Click this link to read a post I like on the clusterheadaches.com message board...

thebbz Ex Member	Re: Something that works, at last Jul 16^th, 2008 at 1:20pm Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to or Check it out here. thebb
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-johnny- CH.com Sponsor Offline theres no smoking on the dock Posts: 1642 fayette county ohio Gender:	Re: Something that works, at last Reply #1 - Jul 16^th, 2008 at 1:31pm fgalend wrote on Jul 16^th, 2008 at 1:13pm: a steroid nasal spray for allegies. . whats an allegie??
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George

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Re: Something that works, at last
Reply #2 - Jul 16^th, 2008 at 1:45pm

I dunno. GSK would really have to be scraping the bottom to troll a message board in order to drum up business.

How's their stock doing? Wink

Sorry, fgalend--but when we get a new member whose first post touts the benefit of something-or-other, it triggers the sniff test. We've had way too many snake-oil salesmen and nostrum-peddlers stop by.

Are you saying that this nasal spray acts as an abortive to stop an individual attack, or that it appears to act as a preventive?

Best wishes,

George

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"Whoever loveth me, loveth my hound." (Thomas More, author of "Utopia", and Chancellor of England. 1477-1535)

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Brew Ex Member	Re: Something that works, at last Reply #3 - Jul 16^th, 2008 at 1:56pm It actually doesn't work as well as Nasonex does for me, but I don't use it for CH. I use it for *ALLERGIES!* Jeepers H.
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-johnny- CH.com Sponsor Offline theres no smoking on the dock Posts: 1642 fayette county ohio Gender:	Re: Something that works, at last Reply #4 - Jul 16^th, 2008 at 2:09pm you know 4 way worked pretty good to open up my sinuses before i went to sleep. that and those nasal strips would get me more than the usual 45 minutes of sleep. i don't know that if it works for an abortive though.
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George

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Re: Something that works, at last
Reply #5 - Jul 16^th, 2008 at 2:51pm

fgalend wrote on Jul 16^th, 2008 at 2:41pm:

This is fgalend, you'll all have to excuse me. I haven't visited this web site since 2001 as there was no new info on it. I find something that works and want to share it and the response is childishness. Couldn't care less, you all enjoy your pain, you belong together.

Got your e-mail--which is fine.

Take another look at the responses before you get tetchy, eh? It's just barely possible that you're overreacting. Questions aren't criticisms, and critical questions aren't attacks.

But...do as you will.

Again...best wishes,

George

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"Whoever loveth me, loveth my hound." (Thomas More, author of "Utopia", and Chancellor of England. 1477-1535)

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-johnny- CH.com Sponsor Offline theres no smoking on the dock Posts: 1642 fayette county ohio Gender:	Re: Something that works, at last Reply #6 - Jul 16^th, 2008 at 3:37pm maybe fgalend could have worded his first post a little bit differently perhaps. maybe he could have asked us if any of us have tried veramist instead of website links and $$$ signs. i don't think it's childish to be skeptical of somebody that only has one post.
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Jeannie CH.com Sponsor Offline Live, Laugh, Love.... Posts: 2333 St Louis, Missouri Gender:	Re: Something that works, at last Reply #7 - Jul 16^th, 2008 at 4:14pm Just wondering about a previously asked question................. Does Veramyst help you as an abortive or a preventative? Jeannie
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George

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Re: Something that works, at last
Reply #8 - Jul 17^th, 2008 at 12:33am

Jeannie wrote on Jul 16^th, 2008 at 4:14pm:

Just wondering about a previously asked question................. Does Veramyst help you as an abortive or a preventative?

Jeannie

From his e-mail reply, I gather that he uses it once a day as a preventive, and not an abortive.

That's all the insight I have on it.

Best,

George

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"Whoever loveth me, loveth my hound." (Thomas More, author of "Utopia", and Chancellor of England. 1477-1535)

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Jeannie CH.com Sponsor Offline Live, Laugh, Love.... Posts: 2333 St Louis, Missouri Gender:	Re: Something that works, at last Reply #9 - Jul 17^th, 2008 at 9:12am Just wondering guys, Is it at all possible that Ch could somehow be triggered by allergies? I mean there are certainly other known factors that trigger hits. If so, maybe an allergy med could help. Hey.... Go easy on me with your responses... I'm a girl! PF wishes! Jeannie
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Charlotte

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Re: Something that works, at last
Reply #10 - Jul 17^th, 2008 at 9:51am

Jeannie, we don't actually know what causes.

On heavy hit days, I usually take 3 benedryl, along with verapamil & indocin (for ph) and it helps me cope by eliminating some of the drips etc. It may also help by relaxing me - I've noticed my coworkers falling asleep with 1 benedryl. It doesn't stop the actual hits, though, but it helps me feel better.

Charlotte

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« Last Edit: Jul 17^th, 2008 at 9:56am by Charlotte »

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Jeannie CH.com Sponsor Offline Live, Laugh, Love.... Posts: 2333 St Louis, Missouri Gender:	Re: Something that works, at last Reply #11 - Jul 17^th, 2008 at 9:57am I am going to try the Benedryl next time around. Especially at night. Thanks Charlotte!
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George

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Re: Something that works, at last
Reply #12 - Jul 17^th, 2008 at 10:01am

Hi Jeannie,

Speculatin' time. <smile>

Far as I know, no one's done any serious research on any sort of immune component in CH. So we're on our own, as we are in so many things having to do with this stuff.

Early on, I often wondered whether CH was some sort of allergic reaction--not something triggered by an outside allergen, necessarily, but perhaps an autoimmune response. My mother has lupus, after all...maybe something there?

I rather doubt it, though...CH seems to have few of the characteristics of autoimmune conditions.

As far as external factors that trigger an immune response, seasonally, well...I never could figure out anything it might be. Moving to a completely different area of the country with completely different plant communities made no difference whatsoever, and one of my two cycles each year inevitably began in late October and extended into December--when environmental allergens were less prevalent.

So--purely on an anecdotal basis with no evidence whatsoever, can I definitely say that there is not a component of CH that involves an immune system response?

No. But I rather doubt that allergens or immune responses have much to do with it.

Best wishes,

George

P.S.--Spent some time last night looking at off-label uses for Veramyst, and could not find any mention of treatment for headaches of any kind. One of the possible side effects of using the drug is listed as "headache".

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"Whoever loveth me, loveth my hound." (Thomas More, author of "Utopia", and Chancellor of England. 1477-1535)

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Jeannie

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Re: Something that works, at last
Reply #13 - Jul 17^th, 2008 at 10:10am

George wrote on Jul 17^th, 2008 at 10:01am:

Hi Jeannie,

Speculatin' time. <smile>

Far as I know, no one's done any serious research on any sort of immune component in CH. So we're on our own, as we are in so many things having to do with this stuff.

Early on, I often wondered whether CH was some sort of allergic reaction--not something triggered by an outside allergen, necessarily, but perhaps an autoimmune response. My mother has lupus, after all...maybe something there?

I rather doubt it, though...CH seems to have few of the characteristics of autoimmune conditions.

As far as external factors that trigger an immune response, seasonally, well...I never could figure out anything it might be. Moving to a completely different area of the country with completely different plant communities made no difference whatsoever, and one of my two cycles each year inevitably began in late October and extended into December--when environmental allergens were less prevalent.

So--purely on an anecdotal basis with no evidence whatsoever, can I definitely say that there is not a component of CH that involves an immune system response?

No. But I rather doubt that allergens or immune responses have much to do with it.

Best wishes,

George

P.S.--Spent some time last night looking at off-label uses for Veramyst, and could not find any mention of treatment for headaches of any kind. One of the possible side effects of using the drug is listed as "headache".

Thanks George! You know what's funny? I get sooooo mad when my husband says " Maybe it's allergies." And here I am wondering the same thing! Obviously it is not just some run of the mill allergy HA. I wish!

Sometimes I think that people, me included, are just desperate for some hope in curing these things!

PF wishes'

Jeannie

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« Last Edit: Jul 17^th, 2008 at 10:31am by Jeannie »

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Jeannie

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Re: Something that works, at last
Reply #14 - Jul 17^th, 2008 at 11:11am

Hi, Sorry to be posting again.

I've just been thinking a lot about this thread. Okay, so allergies aren't a likely trigger. What is it about certain foods that trigger hits. Alcohol, I know affects the blood vessels so I understand that one. What about MSG? I am fairly sure that MSG has intensified my HAs. Not sure if it actually caused it but I sure have had some kip 10s after consuming it.

Jeannie

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"It's all a grand illusion when you think you're in control." ~ Kenny Chesney

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-johnny- CH.com Sponsor Offline theres no smoking on the dock Posts: 1642 fayette county ohio Gender:	Re: Something that works, at last Reply #15 - Jul 17^th, 2008 at 12:16pm i remember one time i sneezed a couple of times and that triggered an attack. nitrates (hot dogs) and chocolate can set me off. i have never tried Benedryl but i did use nyquil. all that did was make me drowsy. it didn't help me with sleep.
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TomM

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Re: Something that works, at last
Reply #16 - Jul 17^th, 2008 at 12:17pm

Jeannie wrote on Jul 17^th, 2008 at 11:11am:

What is it about certain foods that trigger hits. Alcohol, I know affects the blood vessels so I understand that one. What about MSG? I am fairly sure that MSG has intensified my HAs. Not sure if it actually caused it but I sure have had some kip 10s after consuming it. Jeannie

I find that food w/ MSG and any processed food (read that as preservatives...processed luncheon meats, etc.) are an immediate trigger.
Anymore, I am sensative to many smells whether I am in cycle or not in particular with garlic. Puts me into immediate Kip6/7.
TomM

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monty

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Re: Something that works, at last
Reply #17 - Jul 17^th, 2008 at 12:26pm

Jeannie wrote on Jul 17^th, 2008 at 9:12am:

Just wondering guys,

Is it at all possible that Ch could somehow be triggered by allergies?

Or is it possible that a steroid nasal mist might prevent hits in some people - steroid tablets and injections are accepted as preventives. Maybe a low dose spray would be less effective (but useful for some people, with fewer side effects). Dunno.

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« Last Edit: Jul 17^th, 2008 at 12:27pm by monty »

The outer boundary of what we currently believe is feasible is far short of what we actually must do.

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mezza CH.com Alumnus Offline I love YaBB 1G - SP1! Posts: 415 north carolina Gender:	Re: Something that works, at last Reply #18 - Jul 18^th, 2008 at 12:12am I had a doctor once who gave me nasonex as an abortive. Nasonex did nothing to help the CH for me. His thought was that since my pred taper did stop them and didn't want keep me on the preds he prescribed the nasonex which has steroids in it. This was very early on in this past cycle - prior to going to a neuro.
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