>:(To all the people here that insulted my wife…when she was only trying to help!, excluding Guiseppi (who was the only one that showed any consideration and  respect) I really feel sorry for you…I guess you have to mask your frustration with sarcasm and put people down to make yourselves feel better about yourself.

I’m Andy’s husband and after I read the garbage that you through at her…I had to respond without her knowledge. I have been with Andy since 1990 and YES she had the beast! When I first met her she had told me about these killer headaches and how they last about a month or so with multiple attacks daily!

At first I thought it was just a headache…but when I witnessed the extreme agony she was going through!… I felt helpless and could only hold her and rub her temples…she would scream and cry and bang her head against the wall virtually on the brink of suicide!

We went to doctors to specialist’s etc…just as she said and NOTHING WORKED!…not even slightly subsiding the pain! I watched the beast come and go year after year like clock work for 8 years! Then when the 9th year came around I swore that I was going to find some kind of help on the internet and I discovered this site.

I read all your stories and the pain you were going through and it was a huge help to see the support from other beast sufferers and knowing she was not alone. I spent days reading  post’s hoping someone could help. Yes I read a lot of quack remedies and when I read about the guy with the Pepsi…I thought the same thing as you all did!(yea right like that’s going to work) probably some guy that works for the company pushing the product!

Later that night Andy got an attack!… I said for the heck of it let’s at least try the soda thing…so she chugged down a can (while going through the cramping stage before full manifest) and as she said within minutes the pain went away! At first we thought maybe the cycle had ended  and it had nothing to do with soda.

Of course relieved …but not convinced we went to bed and Andy had a restful sleep. When we woke up that morning we started talking about the soda trick and wondering if there was anything to it. Well a few hours later she starting getting an attack…so once again downed the soda and same results gone in minutes!

During the course of that cycle she went through at least 60 more attacks! And I swear to GOD the soda worked! Maybe it has something to do with the carbonization!… who knows… who cares!…but I’m here to tell you people it worked!…I saw it with my own eyes !…you can believe us or not! That’s your choice! Do you honestly think we have nothing better to do with our lives but make up false remedies just for our entertainment! (Give me a break! People)

It may not work for everyone!…I understand that…but then again it just may work for you too! And what do you have to loose by trying the next time you get an attack! It may work with other soda’s… but we never took that chance.(it must be drank as fast as you can during the attack)

I also want to point out…that after that cycle was done (which was almost pain free because of the soda remedy) she battled it for two more years of cycles and once again the soda worked every single time! So for three full years of attacks at 4-8 a day for 30 plus days( that’s approx 700 attacks) it worked like a charm!…I would say that’s pretty conclusive!

She came here in hopes of trying to help some people… out of the goodness of her heart! And you all stomped on it! She knows the pain you all bare first hand and wanted to share her story even it could help just one person here! I truly feel for you ! But you owe this woman an apology for your rudeness! Now you’ll probably come back with more sarcasm and derogatory  statements! But no need!… we won’t be coming back! You hurt her enough and I hope your happy with yourselves! maybe some of you deserve the beast with your attitudes! Good luck with your lives!  
Steven

I had to remove what I said here.  It was too cruel and flat out WRONG!

I am sorry, Andy.

Chuck

steven, if andy's post was sincere, then i sincerely apologize.  however when your very first post is proclaiming a "cure" it tends to piss alot of us off. perhaps she could have eased into it with an introduction of who she is and gave us a story. then maybe she could have maybe asked if anybody had any luck with drinking a pepsi instead of proclaiming a "cure".

Andy H wrote on Nov 14^th, 2008 at 6:29pm:

it has now been 8 years since my last cluster attack & there’s always Pepsi in my fridge

eight years to post.  



37 exclamation points.  I'm guessing it's not caffeine-free.

Geeze......take a deep breath.  If Andy had taken any time to read the board before writing her 1st post, she would have discovered there is no magic cure for this condition.  She would have also learned that "cure" is not a word that is taken seriously here.  In fact, it really rubs most the wrong way, as you have found out.  ::)

To Andy H. and your wife I am so sorry that the "board police" slammed you after she posted I feel ashamed and should of written this last night. I dont understand some of the people on this board who think they are all mighty and get on new or older members about posting about things that helped them now or have helped them for years. So you used the "CURE" word big deal I would of just explained that using that word is a death sentence for anyone ever posting it. And of course you have the spelling/punctuation police too if you dont use the right what-ever. I was going to post what has been helping me cope for almost 4 years with these chronic clusters I have BUT I was told not to because I use "NARCOTICS". Another word that brings a death sentence. So in closing please know that not all members here are that way. Terry (probably said too much but oh well)
P.S. <not> spell checked cause dont care

   I am sorry. Things escalated rather quickly.

wrote on Nov 15^th, 2008 at 11:58pm:

Geeze......take a deep breath.  If Andy had taken any time to read the board before writing her 1st post, she would have discovered there is no magic cure for this condition.  She would have also learned that "cure" is not a word that is taken seriously here.  In fact, it really rubs most the wrong way, as you have found out.  ::)

Now Beth, are you really telling the guy to take it easy and in the same breath saying that you get worked up over the use of the word "cure?"  It seems to me that "most" are now trying to make ammends...

Andy H wrote on Nov 15^th, 2008 at 10:10pm:

I watched the beast come and go year after year like clock work for 8 years! Then when the 9th year came around I swore that I was going to find some kind of help on the internet and I discovered this site.

Andy H wrote on Nov 14^th, 2008 at 6:29pm:

low & behold I found my cure On this site 8 years ago & decided to visit back here to tell my story in hopes of helping others.

So, which is it.......was your wife here 8 years ago or did you just find this site for her?

What a load of horse shit!

Johnny, I think you're looking at a coincidence in numbers.

Andy said they found this place 8 years ago.  This doesn't contradict what Steven has said.  In fact, he says they discovered CH.com in her 9th year of suffering clusters.  

Andy said her clusters started in the 1980s.  8 years since she and hubby were last here, undetermined amount of time from reading suggestion of using Pepsi (caffeine) until using it, and according to Steven found CH.com in 9th year of Andy suffering clusters: 17 years at least plus unknown amount of time.  And dating that long back, things can get fuzzy.

I don't see a contradiction and I don't see a lie.  I see you misreading.  As Steven pointed out, I see no benefit to people coming here to stir things up with the simple recommendation to use Pepsi.

Why Andy waited 8 years to share, I don't know.  But given her reception, I'm sure we'll never know.

Andy, I'm sorry you got treated this way.  Steven, you're a wonderful supporter for defending her.  I'm glad Andy's pain free, whatever the reason.

Laurie

I was attacked for the same crap when I started posting again, same folks.   I posted that meditation was the cure.  Then I got another cycle, and then another just this year, turns out I just have a very long timespan between cycles.    Anyway, I backed off with my 'cure'.  If you get cluster headaches, you need this community knowledge.  Period.  So you have to just look past that stuff and keep reading and posting when you have questions.   My two cents.  

No, you don't have to just get over it.
Some members of this forum might as well get over their habits.

My 0.02€

This is a clear example of one who is episodic and just lives with the condition until it goes away. Then when it’s gone they give up on treatments till their friend returns.

It is unfortunate but some with short cycles can’t even get an appointment with a HA neurologist and their cycle is over before they can see one. Most of the good ones are 2-3 months out.

So in their brief time here retention is every thing in educating them on the CH so they don’t return here years later like this. Not to mention the suffering it may save them along the way.

If you want to help, get her some O2 at the doctor (read the oxygen info to the left) and get her to a HA neurologist for treatment (prednisone taper is usually the first thing combined with a preventative). The Pepsi will only rot her teeth out.


Rolo.. :)

Steven, I apologize for the horrible reception your wife received here. Please know that most of us are here to help, and I am also ashamed at some of the responses you've gotten.

You are a great supporter, and I hope you both stay and learn, read and learn about CH. There is also a board here just for supporters you may want to look at.

Pepsi work, Coke works, it's the caffeine in them. Energy drinks work well, because they have 1000 mgs of taurine in them that makes the caffeine work fast. Strong coffee works too.

Anyway, I'd like to welcome you and Andy to the board, and please feel free to ask any questions. There are people here who sincerely want to help, that is part of why we are here. Please read, read and read, and let us know how we can help you.

ClusterChuck wrote on Nov 15^th, 2008 at 10:34pm:

I had to remove what I said here.  It was too cruel and flat out WRONG! I am sorry, Andy. Chuck

Chuck,

You and I have never met, or corresponded, but I have to comment here:

It's obvious that there's a good reason that you're so loved and respected on these boards - you're a big man.

My hat is off to you!

Regards,
Jim

Wonderful....unbelievable

I hope Steven will post again. This is pretty sad.

One thing to consider is that I and lot of people use the word "cure" rather liberally and it's usually just being a little sloppy with the volcabulary. I've used it to describe treatment over the years.  :(

It's ridiculous and something that got out of control.......not that it should be a problem in any case. Stuff like Pepsi can't hurt, probably doesn't help but why make a federal case out of it and alienate people dealing with this horror?

Dumbth  :(

Charlie

I too am new here. On my first post this same group of people also made me feel unwelcome. They have done it to many and I'm sure you wont be the last. I hope you stay. Stick around and read all you can. There is a lot of good stuff in here, and as you can see a lot of good people...

Shark Boy

wrote on Nov 16^th, 2008 at 5:51pm:

It is unfortunate but some with short cycles can’t even get an appointment with a HA neurologist and their cycle is over before they can see one. Most of the good ones are 2-3 months out.

Isn't that the truth.  Everytime I go to the neuro it's well after the cycle since i'm eposidic.  It's almost uselsess.  I can talk all I want and he tells me the same shit over and over.  Last time he rolled his eyes about the shrooms, but I kind of expected that.  He is too quick to prescribe Top and Vera which I refuse to take.  He gave me the script for O2, but insurance denied it.  Now, i'm left with ice, energy drinks, The Spaniards technique, exercise, 4-way nasal spray for shadows, imitrex tabs and injectsion, Kuzdu, Melatonin, and the shrooms are coming.  I feel my knowledge and arsenal is stocked.

Sorry to get off track here from the original point.

I never read the original thread, but regardless if I believe somebody or not about what works for them, it's their choice and if it works, keep at it whatever it is.  

The goal here is to be PF.  I wish this for all  :)

Chad

Quote:

Isn't that the truth.

Me too, this cycle I had to beg to get into the GP in a timely manner.  Then I had to beg for the 02 script, before i could get into see the neuro.  The GP just did not want to give me the oxygen, he kept saying something about oxygen poisoning, I read about it later he was way off base.  When I did get into the neuro, what a relief.   Next time I can just call and get the script from him right away.    

Chad wrote on Nov 17^th, 2008 at 1:48pm:

Isn't that the truth.   He gave me the script for O2, but insurance denied it.  Now, i'm left with ice, energy drinks, The Spaniards technique

Did you fight your insurance company to get it?

Or did you just figure "They said no"?

I also support the use of high flow oxygen, it works for so many of us that it's hard to ignore.  If medical oxygen is too expensive, please consider welder's oxygen.

Regarding the whole mess when posting before....

Sometimes you have to get past some "stuff" to get educated and helped.  I hope you get the help you seek.

Ray

I just feel that I have to speak up here.  Andy DID NOT come here looking for help.  She came boasting of a cure.   She took some teasing about it.  Some of it was a little over the top and for that I really am sorry.  I too was insensitive and kidded her a little.  That doesn't make me a monster.  It makes me a person who made a mistake.

I feel that this particular incident has been blown out of proportion.  People have apologized.  Whether or not you like the way one goes about it, in my heart, I believe that EVERYONE here has helped at least one other person, on this site, at one time or another.

Jeannie

Jeannie, I don't think anyone here believes another to be a monster.
As someone else above allready stated, Andy's wording of a cure was a bad choice, but without any malignance whatsoever.
''Cure'' is indeed the wrong word, but no one should hold it against her. I'm not sure if I use the correct English word here, but she just meant a remedy (?).

No one here is a monster. But no one is a saint either, including me. I've wisecracked about people when I shouldn't have in this lifetime more often than I can count.
I wasn't around when this here happened, but the Gods only know if I would've been guilty of jumping right in and being an not a very nice person with dumb jokes. But it made me, and others here, aware of our own rude behaviour from time to time and that is a positive.

Now let the healing begin! (LOL).

Pascal.

Let's face it folks, this is a message board and I know 2 things about message boards:

1.  It sucks when people are run off the board who honestly didn't mean to do anything wrong.

2.  It sucks when a place has a ton of trolls and the MB becomes ridiculously crowded with idiots and trolls.

So, how do you keep both from happening??  On most Mbs it is almost impossible to do so.  Either some people will get run off because they feel attacked OR you end up with a constant stream of trolls and spammers.  My best advise is to attack the trolls quickly and apologize if you get it wrong.  

The things I took from this were simple:

1.  Newbies don't understand the power of the word cure on a medical board.  Trolls do.

2.  We have a great place here, BUT we all suffer (supporters suffer too) from a horrible affliction and need to remind ourselves and each other that we are imperfect at times.  

3.  As much as we attack those who identify and attack trolls when they MIGHT get it wrong, we need to be thankful they exist.

Now, Andy and Steven....... you have been welcomed and apologized to and hopefully reading this you have realized why it happened.  If you truly have CH, this is the best place for you to be.  Get over the initial problems and let us help you as you wished to help others.

OK.  Time to move on.

wrote on Nov 19^th, 2008 at 9:55pm:

Chad wrote on Nov 17th, 2008 at 1:48pm: Isn't that the truth.   He gave me the script for O2, but insurance denied it.  Now, i'm left with ice, energy drinks, The Spaniards technique I have had to fight like the dickens to get O2 at times.  It's worth the fight.  I spent lots of time on the phone to Dr., O2 suppliers, insurance companies.  You know they will dispense narcotics like candy but try to get medical oxygen and you're asking for the world :-/ Keep at it!

What others have said, don't take it personally.

Even if some of these things just work for one in a hundred, hell, have 100 of us post them and maybe we could get somewhere. What works for one, doesn't for another,  as long as people can post what works for them, we're going to get somewhere. I don't think some people really are warm to that concept.

I am having a similar experience. After many years with no help, I had a good experience with Applied Kinesiology. Fringe medicine for sure, but I wanted to throw it out, see if anyone had similar, or diferent experiences.

Crikers, you'd think I was the antiChrist. I was scum for even mentioning it and giving people hope. People were absolutely phobic, quoting 20 year old surveys, frothing and insulting, real pia's. Funny, I'm reading their stupid surveys, but dumb me, all I know it it worked with me, and I dared ask if it worked for anyone else.

It is sad, some of the same people I see on your threads. I guess we are all passionate in our arguments regarding CH. Some I think are so passionate, they don't stop for a second, and see how rude, insulting and mean spirited their posts actually are. I wonder how many people who should be on this site, were turned off by this cyber bullying.

For me, hot showers, oxygen and AK are working, couple of Triptans also. But seriously, damned if I won't chug a can  of Pepsi next headache, it would be a charm when one gets caught out and about without an O2 tank.

Many thanks for the new idea.

Chris

fly gas wrote on Dec 9^th, 2008 at 4:36pm:

What others have said, don't take it personally. Even if some of these things just work for one in a hundred, hell, have 100 of us post them and maybe we could get somewhere. What works for one, doesn't for another,  as long as people can post what works for them, we're going to get somewhere. I don't think some people really are warm to that concept. I am having a similar experience. After many years with no help, I had a good experience with Applied Kinesiology. Fringe medicine for sure, but I wanted to throw it out, see if anyone had similar, or diferent experiences. Crikers, you'd think I was the antiChrist. I was scum for even mentioning it and giving people hope. People were absolutely phobic, quoting 20 year old surveys, frothing and insulting, real pia's. Funny, I'm reading their stupid surveys, but dumb me, all I know it it worked with me, and I dared ask if it worked for anyone else. It is sad, some of the same people I see on your threads. I guess we are all passionate in our arguments regarding CH. Some I think are so passionate, they don't stop for a second, and see how rude, insulting and mean spirited their posts actually are. I wonder how many people who should be on this site, were turned off by this cyber bullying. For me, hot showers, oxygen and AK are working, couple of Triptans also. But seriously, damned if I won't chug a can  of Pepsi next headache, it would be a charm when one gets caught out and about without an O2 tank. Many thanks for the new idea. Chris

Just when I think maybe you aren't you go ahead and do it again. Sheesh. What's the point of a.) bringing this older thread back to the forefront, b.) poking at the issue of how you were "treated" upon arrival, and c.) claiming you were treated like the anti-christ.

You've been welcomed, explained, argued with (very appropriately), and been reached out to. Do you need a hug? Do they roll out a red carpet for you everywhere else?

seasonalboomer wrote on Dec 9^th, 2008 at 4:54pm:

You've been welcomed, explained, argued with (very appropriately), and been reached out to.

We are capable of what Scott mentions above, despite your fine contribution to all the things you mentioned.

and then make Andy's thread all about you.



fly gas wrote on Dec 9^th, 2008 at 4:36pm:

I am I had but I wanted to you'd think I was I was I'm reading All I know I dared I see I guess I think I wonder damned if I won't Chris

No hugs, I'm not like that, and I don't know you that well,
but how about if I get to post,
without people throwing daggers?

As someone suggested I should do, I've been reading old threads, now back about 4 months, some real, real interesting stuff in some.

It seems to me over this period, that there are 4 or 5 very heavy posters, who seem to stomp on people with amazing regularity. I mean NOTHING is of merit unless they say so, don't bother them with personal experience, they know it ALL, and they have no compunctions letting you know how superior they are to ordinary mortals.

As with these two Andy threads, there are veiled insults, misquotes, irritating airs of superiority, just the sort of things a new poster doesn't want or need.

No, I don't think this line of attack is a positive thing for this, or any other site. If people don't understand what they are doing, maybe they should be reminded.

It seems that half the people who were taken to task, looked back, took a deep breath, and were sorry for what they inadvertently did to her. Bravo! The other half, well, I don't know. The posts speak for themselves.

I brought this thread to the forefront, because I felt bad about Andy's experience. My parents taught me is is not nice to bully ladies, or anyone for that matter. I also thought the Pepsi idea was awesome. No I don't expect it to work for everyone, or me for that matter, but darn if I'm not going to try it.

A few have said newbie posters are lesser beings, because they get mad and stop posting. Others say newbies are bad when they stick out things and keep posting.

Some people say both, so I guess I'm sort of screwed whatever I do.

Guess I'll just stick around and post when I have something I think is worth posting.

Sorry, I'd love to chat, but I've got a whupper coming on.

Ciao,

Chris

Okay, so you think that this would be a better place if no one ever questions any person who posts any treatment, in the spirit of openness and "sharing"?

Anyone want to list the dangerous things we have seen here? Anyone want to list the trolls and snake-oil salesmen that stay long enough to stir up a bunch of sh&t and then storm off after no one takes the Acai berry sales pitch? Or magnets? Or colon cleansing?

The process goes like this. Post something that you are presenting as a treatment (or possible treatment) and people will ask questions. If you don't seem comfortable with defending your treatment be prepared to have it dismissed in favor of higher percentage options.

Here's the MAIN point. There are a LOT of successful treatments for CH that did not exist 20 years ago. There are abortive treatments that work for surprisingly large percentages of sufferers. There are preventative approaches, both conventional meds and alternatives that are working for much higher percentages of sufferers. There are still those looking for answers that aren't addressed by these options.

This site has been a great benefit to many, many people before you or I got here. It doesn't need either of us as heroes for anyone else. But, in lieu of "peer reviewed studies" any posting about treatments ought to be able to stand up to a few people poking at it a little.

Boomer,
Good post.
Poke away, anyone who can't defend their ideas should vanish, me included.

Big difference between honest discussion and telling someone they shouldn't be able to sleep at night because of what they posted, or the sort of **** that greeted Andy. The welcome board to this site says something about compassion, its a pretty good welcoming message.

Chris

Chris, how’s that O2 working for ya? Get you one of them high flow regulators that go to 25 LPM, you’ll save on the water bill for sure.

Have you tried one of those rice filled hot packs for you head, they work great… Three minuets in the microwave and your set… Rolo.

I was wondering who you were talking to in your first post in this thread.  You start with a sentence to someone not here but then go on and on and on about yourself.  Like the long moaning wallow of self-pity continuing in the Days of Our Lives from the moonlit wilderness of the Adirondacks.

Boomer, Oxygen is working about half the time, when it is going to work, it stops the progress of the headache, and maybe ten minutes HA vanishes. I just have a tube off the regulator, breath 100%, turn it on and off each deep breath. If the O2 isn't going to work, time to hit the shower. My wife was brilliant this year, did not sign a fuel contract, so we can actually afford hot water this winter. I have two rice bags, but am using a heating pad. It MAY, be helping a bit, darned if I can tell for sure. The 1/4 pill Zomig is what seems to really work, one 3hrs, 1 one hour before bedtime, 6 nights of sleep in a row thus, which is amazing in my history. I'm also trying to sit up in bed for an hour, before laying flat, sort of smooth out the transition and shift in bp. That MAY??? be helping also.

Kevin, I think you're confusing self pity with my natural dislike of self important people who continually misquote, tear down and are generally obnoxious. Easy mistake to make, and repeat, eh? Is everyone who disagrees with you wallowing in self pity? Such a brilliant argument, your didactic approach just wows me.

fly gas wrote on Dec 9^th, 2008 at 4:36pm:

I am having a similar experience. After many years with no help, I had a good experience with Applied Kinesiology. Fringe medicine for sure, but I wanted to throw it out, see if anyone had similar, or diferent experiences. Crikers, you'd think I was the antiChrist. I was scum for even mentioning it and giving people hope. People were absolutely phobic, quoting 20 year old surveys, frothing and insulting, real pia's. Funny, I'm reading their stupid surveys, but dumb me, all I know it it worked with me, and I dared ask if it worked for anyone else.

Chris, your PM to me indicated that you could not afford to go in for AK treatments this cycle because of monetary concerns. If I were you, I would spend more time consolidating funds to go visit your local holistic hooey provider and less time touting it. You obviously are not going to find any positive feedback for your magic rocks here.

Jumping from thread to thread, and continually reenergizing your search for AK users is futile! Yes Chris the word is FUTILE!!! You seem to have no interest in gaining knowledge of accepted treatments on this board, just AK sand bagging. Roland.  ::) ::) ::) ::) ::)

This thread has gone way beyond discussing and/or debunking a treatment approach. Chris believes that it’s helping him and you are not going to convince him that he is wrong. What’s the point?

The usual answer is that newbies need to be protected from scams. I think that case has already been made several times over. I don’t see anyone trying to peddle a cure for profit. Why try to beat him into submission?

I’m going back to my Boji stones soaked in Emu oil.

Respectfully,
Marc

fly gas wrote on Dec 10^th, 2008 at 8:38am:

people who continually misquote, tear down and are generally obnoxious.

As previously posted, you can point out my misquoting.  I tend you use your own spoken words rather than like you, make up dramatic exaggerations when speaking of others, such as:

your feared and mistrustful impression of persecution with "antiChrist"

the assuming, attaching, and reaching "phobia"

the answer to others who raise a different opinion "mean spirited"

and the catch-all "cyber-bullying"


these are from just one post. Your tearing down and obnoxious attitude toward other people is another whole issue.  The tearing down being addressed in your AK thread, the obnoxious is attaching of your long story to another's thread under the pretense of mutual compassion.  All you needed was a backdrop for your drama show and then it's...

Overture.  Hit the lights.  This is it.  The night of nights.  No more rehearsing and nursing a part, we know every part by heaaaaart.

Daffy and Bugs, and in your embellished manner.






Quote:

Is everyone who disagrees with you wallowing in self pity?

Of course not, they just don't jump into another's scene and move their self-importance to center stage.



Quote:

What others have said, don't take it personally. I am having a similar experience.   I had but I wanted to you'd think I was I was I'm reading All I know I dared I see I guess I think I wonder damned if I won't Chris

No matter how long you beat that horse...he is still dead.
Chill
the bb

Yes I think that this thread needs to die a natural death at this point. It has become a pissing contest only.

Jimi wrote on Dec 10^th, 2008 at 1:51pm:

Yes I think that this thread needs to die a natural death at this point. It has become a pissing contest only.

OK Jimmi, I'll lay low on it... But if AK pops into another thread, I will again oppose it and expose it for what it is. Pure hooey… :D