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        New Message Board Archives >> 2007 General Board Posts >> A New Cluster Attack Movie
        
(Message started by: artonio7 on Apr 30^th, 2007, 3:59am)

Title: A New Cluster Attack Movie
Post by artonio7 on Apr 30^th, 2007, 3:59am

I've never allowed anyone but Ben to witness one of my Cluster Headaches up to this point. This is unnerving for me but I hope it will help someone.

http://www.youtube.com/watch?v=LAf_QFmTPkw

with warm regards,
Tony

Title: Re: A New Cluster Attack Movie
Post by sandie99 on Apr 30^th, 2007, 4:23am

Tony,

I just watched it. Thank you for your courage.... [smiley=hug.gif]

Sanna

Title: Re: A New Cluster Attack Movie
Post by barry_sword on Apr 30^th, 2007, 6:40am

Tony, that was a very brave thing you did.

Barry

Title: Re: A New Cluster Attack Movie
Post by LeLimey on Apr 30^th, 2007, 7:16am

Watching it was bad enough, I could feel it too. It breaks my heart seeing someone get hit and its so much worse when its someone I know. :'(

Thank you Tony [smiley=hug.gif]

Title: Re: A New Cluster Attack Movie
Post by zanychef on Apr 30^th, 2007, 7:21am

thanks tony brave thing to do showing your pain
Ian

Title: Re: A New Cluster Attack Movie
Post by BB on Apr 30^th, 2007, 7:33am

Thank you very much for your courage to share something so intimate with us.

Its amazing that although I have witnessed nearly 1000 of these attacks with Daniel but watching your video clip made me cry just the same.

I sure hope that by bringing our pain openly to the world, we clusterheads and supporters will come a step closer to beating this condition by forging the awareness.

Medical people especially doctors should all watch video clips like this before turning around saying no to oxygen or triptans or whatever it is that their patient needs to keep the pain at bay.

Thank you again Tony. Prayers and lots of love and hugs coming your way from all of us.

Annette, Daniel, Edwyn , Andy and Happy

Title: Re: A New Cluster Attack Movie
Post by Gator on Apr 30^th, 2007, 8:04am

~~[smiley=huh.gif] It says video removed by user.~~

Working now. Thanks for putting yourself out there, Tony.

Damn, I hate my dialup. I wish I had a decent connection to view videos online. The only way I can really watch one without total frustration is to download the whole thing to my computer and then watch it. These streaming sites don't allow that. :(

Title: Re: A New Cluster Attack Movie
Post by Jackie on Apr 30^th, 2007, 8:07am

I've seen these attacks many, many times....sure doesn't make it any easier. Bless your heart. :'(

Now.....please, Please, PLEASE...what do we need to do to get you hooked up with some 02?

Love to you,
Jackie

Title: Re: A New Cluster Attack Movie
Post by Jimi on Apr 30^th, 2007, 9:08am

Thanks Tony for sharing that. It never gets easier watching someone else get hit like that.

Title: Re: A New Cluster Attack Movie
Post by Langa on Apr 30^th, 2007, 9:09am

Thanks Tony...so sad to watch, but I hope it does help someone. So now I know what I looked like 3 days ago. My head is still sore from that hit.

Jackie mentioned the 02. Ever tried it? I'm about to get a tank myself real soon. :-/

Langa

Title: Re: A New Cluster Attack Movie
Post by aprilbee on Apr 30^th, 2007, 9:17am

Heartbreaking :'(

Thank you for sharing....I wouldn't want anyone seeing me like that...again, thanks.... :-*

Title: Re: A New Cluster Attack Movie
Post by LadyElaine1 on Apr 30^th, 2007, 9:21am

I could really feel your pain watching that. I wish I could snap my fingers and make the pain end for all of us.
Please look into the o2. The o2 calms my attacks, and they don't last so long. Its a must to have.
If I can help in any way. Just give let me know.

Thanks for doing this for us, that lets the world know what we have, the pain they can see better. Its hard for doctors, and the world to know if they don't see it.

Title: Re: A New Cluster Attack Movie
Post by George_J on Apr 30^th, 2007, 9:33am

Tony, I think this was a very courageous thing to do. Thank you.

Best wishes,

George

Title: Re: A New Cluster Attack Movie
Post by Margi on Apr 30^th, 2007, 10:14am

Oh God....the knee bouncing. How I hate to see the knee bouncing. It's a signal to me that this is pain I can't do anything to stop. This is major league pain over which I am powerless.

Tony, please.....get yourself some oxygen. It helped my Mike to be able to stop the knee bouncing.

BB's right - I think EVERY GP should be made to see this (and Chuck's) video. Thank you for doing this Tony - I'm so sorry you have a reason to be able to star in such a movie.

Title: Re: A New Cluster Attack Movie
Post by ClusterChuck on Apr 30^th, 2007, 10:35am

on 04/30/07 at 08:07:01, Jackie wrote:

Now.....please, Please, PLEASE...what do we need to do to get you hooked up with some 02?

on 04/30/07 at 09:09:44, Langa wrote:

Jackie mentioned the 02. Ever tried it? I'm about to get a tank myself real soon.

on 04/30/07 at 09:21:49, LadyElaine1 wrote:

Please look into the o2. The o2 calms my attacks, and they don't last so long. Its a must to have.

on 04/30/07 at 10:14:50, Margi wrote:

Tony, please.....get yourself some oxygen. It helped my Mike to be able to stop the knee bouncing.

See Tony? I am not the ONLY nag about oxygen!

For everyone else: Tony has received a regulator for an "E" tank. A regulator for an "M" tank should be arriving today, or so. A clustermasx^TM should be arriving any day, too.

NOW he just has to get the oxygen!

Chuck, the O₂ nag ....

Title: Re: A New Cluster Attack Movie
Post by Rosybabe on Apr 30^th, 2007, 12:15pm

Tony, I was watching the video and silently crying for you and I did not realize my little girl was behind me, she came because she heard you crying and she said:
"Look mami, he is having one of those, he needs someone to hug him, can we hug him mama?"
It is so sad that she had to witness this with me and now she realizes there are others like me out there and all she wants to do if give hugs to make us feel better...
I wish a hug was all we needed...

Title: Re: A New Cluster Attack Movie
Post by Maffumatt on Apr 30^th, 2007, 12:30pm

I hate this shit in so many ways. Take care man.

Title: Re: A New Cluster Attack Movie
Post by JeffB on Apr 30^th, 2007, 1:05pm

I'm so glad I'm fucking pain free right now.

Way to go, Tony!

Title: Re: A New Cluster Attack Movie
Post by The mad viking on Apr 30^th, 2007, 1:30pm

on 04/30/07 at 10:35:53, ClusterChuck wrote:

You better do what Chuck is ORDERING you to do Tony,or i am going to be really NASTY when you come here in september

Svenn

Title: Re: A New Cluster Attack Movie
Post by artonio7 on Apr 30^th, 2007, 2:09pm

Thank you all for your kindness... every warm wish is being sent back to you in double doses. I'm so very sorry if my hit was disturbing to watch

Alright already with the o2... sheesh. You are all such wonderful NAGS and I love you to pieces for it. I guess it doesn't take a doctor's degree to prescribe the right treatment. Now... with the exception of BB... if we can only get the rest of the medical world in line. I'm still having issues with my GP and Neurologist in regards to the Prescription for o2. I hope to have it resolved soon. Perhaps there will come a day when prescribing o2 for CH is as common as prescribing water for thirst.

We still have a long way to go in the battle.

For those of you with dial-up I made a tiny version that can be downloaded. It's only about 6 MB as opposed to the 23 MB file on you tube.
http://artonio7.com/clusterheadache-40Kbps.mov

Thank you again and please feel free to share the link to the video with anyone who needs a little enlightenment.

with warm regards,
Tony

Title: Re: A New Cluster Attack Movie
Post by midwestbeth on Apr 30^th, 2007, 2:13pm

Tony,

Thanks for posting that. The rocking, holding a towel to your head and crying is so very familiar to me.

Now time for me to nag a little bit more. GET SOME 02!!!
OK?

The next video you post better be of you huffing 02 and aborting the ch before it gets unbearable ;).

Beth

Title: Re: A New Cluster Attack Movie
Post by Yorky on Apr 30^th, 2007, 3:28pm

hey tony..you had no props in ya video ?

o2 ;)......have you tried ice to the head ?

well done bro.

Title: Re: A New Cluster Attack Movie
Post by Turts on Apr 30^th, 2007, 3:48pm

:'(

reality that i am not the only one has hit home.

pictures 1000:1 over words

thanks for sharing with us at CH.com and more importantly the world.

thanks Tony

Turts

Title: Re: A New Cluster Attack Movie
Post by Guiseppi on Apr 30^th, 2007, 3:49pm

I still haven't watched one of these to the finish. At the 3 minute mark, when you do the classic "both arms around the head wrap" I shut it off. It's just too damned real. Be nice if more people from the medical field watched these. Thanks.

And by the way.....OXYGEN! love ya man.

Guiseppi

Title: Re: A New Cluster Attack Movie
Post by Mosaicwench on Apr 30^th, 2007, 4:31pm

on 04/30/07 at 10:14:50, Margi wrote:

Oh God....the knee bouncing. How I hate to see the knee bouncing. It's a signal to me that this is pain I can't do anything to stop. This is major league pain over which I am powerless.

Margi - from one supporter to another I know exactly what you mean about that knee bouncing . . . .

I applaud you Tony, and Chuck, for letting us witness your pain. It's hard enough watching someone I know and adore be attacked but harder than I ever imagined to watch someone I don't know well.

There HAS to be a special place in heaven for all of you sufferers. There certainly can't be a hell worth speaking of because you're living in it daily.

:'(

Title: Re: A New Cluster Attack Movie
Post by ClusterChuck on Apr 30^th, 2007, 4:48pm

on 04/30/07 at 16:31:22, Mosaicwench wrote:

There certainly can't be a hell worth speaking of because you're living in it daily.

WHAT?? ?? ?? ??

Ya mean I am married again?? ?? ?? ??

DAYUM!!!

Chuck

Title: Re: A New Cluster Attack Movie
Post by Sandy_C on Apr 30^th, 2007, 4:48pm

Thank you Tony. We all appreciate how hard that was for you to do.

I wish we could find some way to make this video, and Chuck's mandatory viewing for all med students.

I wish I could make your pain go away.

Sandy

PS - Get the dog gonned 02! ;;D

Title: Re: A New Cluster Attack Movie
Post by Grandma_Sweet_Boy on Apr 30^th, 2007, 5:13pm

Like the others have said (and I'm sure by now, you're sick to death of hearing it) O2, my friend, 02.

Man that video surely does bring painful memories. The knee bounce is just way too familiar.

Wishing you some PF time.

Carol

Title: Re: A New Cluster Attack Movie
Post by E-Double on Apr 30^th, 2007, 7:01pm

Now that I've looked in the mirror, the only thing I can say is Get your ass some O2...........sound familiar

Good lookin' out for all.

E

Title: Re: A New Cluster Attack Movie
Post by Mosaicwench on Apr 30^th, 2007, 7:17pm

on 04/30/07 at 16:48:40, ClusterChuck wrote:

WHAT?? ?? ?? ??

Ya mean I am married again?? ?? ?? ??

DAYUM!!!

Chuck

[smiley=argue.gif]

Chuckie Chuckie Chuckie . . .I'm sorry you had a bad experience being married. Not all marriages are hell.

Title: Re: A New Cluster Attack Movie
Post by stevegeebe on Apr 30^th, 2007, 10:15pm

God sakes..what a reminder!

What I found interesting in your film is that what was observed, while gut wrenching, can't truely express the level of the actual degree of pain.

I don't mean any disrespect Tony. It was as if I saw myself. The pain that we experience can't be matched by either sound or the human bodies ability to contort itself to reflect the actual intensity of this indescribable level of pain.

The begging for relief dampens the observable agony.

Thanks for your effort.

Steve G

Title: Re: A New Cluster Attack Movie
Post by boonie on Apr 30^th, 2007, 10:55pm

Thanks for the video,

It is just the way it is, except mine always last 2 hours or so and the video is 9 minutes but it sure drives the point home

Great video
boonie

Title: Re: A New Cluster Attack Movie
Post by sldrswyfe on May 1^st, 2007, 4:26am

Hey Tony..

Thankyou for sharing that.., it is difficult to watch as it makes it all too real.

I also found it interesting/ironic to see we all progress and do many of the same things...arms wrapped around our heads, rocking, knee bouncing...then the "crying stage"...I also beg and plead at that stage...at that stage, you feel terrified, frustrated and DO NOT want to continue that "ride" and know you have no choice...I know I am losing my bearings when Im crying...adding to the terror. I noticed you began to try and get your bearings at that point too...and when you put your arm over your head and were pushing your neck...

It amazed me to see you progress to the different levels, react to them .... all the same as I. I see your a "lefty" too.

I am so very sorry for you. From the bottom of my heart, "Thank You" for helping me to not feel alone in my battle. To realize I am not weak, but very, very strong...and that I am more than "one big headache"...as one tactful physician put it. (extreme sarcasm)

Being that Im clueless on the computer, I don't know how to forward that link...to my Dr and other family and friends...the one's that have always told me"I just GET MYSELF hysterical", to just "Forget about 'MY HEADACHES', etc. etc. :-/ [smiley=huh.gif] >:(

Thank you Tony. Thoughtfully, Sherri :)

Title: Re: A New Cluster Attack Movie
Post by nani on May 1^st, 2007, 10:17am

[smiley=hug.gif]

Thanks for your courage, Tony. It was almost like I forgot, until I saw this.
oxygen. Red Bull.
hugs and love, nani

Title: Re: A New Cluster Attack Movie
Post by TonyG1 on May 1^st, 2007, 7:44pm

Ditto on what everyone else has said Tony. Thanks, that took some courage to put yourself out there! I am a left sided hittee <is that a word?> as well so I felt your pain ...

Title: Re: A New Cluster Attack Movie
Post by nancyc on May 3^rd, 2007, 11:09am

I dont care how long you are pf, you never forget that horror. My prayers are with you , Tony and everyone still suffering from the beast! smiles, nancyc PS I just wish every Neuro in the world had a copy of this!

Title: Re: A New Cluster Attack Movie
Post by Erika on May 3^rd, 2007, 11:40am

I don't even know you and I couldn't watch this whole thing. I didn't need to though - I have seen it first hand WAY too many times!! Tears are streaming down my face right now for several reasons - I cry for all of your pain and I cry for ours. I also cry for all of the kindness and love that I feel here and we are BRAND NEW. Even though we haven't been diagnosed by a doctor (which I am starting to think isn't necessary - I mean a doctor is, but we will tell him/her what we have and need!! or I say 'we' as if I am experiencing this myself, which no matter how hard I pray to take it from him, just to give him a break - it never happens)
Other than my husband I have never seen anything like this before, but your video shows us that this is indeed what he is suffering and I thank you for the courage to help others!!

When we are able - we will 'give back' - but for now we are just needing to take for a while! Thank you for allowing us to benefit from your pain! I wish you pain free days for all eternity - to all sufferers!!

This is the worst thing I have ever witnessed!!

Title: Re: A New Cluster Attack Movie
Post by Margi on May 3^rd, 2007, 12:05pm

hugs to you, Erika. For what it's worth, my hubby wasn't diagnosed until about 4 years after we found this website. At that point, it was only because we wanted to try the conventional med route (bad idea for us, it turned out) and we needed scripts from a neuro.

We self-diagnosed just from the homepage. Cluster IS very rare and VERY recognizable once you see it in another person. It's like finding someone from your home planet, isn't it?

oh and...I have to give you a smack on the nose with a newspaper, girl...You said that it's not like YOU are experiencing this....honey, you are. Maybe you and I don't feel that exact pain that our sufferers do but the pain we feel is equally grim. Cluster affects everyone it touches, trust me.

Title: Re: A New Cluster Attack Movie
Post by burnt-toast on May 3^rd, 2007, 6:48pm

My right eye/nostril run profusely when I get hit. I've cried out but have never cried. Tears welled up when I whatched this - Too Real and Too Familiar.

Just wishing the best for all who suffer from this disorder. Headache doesn't even begin to describe the nightmare.

Tom

Title: Re: A New Cluster Attack Movie
Post by Jonny on May 3^rd, 2007, 8:36pm

on 05/03/07 at 12:05:43, Margi wrote:

Maybe you and I don't feel that exact pain that our sufferers do but the pain we feel is equally grim.

Wanna bet? ;;D

Title: Re: A New Cluster Attack Movie
Post by BB on May 4^th, 2007, 12:17am

on 05/03/07 at 11:40:00, Erika wrote:

no matter how hard I pray to take it from him, just to give him a break - it never happens)

This is the worst thing I have ever witnessed!!

Oh yes you have, by being such a wonderfully loving, caring supporter you have taken a large part of his pain for him.

There is one thing which is worse than CH, and that is having CH and being ALONE !

May God bless us and may the pain eases for all .

Annette

Title: Re: A New Cluster Attack Movie
Post by vietvet2tours on May 16^th, 2007, 4:07pm

bump

Title: Re: A New Cluster Attack Movie
Post by catlind on May 16^th, 2007, 4:16pm

on 04/30/07 at 08:07:01, Jackie wrote:

Tony do you not have O2?? Email me your address, a tank and regulator will be on their way, just get a script, or use the other means to get the damn tank filled. It's a medical tank, and the source it comes from is one who has more respect here than anyone else (obviously not me).

It's called pay it forward, thanks DJ.

Cat

Title: Re: A New Cluster Attack Movie
Post by artonio7 on May 16^th, 2007, 10:29pm

on 05/16/07 at 16:16:58, catlind wrote:

Cat,

Thank you. I have an M sized welding tank that I bought from a welding supply house a couple weeks ago. Our huge hearted Chuckie-poo sent me a Clustermasx via Ben in england and I have a regulator coming via the mail any day... also from Chuck so I'm covered.

I love you guys to pieces. Thank you all for your patience and gentle nagging. Please send the tank and regulator to someone else who needs it.
I promise that when I get the regulator.. the first time I use it I will film it and post it on YouTube.

Again thank you!

with warm regards,
Tony

Title: Re: A New Cluster Attack Movie
Post by BlueMeanie on May 16^th, 2007, 10:47pm

Saw most of the video tonight. Yep, that's a CH.

Thanks for sharing Tony.

Title: Re: A New Cluster Attack Movie
Post by B14CK5H33P on May 24^th, 2007, 7:18pm

I often go to youtube and ocassionally with do a CH search.

I about shit when I saw your video Tony. Thank you for allowing your pain to be seen by all, in hopes to educate others.
I also saw a Fox11 Piece with a guy named Lenny. Awesome indeed.

I saw "House" last week where the kid said his head was gonna explode and Dr House said "Give him some hallucinogenic mushrooms, and monitor him."
WTF??? I mean, I guess that's the media way of introducing CH's - but has ANY ONE HERE ever been in a massive CH episode and had the doc prescribe mushrooms?
Gimme a joke!

Just about a week ago I made a new friend on myspace named Martin. Anytime I get a friend request I check out thier page and he has on his "I am looking for anybody who suffers fro or knows someone who suffers from Clusters, so I've been chatting with him and sent him this way.

Peace,
Carl

Title: Re: A New Cluster Attack Movie
Post by vietvet2tours on May 31^st, 2007, 10:30am

Bump

Title: Re: A New Cluster Attack Movie
Post by vig on May 31^st, 2007, 5:43pm

wow

I made it all the way through on the first try....
three big waves of goosebumps
two of tears...
one I can't even describe...
I'm all shook up

as E² said: it was like looking in the mirror.

Many thanks Tony for doing this & I hope good things come of it. You're a CHero....