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

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".

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. 

    I am sorry. Things escalated rather quickly.

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


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


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!

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.  

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..

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

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

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

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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.

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

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.

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