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Topic: Pepper Spray for CH's (Read 706 times) |
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BlueMeanie
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Hi fellow Clusterheads.
NO. I'm NOT selling pepper spray. You people that know me, know I don't believe in any of those concotions out there. Imitrex & O2 only for me.
My question is with Porkchop and others out there all trying to get us Clusterheads to try pepper spray and swearing up & down that it works, has anyone tried it ?
I have never tried it and was wanting some facts about it's supposedly wonderful cure for fighting the Beast.
Would like responses from people who have acutally tried it, not just the people bashing it.
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snyder
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Nothing can hurt me as much as my head.
  
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Re: Pepper Spray for CH's
« Reply #1 on: Mar 16th, 2004, 6:42pm » |
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I'm one of the suckers. I have a a bottle of the stuff right here. Looks great. Does nothing. After 15+ weeks of this beast I was/am ready to try ANYTHING else/more and one day in weakness I fell for it. I am smarter than this. Or, at least I thought I was. I have bats in my attick ... I bet their guano would do me just as well. There isn't even a good plecebo effect from the stuff
Nice white bottle though.
Bill
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"Comedy is the last refuge of the nonconformist mind." -- Edward Albee
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t_h_b
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Re: Pepper Spray for CH's
« Reply #2 on: Mar 16th, 2004, 6:54pm » |
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I've snorted pepper sauce. Did nothing but burn my nose.
Anyway, capsaicin is NOT reputed to be an abortive and takes at least a week to be effective. It's supposed to use up the neurotransmitter chemical Substance P that's involved with pain.
I also seem to recall some fairly negative to neutral comments from those who were involved with the clinical trial for intranasal capsaicin.
Lidocaine works quickly and burns a lot less. I can vouch that it is helpful at reducing pain and sometimes even aborting headaches. I've snorted many a tube of lidocaine ointment.
WSnyder, I apologize again for giving you such a hard time the last time this subject came up. PorkChop/PigCrap apparently disappeared when found out.
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No, it's not a headache--it's a Stage Ten Primary Chronic Periodic Idiopathic Trigeminovascular Cephalalgic Crisis.
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pubgirl
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Re: Pepper Spray for CH's
« Reply #3 on: Mar 16th, 2004, 7:02pm » |
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This is going to be an unpopular reply but on the OUCH site we have a genuine sufferer who states it has worked for them clearing shadows and low level attacks.
She is saying very clearly that she has felt much better since using it.
Of course it could be placebo effect or these may not have been CH attacks, possibility of being migraine type headaches instead, but this is a longer term sufferer who should know what a CH attack is.
Wendy
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snyder
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Nothing can hurt me as much as my head.
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Re: Pepper Spray for CH's
« Reply #4 on: Mar 16th, 2004, 7:06pm » |
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Like we can all say, "nothing can hurt me as much as my head." No apology is necessary. I was new that day and understood what happened. It took me awhile to figure out how to smooth it all out.
Thanks for the welcome, too. I want to be part of this. I NEED it, too.
Bill
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"Comedy is the last refuge of the nonconformist mind." -- Edward Albee
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snyder
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Re: Pepper Spray for CH's
« Reply #5 on: Mar 16th, 2004, 7:12pm » |
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I am a long term sufferer as well. Almost 45 years. (Somehow there isn't any pride in this.)
Bill
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"Comedy is the last refuge of the nonconformist mind." -- Edward Albee
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t_h_b
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Re: Pepper Spray for CH's
« Reply #6 on: Mar 16th, 2004, 7:17pm » |
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on Mar 16th, 2004, 7:02pm, pubgirl wrote:This is going to be an unpopular reply but on the OUCH site we have a genuine sufferer who states it has worked for them clearing shadows and low level attacks.
She is saying very clearly that she has felt much better since using it.
Of course it could be placebo effect or these may not have been CH attacks, possibility of being migraine type headaches instead, but this is a longer term sufferer who should know what a CH attack is.
Wendy |
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No, I am VERY glad that it's working for her, for whatever reason. It is the hucksterism that is objectionable. My neuro recommended that I try the creme. (I think it's called Zostrix or similar and is really for herpetic neuralgia.)
Also, NEVER underestimate the placebo effect. I once knew a patient with a lot of pain who got IV morphine that helped. Flushing out her heplock with saline had the same effect--almost instant relief, and she'd fall asleep.
The doctor even prescribed saline injections for her in between the morphine injections--we would say, "this is for your pain", not, "here's your pain medication". I was taught that it is unethical to administer placebos to an unknowing patient but it would have been unethical and cruel NOT to have given it to her under the circumstances--she was getting about all the morphine she could handle without depressing repiration.
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| « Last Edit: Mar 16th, 2004, 7:22pm by t_h_b » |
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No, it's not a headache--it's a Stage Ten Primary Chronic Periodic Idiopathic Trigeminovascular Cephalalgic Crisis.
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t_h_b
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Re: Pepper Spray for CH's
« Reply #7 on: Mar 16th, 2004, 7:18pm » |
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on Mar 16th, 2004, 7:12pm, wsnyder wrote:I am a long term sufferer as well. Almost 45 years. (Somehow there isn't any pride in this.)
Bill |
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And someone who's lived with this for 45 years deserves a lot more repect than I gave you.
Here's to another 45 years--but pain free.
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No, it's not a headache--it's a Stage Ten Primary Chronic Periodic Idiopathic Trigeminovascular Cephalalgic Crisis.
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snyder
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Re: Pepper Spray for CH's
« Reply #8 on: Mar 16th, 2004, 7:23pm » |
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To t_h_b:
All is cool!
Thanks.
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Filbert
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sRe: Pepper Spray for CH's
« Reply #9 on: Mar 16th, 2004, 7:51pm » |
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After reading most of the posts on this subject I can only conclude one thing- Its worked for a small minority of people -and good for them! but for most people it doesn't.It just incinerates their nose.Typical CH Its 100% inconsistent!!
Filbert
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| « Last Edit: Mar 16th, 2004, 7:53pm by Filbert » |
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Lizzie2
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Re: Pepper Spray for CH's
« Reply #10 on: Mar 16th, 2004, 8:50pm » |
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on Mar 16th, 2004, 7:17pm, t_h_b wrote:
Also, NEVER underestimate the placebo effect. I once knew a patient with a lot of pain who got IV morphine that helped. Flushing out her heplock with saline had the same effect--almost instant relief, and she'd fall asleep.
The doctor even prescribed saline injections for her in between the morphine injections--we would say, "this is for your pain", not, "here's your pain medication". I was taught that it is unethical to administer placebos to an unknowing patient but it would have been unethical and cruel NOT to have given it to her under the circumstances--she was getting about all the morphine she could handle without depressing repiration. |
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Really good point T_H_B,
I was speaking with a good friend of mine who is a psych resident at Jefferson, and she said she listened to someone speak on this very topic. The issue was....what is really wrong with having the placebo effect? We all think of it as a bad thing, but it just goes to show the power of the mind to help us heal. And whatever brings the healing, bring it on!
This is NOT to say that the placebo effect and your own thinking can cure everything. Or else we wouldn't have clusters and we wouldn't get sick!! But, I do think the mind can play an important role in our well-being.
Lizzie 
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Kevin_M
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Re: Pepper Spray for CH's
« Reply #11 on: Mar 16th, 2004, 11:36pm » |
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Well,
I wouldn't wish to try a placebo effect on clusters. 
Kevin M
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FZfan
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Re: Pepper Spray for CH's
« Reply #12 on: Mar 17th, 2004, 12:05am » |
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Surely the placebo effect, like most everything else it seems, would quit working at some point. But as long as it's working, what the hell?
To me, the pepper spray doesn't make sense scientifically. I can abort with o2 and it doesn't burn my nose.
On the other hand, I can understand someone who is getting no relief by any means spending the 10 bucks to give it a try. Let's face it, at that point you will try ANYTHING whether it makes sense or not and no one should feel bad for giving it a try.
Having said all of this, porkchop was still a snake oil cretin. No doubt about it.
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sandie99
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Re: Pepper Spray for CH's
« Reply #13 on: Mar 17th, 2004, 4:06am » |
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One nasty thing about this beast is that what works for one might not work for someone else. Why can't we just have nice med, which would work for all? That's my dream...
Anyways,
PFdays to all!
sandie99
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CH happends, Live anyway! PF days to us all!
"Do what you can and let God take care of the rest. Leave your heart wide open and always wish for the best" (Sanna Hillu)
"No matter how far out your dreams are, it's possible" (Marketa Irglova)
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t_h_b
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Re: Pepper Spray for CH's
« Reply #14 on: Mar 17th, 2004, 5:30am » |
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The placebo effect is not a bad thing on its own. Sometimes placebos are even more effective than standard treatments. Telling a patient that an effective pain medication is being administered enhances its effect. It is the deceptive use of placebos that is objectionable for ethical reasons. Trust is very important between health care providers and patients.
In the case I was involved with, the IV injection was the only thing that helped the patient and she frequently begged for it. I could not tell any difference in her reaction to morphine and saline. She had an incurable condition and her husband was aware of the use of placebos. The only time that poor woman was happy was when her little dog came to visit.
The placebo helped the MDs and RNs in this case, too, by allowing us to do something to help the patient. It's very frustrating to watch someone suffer and not be able to do anything to help.
I wouldn't want someone giving me saline inhalers for my CH, either. Even in the clinical trials like the one for intranasal Zomig, where the subject has been informed that a placebo may be administered, a "rescue" medication is allowed after 30 minutes.
There is also the idea that new treatments should be compared to the best available treatment and not to a placebo so that subjects don't go untreated. For instance, the intranasal Zomig could be compared to intransal Imitrex instead of intranasal saline.
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| « Last Edit: Mar 17th, 2004, 5:32am by t_h_b » |
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No, it's not a headache--it's a Stage Ten Primary Chronic Periodic Idiopathic Trigeminovascular Cephalalgic Crisis.
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Lobster
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Re: Pepper Spray for CH's
« Reply #15 on: Mar 17th, 2004, 6:24am » |
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I have thought of using pepper spray on people who phuck with me when I am having a CH. We cannot dismiss such potential therapeutic value out of hand.
Same goes for 'nerve stimulators', aka stun guns.
Rock
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BobG
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Re: Pepper Spray for CH's
« Reply #16 on: Mar 17th, 2004, 6:29am » |
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Hey Rock...I like the way you think.
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Lizzie2
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Re: Pepper Spray for CH's
« Reply #17 on: Mar 17th, 2004, 7:40am » |
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T_H_B,
I totally agree with you on that one. I think people would start getting really paranoid if they had to wonder if their doc was giving them a placebo or not every time they got their meds.
That's interesting what you say about the clinical trials. I'm glad the zomig trial allows for a rescue med after 30 minutes.
On many of the studies I observed and worked on at Jefferson, the patient was informed that they may be getting a placebo, but they didn't use another abortive or rescue med on top of it. The Botox study going on there now is pretty interesting. Each patient gets it 3 times...free of charge, but it very well could be a placebo.
I like the idea of comparing it to a med already in use and helpful.
Lizz
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thomas
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Re: Pepper Spray for CH's
« Reply #18 on: Mar 19th, 2004, 1:52pm » |
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I have shoved so much damned hot sauce up me nose in the past, like back in 2001 and 2002 hell even tried it again in 2003. Got my face really hot, made me cry more than the ch did. (not from pain). Not much luck with that, would assume the spray would be no different, and as far as capscacium being used as a preventive....... well I eat something hot EVERYDAY, and I still get clusters........ so I don't think it does much for me, except wake up boring food.
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