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

athome

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Comforting to know that others understand...
Aug 18^th, 2010 at 10:07pm

Here I am again frustrated and in the middle (hopefully end but who know) of a cycle. It had been two years - I thought it was a miracle and then it hit... It's been the worst in the sense that this is the first cycle to come with only a handful of PFD. Im once again besides myself. I hate it that as much as people try to understand they have no idea. You try to explain but there is no explaination as to how intense these things get. Those closest to me have seen me at my worst (the rocking, the banging of the head, the pulling of the hair, the yelling, etc...) but even they have no idea. I choose to go to another neuro which again was useless - I am so exhausted I have no energy to be bothered with another dr's appointment. I will continue to use my ice water to help with the pain but I am really going into desperation mode.... When will the cycle end????

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shellcory

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Victoria, Australia
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Re: Comforting to know that others understand...
Reply #1 - Aug 19^th, 2010 at 9:23am

Welcome,
The frustration you are feeling is known all to well to many sufferer's here, there is a complete lack of knowledge and understanding by not only the general community but also with many medical professionals with this condition. Please familiarize yourself with the info under the tabs on the left of the page. Information is power, there are a couple of useful documents and letters that you can print out to give to friends/colleague's and doctors to help with their understanding of what your going through.

Some links that might help a little are:

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I hope you get some relief soon, Wishing you pain free times.
Regards Shell

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« Last Edit: Aug 19^th, 2010 at 9:24am by shellcory »

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Brew CH.com Sponsor CH.com Alumnus Offline Posts: 14163	Re: Comforting to know that others understand... Reply #2 - Aug 19^th, 2010 at 11:17am It appears as though you're in a major metropolitan area. Why have you not sought a headache specialist? Not all neurologists specialize in headache treatment.
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athome

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Miami, FL
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Re: Comforting to know that others understand...
Reply #3 - Aug 19^th, 2010 at 11:00pm

Shelly - Thanks for the info.... the second link did not open -I think that was the letter?
This website was a God sent when I found it around 1999 or so.... I try to read thru all the info as much as I can.

Brew - Yes I live in Miami - to tell you the truth I did not know there are "headache specialist" thought they were all neuro's... Gonna have to look into this. Thanks!

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Lettucehead

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I am very blessed...

Posts: 293
Iowa
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Re: Comforting to know that others understand...
Reply #4 - Aug 19^th, 2010 at 11:14pm

athome wrote on Aug 18^th, 2010 at 10:07pm:

Here I am again frustrated and in the middle (hopefully end but who know) of a cycle. It had been two years - I thought it was a miracle and then it hit... It's been the worst in the sense that this is the first cycle to come with only a handful of PFD. Im once again besides myself. I hate it that as much as people try to understand they have no idea. You try to explain but there is no explaination as to how intense these things get. Those closest to me have seen me at my worst (the rocking, the banging of the head, the pulling of the hair, the yelling, etc...) but even they have no idea. I choose to go to another neuro which again was useless - I am so exhausted I have no energy to be bothered with another dr's appointment. I will continue to use my ice water to help with the pain but I am really going into desperation mode.... When will the cycle end????

Please, athome, hang in there. We know what you're feeling as most of us have been there or watched loved ones go through it. Frankly, to me, the most horrible aspect of CH is the hopelessness it fosters...
Good news is that there are things that can help - red bull, abortives, preventives.
Please see a headache specialist - but in the meantime, print out some of the info that Bob Johnson has posted about treatment of CH (the article from the AAFP is a particularly nice one) and take it to your family doc. That should hopefully get you started until you can see the headache specialist.

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Listen, and understand. That terminator is out there. It can't be bargained with. It can't be reasoned with. It doesn't feel pity, or remorse, or fear... 'The Terminator' AKA CH

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athome

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Miami, FL
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Re: Comforting to know that others understand...
Reply #5 - Aug 19^th, 2010 at 11:26pm

Thanks I will look at Bob's info...
The meds scary me - had a rapid heart thing happen with Relpax and since then have stuck with oxygen and ice water. It's crazy that I don't use abortives especially when the pain gets horrible but that incident scared me so much that I'd rather just have (dare I say this) a CH.
Gonna definetly see about the "specialist" - need a new Rx for oxygen.

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Lettucehead

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I am very blessed...

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Iowa
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Re: Comforting to know that others understand...
Reply #6 - Aug 19^th, 2010 at 11:31pm

athome wrote on Aug 19^th, 2010 at 11:26pm:

Thanks I will look at Bob's info...
The meds scary me - had a rapid heart thing happen with Relpax and since then have stuck with oxygen and ice water. It's crazy that I don't use abortives especially when the pain gets horrible but that incident scared me so much that I'd rather just have (dare I say this) a CH.
Gonna definetly see about the "specialist" - need a new Rx for oxygen.

I hear you!
I can't use tripans for other reasons (I'm pregnant Wink

), but o2 is a necessity and the red bull really does help. Even if no tripans, you can still get some relief...

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Listen, and understand. That terminator is out there. It can't be bargained with. It can't be reasoned with. It doesn't feel pity, or remorse, or fear... 'The Terminator' AKA CH

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Guiseppi CH.com Moderator CH.com Alumnus Offline San Diego to Florida 05-16-2011 Posts: 12063 SAN DIEGO, CALIFORNIA USA Gender:	Re: Comforting to know that others understand... Reply #7 - Aug 20^th, 2010 at 12:29am Another strong vote for oxygen! I do not know of a medical condition that restricts it's use, one of the many advantages of it. A 32 year sufferer here, I can abort an attack in 6-10 minutes. Beats the old 90-120 minute rides I used to take! REALLY push for the 02, it kicks butt! Joe
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sandie99

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Wish it, dream it, do
it - inspite the pain!

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Finland
Gender: female

Re: Comforting to know that others understand...
Reply #8 - Aug 27^th, 2010 at 4:59am

Athome,

Have you tried energy drinks with caffeine, taurine and guarana? If not, they're worth giving a go. They can help you, who knows. Consider that option if you haven't already tried.

I'm anti-med myself, because I get lots of side effects, so ever since 2006 energy drinks have been the treatment for me.

I do hope that you will find that treatment,which works for you.

Wishing you PF days,
Sanna

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shellcory

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Victoria, Australia
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Re: Comforting to know that others understand...
Reply #9 - Aug 28^th, 2010 at 1:40am

Sorry about the link, here is the correct link:

Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

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Its well worth looking at and even printing a few copies, Its one of the easiest ways of getting others to understand what your going through, if you can get them to read it!
Wishing you pain free times!
Regards Shell Smiley

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