakin open minded i'm half zombie right now from mass doses of neurontin and signed up for two more angio brain mri's on wed. even though i've been there and done that too many times to count.

i don't know about you but i am extremely thankful for the minds that are represented on this board, and equally pissed at the charlatans and salesmen that frequently drop by to test the waters looking for desperate souls to feed on.

you see, I am desperate and therefore vulnerable and thank god for the open minded friends in this place that attempt to steer others away from bogus cures and direct us towards stratagies that might actually help.

so whats your story terry, and who rained on your parade.

tim

Title: Re: Not Snake Oil
Post by Bob P on Mar 17^th, 2003, 8:56am

I went back over Terry's posts. It appears he is either very depressed from clusters, although I'm not quite sure I understand. It appeared in one of his posts that he had CH for 3 years, 42 years ago.

That or he's just a grumpy old man.

Title: Re: Terry's Agenda
Post by terrylch on Mar 17^th, 2003, 5:07pm

I do not get full blown CH any more. I still get them for a few weks every year or so. I have been able to abort them for over 40 years. I came here thinking I might learn something. I also thought other people might be interested in what I do to stop them. It appears I was wrong.
I was also interested in other methods of aborting them or stopping them altogether. Mainly, in case my method ever fails me.
I have never been to a chiropracter in my life. I was very interested in what he had to say, though.
In reading the posts from the newbys, it appears most everyone badmouths them without giving any reason. The beginning of this thread was very intelligent. I did a bad job of complimenting on it.
I have given up on trying to convince anyone on this board, of what I do, works. If I had suffered for as many years as many of you have, I would want to hear anything new. Evidently you have been through all of the "new" things already and have found them not to work. It would accomplish a lot more to state you have been there and done that and it didn't work for you -- Rather than call anyone an idiot and snake oil peddler. To me and probably a few more new people it sounds like you just don't want to hear it.
this is getting too long -- bye, terry

Title: Re: Not Snake Oil
Post by Ueli on Mar 17^th, 2003, 10:48pm

Here's my take how to judge possible treatments for CH:

My stake is clearly with the modern western medical science.
Why? Modern medicine is fully integrated with other modern sciences, like biology, chemistry and pharmacology, physics, mathematics. Every claim made in medicine must pass a very powerful sieve: Peer review. This review by colleagues from other institutions quickly debunks any shoddy claim, and its author may qualify for the I.G.Noble price but certainly not the more sought after prize founded be Alfred Nobel. Add to this the reviews by governmental authorities (the FDA in the US). None of the 'alternative' treatments has the sanction of the FDA.
Look at any progress in the cure or treatment of any disease, sickness, injury, defect of the human body made in the last 150 years or so: All to the merit of modern medical science, None to any alternative treatment (If anybody can name a proven, not just anecdotal, 'cure' for a medical problem from outside the mainstream medicine, I'll send my last $50.00 to OUCH.)

Now, some people are dissatisfied that the medical science can often only treat, and alleviate, symptoms and not 'cure' certain diseases. They cannot accept that for certain genetically diseases, like color blindness, early baldness, cluster headaches, diabetes type II, there is no cure (yet), and therefore they turn to all sorts of 'alternative' treatment in a hope to find a 'cure'. (BTW, it is from this corner that the main opposition to research on stem cell comes, the only promising route to cure genetic diseases.)

I for myself am satisfied that the products of the pharmaceutical industry brings great relieve for my CH: although I'm chronic for over 4 years I only went on a few occasions up to a Kip #4. But there is certainly the possibility that from a completely unexpected corner comes a treatment for CH far more efficient than what we have up to now, I am openminded on that. But I am glad that my openmindedness comes from another corner than

on 02/10/03 at 06:38:26, terrylch wrote:

I get the feeling that you and way too many of the other people on this website work for the pharmacutical companies. Do you get a few $$$ for every time you post a yahoo for a drug, or doctors?

This was a reply to my post where I put down some arguments against tractional Chinese medicine. It is typical of an ignoramus to reply with insults instead with counter arguments. No surprise either that he applauds a scam artist like Subluxationskill that utters such nonsense as The pharmaceutical octopus has brainwashed our public into believing that drugs are their only alternative. or After all of the billions of dollars that have been used for so called scientific research can you please name a disease that medicine has cured??

What is snake oil and does in my opinion not deserve a second look?

..... continued

Title: Re: Not Snake Oil
Post by Ueli on Mar 17^th, 2003, 10:49pm

continued .....

What is snake oil and does in my opinion not deserve a second look?

Homeopathy: This 2 centuries old 'art' relies on the supposed fact that water does have a memory feature, a notion that contradicts any findings of modern physics. The few success stories of homeopathy that are, of course, quoted as 'proof' are in fact the result of the self healing power of the body, enhanced by a placebo effect of the believer. But a deformed hypothalamus cannot be cured by faith alone.

Chiropractic: It was born in 1895 when Daniel David Palmer restored the hearing of a deaf by 'adjusting' a bump on his spine. Any further attempt to 'heal' deafness in this way was doomed. Today, chiropractors can bring relieve for many pains by using other treatments than adjusting the elusive subluxations. Subluxations serve only one purpose: to sell expensive X-ray pictures. A very disturbing, but remarkable, fact is that the disciples of Palmer have made no contribution to the worldwide body of knowledge shared by the health sciences and continue to isolate themselves from the mainstream of the health-care community.
The favorite web site of Subluxationskill lists more than 70 health problems that can be cured by neck wringing, from Bed Wetting to Immune System Deficiency. The open minded reader notices: The more ailments are claimed to be treatable, the larger is the number of potential suckers.

Traditional Chinese medicine relies on centuries old concepts of magical 'energies' that flow along mysterious pathways that nobody can see. These entiteties where made up in a time when the functions of the body were scarce (to completely missing) to explain the unknown (and to gain fame and money). As these outdated concepts contradict modern knowledge proved by a vast success story they are only for the ever backward minded that for some reason have an unexplainable contempt of modern science.

Food additives and vitamin supplements and similar stuff are recognized to as snake oil by their property to have a range of applications that maximizes turnover. MSM is one of the many 'wonder' drugs that has even a longer list of indications than the neck wringers list; it is even useful to combat homosexual inclinations.

Cleansing stuff is designed not to add missing stuff, but to get rid of undesirable, harmful toxins accumulating in our body. These toxins are said to accumulated in your body over the span of years, but if you spend your money for the right remedy you can get rid of them in a few days. I can understand if some simple minded are satisfied to get rid of toxins', without caring much about their nature. But an investigating mind like mine asks: If up to 5 pounds of these 'toxins' accumulate, and can be flushed out in a few days, it should be a easy thing to analyze and name at least a few of them. But on web sites trying to rob your wallet for these 'detoxing' agents, the 'toxins' have no closer specifications than being 'toxins'. The observant reader notices that, and is disturbed. Anyway, the hypothalamus of a clusterhead is not 'intoxicated' but aberrant for other reasons.

In conclusion, we should continue to look out for a inconspicuous, apparently unrelated treatment, like the shrooms. But I don't believe it is to be found in the multi million snake oil business. It would be a chance discovery, like Verapamil that was shown to have the unsuspected side effect to ameliorate cluster attacks.

Ueli, hoping to see soon some $$$ from the pharma industry :)

Title: Re: Not Snake Oil
Post by Nasser on Mar 18^th, 2003, 11:24am

"hoping to see soon some $$$ from the pharma industry"

Finally a conclusive confession

Shame shame shame

Title: Re: Not Snake Oil
Post by Dave_W on Mar 18^th, 2003, 4:16pm

Whoa! Bad Karma...

I'll have to side with Ueli and BobP on this issue -- you gotta have some rep or a sound basis, not just a story to tell or a service to sell.

Quackwatch.com has some interesting and sensible tests for hoaxes and general stupidity of theoretical cures, and it's actually served up by a chiropractor!! Here are a couple of the best tests, along with a couple of mine:

1. If the first announcement of a cure, or any scientific discovery is to the public, rather than to a group capable of serious peer review, don't buy it. In other words, if you think your upper-cervical subluxation correction therapy is good for cluster headaches, tell Dr. Goadsby's group first -- not us. (Granted, we wouldn't have our shroom therapy in this case, so exceptions can be made)....

2. If the evidence is anecdotal, don't buy it. Just because you cracked somebody's neck and their acne miraculously went away the following week does not indicate that they're related. The best thing medical science has invented in the past 100 years is the double-blind clinical test. Get with it. Did the subluxation correction actually stop the cluster headaches that one time three years ago, or was it simply the cluster cycle's normal end?

3. Anybody who posts medical stuff to the public with stupid, dumbass, ridiculous, pompous, shitty medical terms (like subluxation) without explaining what they are is 97.354% likely to be of lesser intelligence than his audience but trying desperately to prove otherwise.

4. Anbody who claims statistical evidence to five significant digits of precision needs a good, long vacation and should not be fornicated around with.

Pain Free Days, all!

The Olde Goober

Title: Re: Not Snake Oil
Post by dannyboy on Mar 19^th, 2003, 10:08am

If they ain't gonna make any money out of their opinion then it ain't.... Snake Oil

If you shut them up and they ain't gonna make money out of their opinion then you're just ...... Thought Police

One of Ueli's brown shirts.

Check the general posts section "surgical cure for cluster migraine" if you want an example, its still on the front page.

What you need to appreciate is the number of people who claimed an overlap between CH and TN and were treated like snake oil salesmen. Banished from clusterville. Two years later however, the thought police and his brown shirts have mellowed their position after being told to fuck off by doc Tom from Munich.

The thought police should go to iraq where they could soon benefit from being on the recieving end of what comes to all thought police eventually.

Myssssself on the other hand, well sssssson, I'm in it for the cas$$$$$$$$$$$h.......... hssssssss

Danny

Title: Re: Not Snake Oil
Post by Bob P on Mar 19^th, 2003, 12:13pm

Dr. Tom should go to Iraq. Oops. Forgot he's German.

I should check the list. Is SA part of the coalition Danny?

Aw, it really don't matter. You're still #1 in my book Danny.

Title: Re: Not Snake Oil
Post by dannyboy on Mar 19^th, 2003, 1:52pm

F%$# South Africa ... the way the government sees it they ain't really affected one way or another so its just a political opportunity.

I'm part of the coalition boss and that what counts. Just do it carefully, that's all I say, and so far, so bloody good.

Title: Re: Not Snake Oil
Post by jmorgan52 on Mar 25^th, 2003, 8:21am

Hi Ueli

I never claimed that a detox would rid the body of toxin build up in just a few days, and I doubt any reputable practitioner would make that claim. I did say I got relief from the CH within 3 or 4 days of starting my detox. I suffered for several weeks with stiff neck and backache amongst other aches and pains and generally feeling very shit for several weeks (but no more headaches!). After about 2 weeks I started to feel better than I had in years. A proper detox can take over a month to complete and requires supreme effort and willpower. This is beyond the capabilities of most, and is probably why people fail or are afraid of trying.

I'm really sorry you are so hung up on the medical/chemical names for these "so called toxins", but I cannot help you with that. The best I can do is to say that there are apparently thousands of so called "carcinogins" in cigarette smoke which clog the lungs and induce cancer in many, but strangely, not all people who smoke. I have never seen a list of these toxins by name either! And just as some people can eat, drink and smoke whatever they like their whole life without ill effect, others are dying in droves from cancer from it. Do you deny these poisons exist? What are the names of them? Who actually cares? (apart from you)

As for the "aberrant hypothalmus" theory. What evidence is there to prove or disprove that this so called deformity is not just the effect and not the cause of CH?

I say if you are a sufferer of CH then why not give this method a try? For fucks sake it is safer and a lot cheaper than all the drugs we CHers take! All it takes is A lot of effort.

At 51 years of age and suffering from CH, Migraines and tension HA and other headaches for my whole life I can honestly say that this past 12 months has been the longest headache free period of my life. Do you blame me for having so much faith in this cure?

John