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catlind
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Take it for what it's worth
« on: Feb 24th, 2005, 1:59pm » |
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I've been around this site for some time now, so any of you new folks who wish to pounce on me as a troll, don't bother. I received this link from someone VERY well respected here, and I'm posting the link for all to read.
Make your own decision and take it for what it's worth.
http://www.prweb.com/releases/2005/2/prweb210786.htm
Cat
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kissmyglass
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Re: Take it for what it's worth
« Reply #1 on: Feb 24th, 2005, 2:13pm » |
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I don't buy it Cat..do you?
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catlind
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Re: Take it for what it's worth
« Reply #2 on: Feb 24th, 2005, 2:22pm » |
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Kev, I don't really buy the whole story to the 'cure all' but I do know the results from the civamide trials were not all bad. Of course the varying blends in the peppers may have alot to do with it. What the trials found was that civamide (capsaicin) was more beneficial in a preventative effect than an abortive effect.
Of course it was with interest I read the part about the involvement of medicinal properties of mushrooms (I'm sure not the magic kind) with the peppers for a new spray, as there is alot of evidence to back up some of the health benefits of mushrooms.
I might have actually considered trying it myself until I read the last bit about weight loss. What is a SURE way to make millions? Claim your 'natural' (read that as no need for FDA evaluation of your statements) remedy will help with weight loss.
Reading that he is backed by Oprah is wonderful for his defensive teachings. No where do I see Oprah or her staff raving about this man's natural products.
If in fact she ever does consider having him back on her show, that is an angle we need to consider. Exposure for what we suffer will always be a good thing, and that video that Justin Ott did would be a compelling and intense means of showing what we go through.
Additionally, the guy says he smiled and carried on. Now I know that many of us can and must carry on with activities at varying times throughout our CH lives, however there is no way I have ever been able to carry on with anything when a 'bad' attack hit. I've managed to make my way through 7's without anyone knowing, (except those who know about CH and my immediate family), but anything over that is a 'bad' attack and I can't function with anything. I've left carts in grocery stores because there was no way to do anything else, so I can't imagine being on camera and filming a pepper spraying without anyone noticing the swelling eye, the runny nose, the tearing - BEFORE the pepper spray.
I am not completely discounting this, because there HAS been alot of looking by the scientific community into the properties of the various peppers. Until I've heard from several people here who I know to truly have clusters, I won't be sold on it, but I also can't discount it completely either because of the medical communities interest in this very type of substance.
Okay, how was that for fence sitting? 
Cat
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TomM
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Re: Take it for what it's worth
« Reply #3 on: Feb 24th, 2005, 2:41pm » |
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Hi, Cat!
Your fence sitting is more like an objective point of view.
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BobG
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Re: Take it for what it's worth
« Reply #4 on: Feb 24th, 2005, 3:24pm » |
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I don't believe a word of it.
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Margi
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Re: Take it for what it's worth
« Reply #5 on: Feb 24th, 2005, 3:35pm » |
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would be more believable if it was posted by Oprah's website instead of this guy's site.
What clusterhead would knowingly let someone pepper spray them IN THE EYES during a cluster attack?
I think there is something to the hot pepper abortive properties, but I think is just another marketing tool for this guy.
Thanks, though, for bringing it to us, Cat. Ya done good, kid.
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vig
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Re: Take it for what it's worth
« Reply #6 on: Feb 24th, 2005, 4:26pm » |
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alright, I'll add my $.02...
First:
Here's my hot pepper story:
I'll keep it short.
I accidentally got hot pepper oil in my eye during an attack. a WET, teary attack. Immediately, instead of pain, I felt a warm, tingly, buzz in my eye. I could feel the pepper oil moving around my eye, from the front around to the back... immediately calming the nerves, within a few minutes, the attack was over...
I've played around with this phenomena since then quite a few times and I HAVE been able to reproduce similar results.
When I tried this with a dry attack... no teary eye... I just got pain, no similar soothing. Perhaps the oil can't move around or be properly diluted.
When I tried applying the pepper oil nasally, NOTHING at all. That's why I laugh at the civamide study. It has to be administered in the eye, not up the nose. Maybe because it's directly hitting the trigeminal nerve. Also, he got pepper sprayed in the face, not up the nose. It probably got in his eye too.
I've done the oil in the wet eye trick many times and it works. on ONE attack. on one WET attack. It won't work the second time... I have to wait a few days in between. and the attacks keep coming. It worked for me as a single abortive and did nothing preventive.
Capsaicin is known to be an analgesic and it does that.
It seems to calm inflamed nerves when applied directly to the eye.
As far as the sinus buster claims that their 'mix' of peppers is unique is where the thing turns quackery to me. I've done it with several kinds of peppers and they ALL act the same. This guy's motive is money, and more power to him for trying, but that doesn't mean diddly. Frankly, Sam's Cola is just as good as Coke. (Although Pepsi still sucks  )
So I think there's merit to studying the action of capsaicin, but ultimately, it's no better than oxygen or Imitrex in that it only stops single attacks and does NOTHING for the whole condition...
Second:
"The key is incorporating the medicinal properties of mushrooms with the medicinal properties of hot peppers. "
Is he adding a legal ingredient?
Tell me another good one.
I think this guy would love to be able to sell us something we can grow ourselves...
edited to add this:
One time after a string of bad attacks, I felt like crizap...
I wasn't up to what I had to go do so I went to eat first. I had SUPER hot food. In short, my residual pain was all gone and I proceeded with my day. I've also repeated this phenomena.
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| « Last Edit: Feb 24th, 2005, 5:17pm by vig » |
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floridian
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Re: Take it for what it's worth
« Reply #7 on: Feb 24th, 2005, 4:34pm » |
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As Vig said, pepper may be of use. Not a cure, but a potential source of short term relief.
The guy who wrote that article owns the company that is selling the stuff. Anyone can put something on the prwire - it is a mouthpiece for businesses, not legitimate journalism in the sense that a reporter investigated and reported.
The sinusbuster is about hype and marketing. If you want to try pepper, I suggest you do what vig said, or eat lots of hot food.
Various mushrooms do have medicinal properties ... but his new product is still pretty secret ... kinda like the herbal product that is made from a 'green plant.' Ok, which green plant? Which mushroom?? Tell something of substance, mr. marketer.
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| « Last Edit: Feb 24th, 2005, 4:40pm by floridian » |
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cajun
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Re: Take it for what it's worth
« Reply #8 on: Feb 24th, 2005, 5:14pm » |
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Two statements made me write it off. First, when he says that clusters are similar to migaines. Second, when he claims to be in the middle of a full blown acute attack and got on stage and did a demonstration with pepper spray. When I am having a full blown attack, you could put a thousand dollars on that stage and tell me I just have to pretend I am fine to get it and I will tell you to keep you damn money.
Cajun
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Ueli
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Re: Take it for what it's worth
« Reply #9 on: Feb 24th, 2005, 6:47pm » |
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Quote:| Since Perry's formula is so complex, most researchers admit it cannot be replicated "exactly" due to the fact that SiCap uses several different pepper extracts mixed together to create what the company refers to as a "trade secret". So far the Sinus Buster formula has been studied by several well regarded chemists who say the amounts of active ingredients are miniscule that the exact formula can only be copied by mere accident - the same way Perry discovered it so long ago. |
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This writer mixes up science fiction and chemical laboratory technology of a hundred years ago, so I'm not impressed.
I agree with Cajun, Perry's knowledge about CH is a bit sketchy, almost like the candida troll of today.
But what I like least about Perry are the fucking trolls he sends to this board every few weeks. 
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sailpappy
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Re: Take it for what it's worth
« Reply #10 on: Feb 25th, 2005, 6:40pm » |
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 Hi Catlind! Long time no post I know!
I think that we have all thought we found the silver bullet in various things, this seems to me to one of those things that would fall into a "thought diversion tactic" I have used Chinese mustard buy the tablespoonfull, Tobassco, Lousianna hot sauce and everything I could imagine to try to take my mind off the onset of an attack in the hopes that it would divert the focus away from another cluster, even if it meant burning the skin off my tounge.
It worked some times, usually only once, it's going into year 36 for me and I still have an average of 7 per day. I was on verapamil for my blood pressure until about 2 weeks ago, but because i have been on such high doses in the past for Clusters it developed into another failed medication.
I have my Blood Pressure back under control now anyhow through diet and exercize, but these, especially the exercize part creates a trigger situation for my own clusters.
I will keep praying for that Golden Bullet, not the silver one! Great to see your still here, "So many new names here that I feel like a stranger! Pappy
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Gator
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Re: Take it for what it's worth
« Reply #11 on: Feb 26th, 2005, 1:29am » |
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on Feb 24th, 2005, 4:34pm, floridian wrote:The sinusbuster is about hype and marketing. If you want to try pepper, I suggest you do what vig said, or eat lots of hot food.
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We've had this discussion before, but it never hurts to rehash it once in a while. If hot pepper had any prevenative effect, I should never have started having CH. I use hot sauce with almost every meal. Tobasco, Habenero, Jalapeno, Datil and several others. I also eat jalapenos frequently. Still I suffer. Maybe it's like everything else - works for some not for others. Story of my life.
Seems to me someone posted about a study of hot peppers as a treatment and they never even finished the study because it was just too hokey and wasn't working. I'd like to read about that study if anyone has links to it.
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catlind
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Re: Take it for what it's worth
« Reply #12 on: Feb 26th, 2005, 9:30am » |
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Gator, the study was civamide trials, a capsaicin blend I think, and they did finish it. At the convention in 2003 they had just finished up but the numbers weren't available yet. Not sure what the final numbers were, but as an abortive it didn't work so well, certainly not well enough to be of any use. The preventative effects were only good for about 50% of the time and it took between 4-6 weeks for results if I remember correctly, which is pretty much a waste for someone with clusters.
Cat
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Giovanni
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Re: Take it for what it's worth
« Reply #13 on: Feb 26th, 2005, 10:01am » |
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Could the mushroom idea come from reading this board and clusterbusters.com?
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BarbaraD
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Re: Take it for what it's worth
« Reply #14 on: Feb 26th, 2005, 10:31am » |
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Another point of view..... this could have good affects on some and not on others. Remember we don't all react alike.
I may have to try this one. Heck, I've tried banana peels wrapped around my head, capsasian up my nose, hot pepper sauce -- why not one more?
But I'm keeping the O2 handy.....
Hugs BD
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pubgirl
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Re: Take it for what it's worth
« Reply #15 on: Feb 26th, 2005, 6:14pm » |
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Hey Cat
I can't try everything that might work or I would be broke and even sicker, I have to go by the recommendations of those I respect as being knowledgeable and open-minded (a rare combination) I therefore have not bothered with any of the pepper/capsaicin related possible treatments as the experts here ceased the trial after a very short time due to no useful results at all.
but I respect everyone's need to seek their own solutions
Wendy
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unsolved1
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Re: Take it for what it's worth
« Reply #16 on: Feb 26th, 2005, 6:48pm » |
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Lidocaine didn't work. Neither did liquid Cocaine. I doubt SinusBeaters would help ...
Unsolved
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catlind
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Re: Take it for what it's worth
« Reply #17 on: Feb 26th, 2005, 7:22pm » |
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Wendy,
Please please do not mistake this as me endorsing this product. I presented the link and the info more because there are some aspects of the article that could be useful to those researching various treatment options.
Some people have had success with the different strains and varieties of peppers, and the civamide trials did complete here in the US although with no useful information as far as cluster sufferers are concerned (the mode and length of time are not condusive to short term episodes).
It can be valuable to have the information presented for discussion, although the thought of a 'cure' is absolutely ridiculous.
I would think the kudzu has more potential for help than this does, but for some it can be of use.
Personally, if I try this, it will be for weight loss, not CH.
Cat
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Lizzie2
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Re: Take it for what it's worth
« Reply #18 on: Feb 26th, 2005, 7:31pm » |
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OK I didn't read the article, but I read through the thread. I just wanted to let you all know why my neuro pushes using capsacian cream so much for people with chronic, so far untreatable, clusters.
It is not used at all in an abortive sense in the proper way. It is used as a preventative sense.
The theory is to put it on the tiniest, but longest q-tip possible and to get it as high up in the nose on the affected side as possible.
Yes, it will burn in the beginning, but the burning will stop as the purpose of the capsacian is literally to KILL the nerve. So yes, it does burn until the nerve is dead.
This needs to be done about twice a day until the nerve is dead and the burning stops. Once the burning stops, then a maintenance appliance has to be started just so that the nerve does not regrow and then pain returns.
It's just a theory. I told him I refused to do it because I already have no use of the left side of my nose due to a tumor I had 8 years ago, and I refused to kill the right side too. I can't really smell.
Plus on March 8, I'm having sinus surgery to repair the damage from the tumor and that surgery 8 years ago.
Anyways....it's a theory, like anything else. It has been found to work for some. My doctor isn't selling any particular form of capsacian, and nor did he mention "sinus buster" or any of that stuff. He is a world-reknowned headache specialist as much as I often disagree with him.
Take it or leave it!
Carrie 
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forgetfulnot
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Re: Take it for what it's worth
« Reply #19 on: Feb 26th, 2005, 9:59pm » |
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If any of this pepper crap were true, Mexicans would not have clusters. However I have no idea if they do or not
Lee
Add Lizzie2 will give birth in 2 months and 4 weeks, hope it's a girl! 
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| « Last Edit: Feb 26th, 2005, 10:25pm by forgetful » |
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