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treeoftears

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Sharing experiences through video
Feb 25^th, 2009 at 6:36pm

Hi,

Video of my relatively 'mild' attack earlier today.

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When I first started to suffer from Cluster Headaches, the feeling of isolation was terrible. I also felt a little embarassed, I was worried that people might think I was crazy or an attention seeker. I still hide when I have an attack; I can not stand for anyone to see me. However, when I started to read about other peoples experiences, I realised how much it helped me. I would never wish this pain on anyone, yet it helps to know that, although we suffer alone, we are not alone in our suffering.

For that reason, I would like to share a video that I made today of a relatively mild attack. I did not make it to attract sympathy. I made it simply so that anyone new to this terrible condition can, hopefully, recognise the pain and know that they are not alone.

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« Last Edit: Feb 25^th, 2009 at 6:39pm by treeoftears »

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Jonny Ex Member	Re: Sharing experiences through video Reply #1 - Feb 25^th, 2009 at 7:36pm Very artistically done, I really like the title 'Mild attack"
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cynjeep89 CH.com Alumnus Offline Posts: 1626 Delaware\| Gender:	Re: Sharing experiences through video Reply #2 - Feb 25^th, 2009 at 7:41pm Thanks for sharing, Sean. Any attack hurts whether it's mild, medium or severe. I am keeping my fingers crossed and hoping that yours will soon end.
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DennisM1045 CH.com Alumnus Offline One wave at a time! Posts: 3437 Haverhill, Massachusetts, USA Gender:	Re: Sharing experiences through video Reply #3 - Feb 25^th, 2009 at 7:46pm Thank you for reaching out like this. It is hard to see and yet all too familiar. The biggest impact I've felt from this site is the knowledge that I'm not alone. In fact I never was. Neither were you my clusterbrother. -Dennis-
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Linda_Howell

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Re: Sharing experiences through video
Reply #4 - Feb 25^th, 2009 at 8:17pm

Believe me...no one in this place thinks you're trying to attract sympathy. Very well done.

As many times as I have seen Chuck get hit in person at conventions....I still can't watch that video of him for more than a few seconds. Personally I would have bitch-slapped Luke for holding ME that tightly (as much as I like him)

ANY and ALL...recognition... as well as educating the public on this condition of ours is a good thing. Thank you for adding yet another facet to that.

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« Last Edit: Feb 25^th, 2009 at 8:19pm by Linda_Howell »

Hurt people.....hurt people. Think about it.

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barry_sword

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Re: Sharing experiences through video
Reply #5 - Feb 25^th, 2009 at 8:40pm

Hi Sean and sorry you had to search us out, but damn glad for you you did!

100% o2 with at least a 15 LPM regulator with a non-rebreather mask with no outside air whatsoever and get on it at the very first sign of an on-coming attack.

This is my #1 abortive and I take Verap as my prevent. I am month 5 into this cycle and still alive!! Cheesy

Others will be along soon.

Barry

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« Last Edit: Feb 25^th, 2009 at 9:13pm by barry_sword »

QUIT SMOKING SEPT. 03 2005
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Potter CH.com Alumnus Offline Team MOOSE DROOL Stinky Stuff on a Hook Prostaff Posts: 3600 Blgs.Mt. Gender:	Re: Sharing experiences through video Reply #6 - Feb 25^th, 2009 at 8:43pm Quote: Very artistically done, I really like the title 'Mild attack" Well said.......................and with respect I might add. Kinder gentler Potter
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Artonio

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Re: Sharing experiences through video
Reply #7 - Feb 25^th, 2009 at 9:02pm

Thanks for doing the video.

It is wonderfully made and I sympathize with you. Glad that you found your way here and that you had the courage to share such an intimate and vulnerable aspect of your life to help others.

Stick around this joint and share in the phenomenon known as CH.COM.

also... I hope you get a break soon.

with warm regards,
Tony

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Jimi

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Re: Sharing experiences through video
Reply #8 - Feb 25^th, 2009 at 10:31pm

We know the feeling of wanting to be alone, to not let anyone see us get hit for fear of people thinking we are dying. It still upsets me when I see others get hit and I have seen this many times now.

Welcome to the board and thank you for sharing yourself and letting others see the pain that we endure.

PS. What are using to fight the beast?

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I am convinced that life is 10% what happens to me and 90% how I react to it.

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George

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Re: Sharing experiences through video
Reply #9 - Feb 25^th, 2009 at 10:54pm

Welcome to the board. Thank you for posting your video. It's not something I could do--I've spent most of my life hiding my attacks from other people. I respect your courage.

It's still very difficult for me to watch someone else going through a hit when I KNOW what they're dealing with.

Again, welcome. Pull up a chair and get to know the folks here.

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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Guiseppi

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Re: Sharing experiences through video
Reply #10 - Feb 26^th, 2009 at 1:11am

I've been dancing with the beast for about 30 years, and I STILL can't watch any of those videos without getting sick to my stomach. I swear I start to get sympathy attacks. Undecided

The good news is you are not alone, and will never have to be alone again. You don't have to explain to anyone on this board what a CH is and how much the damned things hurt. We've all been there and know.

Let us know what you're using, what has and hasn't worked for you. The biggest strength of this board is the combined experience of 10,000 CH sufferers. Maybe we can point you in a direction to find more relief. Hang in there.

Joe

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"Somebody had to say it" is usually a piss poor excuse to be mean.

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Batch CH.com Alumnus Offline Control The Beast With O2 & D3 You Must Posts: 3708 Bremerton, WA Gender:	Re: Sharing experiences through video Reply #11 - Feb 26^th, 2009 at 1:20am Sean, Nicely done... Now start using some oxygen therapy and avoid most of the pain. Shoot me a PM or email if you need any assistance in making this happen. Take care, V/R, Batch
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ClusterChuck

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Re: Sharing experiences through video
Reply #12 - Feb 26^th, 2009 at 3:40am

Welcome to the ~~insane asylum~~ family! I am glad you have found us, and joined.

You have been given excellent advise, especially about using oxygen as an abortive. Many of us consider it to be our life saver. I know I sure do!

Thank you for filming and posting your hit. The more we can get the vision out there, the better it is.

I DO have a concern about your video, though. It is VERY well done, and rather unique in the way you put it out there. I am just concerned that it does not have the impact, that it could have, if it was in the normal color version, without the fancy treatment. I don't think it has the full impact, nor does the pain show through. It is too "pretty" or artsy, in my mind.

I feel the plain raw footage impacts a viewer more. All of US know what the pain is like, but those that don't intimately know about them, might miss the total devastation with your clip. At times, it looks too professional, and almost as if an actor is playing the part.

Can you do another film, but in normal viewing? Leave the one that you already have done up there, (it is too well done, to remove it) but do another one, and see if it gets more of a kick to the senses.

Those are just my opinions. Others may feel differently.

Again, welcome, and thank you!

Chuck

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CAUTION: Do NOT smoke when using or around oxygen. Oxygen can permeate your clothing or bedding. Wait, before lighting cigarette or flame.

Keep fire extinguisher available, and charged.

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midwestbeth CH.com Sponsor Offline Posts: 1123 Edwardsville, IL Gender:	Re: Sharing experiences through video Reply #13 - Feb 26^th, 2009 at 9:39am I can't watch video's of someone getting hit without getting emotional......and I was almost in tears by the end of your video. Welcome and thanks for sharing that. Beth
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Melissa CH.com Moderator CH.com Alumnus Offline Don't give up! Posts: 7238 Central WI, USA Gender:	Re: Sharing experiences through video Reply #14 - Feb 26^th, 2009 at 9:47am I feel your pain brother...literally. I'm so sorry for what you're going through, but glad you have found this site to get the information to fight it. There are many of us who are here for you!! hugs, melissa
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Potter

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Re: Sharing experiences through video
Reply #15 - Feb 26^th, 2009 at 11:10am

ClusterChuck wrote on Feb 26^th, 2009 at 3:40am:

Welcome to the ~~insane asylum~~ family! I am glad you have found us, and joined.

You have been given excellent advise, especially about using oxygen as an abortive. Many of us consider it to be our life saver. I know I sure do!

Thank you for filming and posting your hit. The more we can get the vision out there, the better it is.

I DO have a concern about your video, though. It is VERY well done, and rather unique in the way you put it out there. I am just concerned that it does not have the impact, that it could have, if it was in the normal color version, without the fancy treatment. I don't think it has the full impact, nor does the pain show through. It is too "pretty" or artsy, in my mind.

I feel the plain raw footage impacts a viewer more. All of US know what the pain is like, but those that don't intimately know about them, might miss the total devastation with your clip. At times, it looks too professional, and almost as if an actor is playing the part.

Can you do another film, but in normal viewing? Leave the one that you already have done up there, (it is too well done, to remove it) but do another one, and see if it gets more of a kick to the senses.

Those are just my opinions. Others may feel differently.

Again, welcome, and thank you!

Chuck

Yep. It does look scripted don't it?

Kinder gentler Potter

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cynjeep89 CH.com Alumnus Offline Posts: 1626 Delaware\| Gender:	Re: Sharing experiences through video Reply #16 - Feb 26^th, 2009 at 2:28pm Scripted? IMHO, no. Well done? Yes. Glad you shared it with us? Hell yes! Hope you never have another CH? With all of my heart, yes.
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barry_sword CH.com Alumnus Offline Mountain Biking Keeps Me Sane Posts: 3947 Bracebridge, Canada Gender:	Re: Sharing experiences through video Reply #17 - Feb 26^th, 2009 at 6:34pm Where did he go?
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Potter CH.com Alumnus Offline Team MOOSE DROOL Stinky Stuff on a Hook Prostaff Posts: 3600 Blgs.Mt. Gender:	Re: Sharing experiences through video Reply #18 - Feb 26^th, 2009 at 6:44pm barry_sword wrote on Feb 26^th, 2009 at 6:34pm: Where did he go? one and done? Maybe he's off making a video of something else. Kinder gentler Potter
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Brew CH.com Sponsor CH.com Alumnus Offline Posts: 14163	Re: Sharing experiences through video Reply #19 - Feb 26^th, 2009 at 7:52pm It's been just over 24 fukkin' hours. Other people drop off the face of the earth for weeks or months with nary a peep. Let's not jump to conclusions.
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treeoftears

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Re: Sharing experiences through video
Reply #20 - Mar 10^th, 2009 at 2:06pm

Well, firstly a huge thanks to everyone that took the time to watch the video and leave a comment.
Secondly, I apologise for not replying to anyone since I posted the link. The truth is that I forgot my password and also to be honest when I go through a cycle I very much withdraw into myself and do not much bother with the internet.

I would like to address some of the comments regarding the 'scripted' and 'artsy' feel to my video. The reason I made the video monochrome an added music and cut a few of the scenes was, to me at least, an obvious choice:

I feel almost completely powerless during a cycle and the attacks are so ugly, so disgusting that I wanted to make a video that captured those feelings. There are plenty of videos out there of straight forward no bullshit cluster attacks. It was just my way of trying to make something that is ugly, just a little bit easier to watch and deal with. I also made another video from some of the same footage that is more graphic and without music.

I also made the video in monotone because I wanted to allow myself just a bit of anonymity.

I edited the video after the attack (obviously). Really, all I was doing was trying to take control of one part of my life that controls me. I found it a great help to know that other people suffer from the same affliction and so this was just my little shot at 'empathy'.

All that aside, I am now two whole days without an attack so looks like I am probably gonna be in remission soon for the next eighteen months (if my past history is anything to go by).

Thanks again to everyone who offered some very helpful advice. I take Verapamil every night during a cycle and use Imigran nasal sprays for most attacks.

Oxygen seems to be the way to go from all accounts here. My Dr has been loathe to help me with that though so I will be sure to be better armed next time with all your advice.

Sean

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Potter

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Re: Sharing experiences through video
Reply #21 - Mar 10^th, 2009 at 2:30pm

treeoftears wrote on Mar 10^th, 2009 at 2:06pm:

Well, firstly a huge thanks to everyone that took the time to watch the video and leave a comment.
Secondly, I apologise for not replying to anyone since I posted the link. The truth is that I forgot my password and also to be honest when I go through a cycle I very much withdraw into myself and do not much bother with the internet.

I would like to address some of the comments regarding the 'scripted' and 'artsy' feel to my video. The reason I made the video monochrome an added music and cut a few of the scenes was, to me at least, an obvious choice:

I feel almost completely powerless during a cycle and the attacks are so ugly, so disgusting that I wanted to make a video that captured those feelings. There are plenty of videos out there of straight forward no bullshit cluster attacks. It was just my way of trying to make something that is ugly, just a little bit easier to watch and deal with. I also made another video from some of the same footage that is more graphic and without music.

I also made the video in monotone because I wanted to allow myself just a bit of anonymity.

I edited the video after the attack (obviously). Really, all I was doing was trying to take control of one part of my life that controls me. I found it a great help to know that other people suffer from the same affliction and so this was just my little shot at 'empathy'.

All that aside, I am now two whole days without an attack so looks like I am probably gonna be in remission soon for the next eighteen months (if my past history is anything to go by).

Thanks again to everyone who offered some very helpful advice. I take Verapamil every night during a cycle and use Imigran nasal sprays for most attacks.

Oxygen seems to be the way to go from all accounts here. My Dr has been loathe to help me with that though so I will be sure to be better armed next time with all your advice.

Sean

Good on ya for the pain free time. Get the oxygen, it's a life saver.

As far as the video goes ch is ugly, ou are right about that, but a pig is still a pig no matter how much makeup ya use.

Kinder gentler Potter

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treeoftears CH.com Newbie Offline I Love CH.com! Posts: 4	Re: Sharing experiences through video Reply #22 - Mar 10^th, 2009 at 2:58pm Cheers Buddy, I guess a pig in make-up is a little easier to take to bed
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Potter CH.com Alumnus Offline Team MOOSE DROOL Stinky Stuff on a Hook Prostaff Posts: 3600 Blgs.Mt. Gender:	Re: Sharing experiences through video Reply #23 - Mar 10^th, 2009 at 3:35pm treeoftears wrote on Mar 10^th, 2009 at 2:58pm: Cheers Buddy, I guess a pig in make-up is a little easier to take to bed Depends on yer tastes I guess. What's yer preference? Kinder gentler Potter
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treeoftears CH.com Newbie Offline I Love CH.com! Posts: 4	Re: Sharing experiences through video Reply #24 - Mar 10^th, 2009 at 3:47pm A pig in a wig that dances a jig.
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