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martian

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Hello
Aug 14^th, 2011 at 4:52am

Hi everyone. My name is Martin, I live in Leeds in the UK. I am 41 years old and started with clusters at 13yrs old. (Not a soul believed me or took me seriously in 1983, as you can well imagine) I self diagnosed at the age of 21 in a medical library, photo copied the small section of text, took it to my GP and said "thats what I have got." Subsequently, I have had the treatment I need or didn,t sometimes. This is the first time I have joined or posted on any website, I always liked to push my CH under the table when its not there. However, they are back and I feel like sharing (must be my age) Not sure what protocols are on here, but if any one wants to chat, I am very happy to do so! Martin

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Batch

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Control The Beast With
O2 & D3 You Must

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Bremerton, WA
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Re: Hello
Reply #1 - Aug 14^th, 2011 at 6:29am

Hey Martian,

Welcome aboard CH.com.

One of the best guidelines for the standards of care in the treatment of cluster headaches comes from a European Federation of Neurological Societies task force comprised of the top neurologists in Europe and led by Dr. Arne May. These neurologists specialize in the treatment of patients with cluster headaches and see more patients with this disorder in a week than most general neurologists see in a life time.

It's titled EFNS guidelines on the treatment of cluster headache and other trigeminal-autonomic cephalalgias.

You can find it at the following link:

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

or

The following chart summarizes the methods of acute and preventative intervention prioritized in order of efficacy.

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

or

The link above explains everything in detail.

Take care,

V/R, Batch

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« Last Edit: Aug 16^th, 2011 at 1:43am by Batch »

You love lots of things if you live around them. But there isn't any woman and there isn't any horse, that’s as lovely as a great airplane. If it's a beautiful fighter, your heart will be ever there

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Bob Johnson

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"Only the educated are
free." -Epictetus

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Kennett Square, PA (USA)
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Re: Hello
Reply #2 - Aug 14^th, 2011 at 6:32am

Most welcome! You will find several of your countrymen here.

If you will explore the site, especially the top 3 sections of messages, you will get a sense of where your postings/form, etc. be appropriate.

But start with some basic infro about you:
Please tell us where you live. Follow the next line to a message which explains why knowing your location and your medical history will help us to help you.

Cluster Headache Help and Support › Getting to Know Ya › Newbies, Help us...help you
You can add your location by editing your profile. CP Member --> profile
BUT, Please!, don't post your messages at this location. They won't get the attention you want: use the appropriate sections which follow.
====
You have an excellent support group which you should explore: Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

or

They are especially helpful with issues around your health care system.
==
Explore the buttons, left, starting with the OUCH site. We have overlapping missions, as you will see.

We can offer some basic medical information, if you will let us know your needs/interests. As an example, see the PDF file, below.

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

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(96 KB | 16 )

Bob Johnson

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Mike NZ

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Re: Hello
Reply #3 - Aug 14^th, 2011 at 9:45am

Hi Martin

I'm currently on holiday for a few weeks in Pudsey, so at the most a few miles from you, before I return to New Zealand.

You've come to the right place to learn a lot more about CHs, especially how to prevent and kill them off when they do arrive. Keep reading and asking questions as we can use our collective experience to help.

Have you got a preventive, like verapamil, lithium or topomax?

Do you have anything to abort a CH, like oxygen or imigran (imitrex)?

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Guiseppi

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San Diego to Florida 05-16-2011

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Re: Hello
Reply #4 - Aug 14^th, 2011 at 9:45am

Welcome to the board! The info Bob and Batch have given you is absolutely golden. Read it, learn it, practice it! There is so much more available now to help then there was when I started in the late 1970's. Then it was pain killers, oral cafergot and lidocaine drops! Cheesy

No real protocol here, we all share what has worked for us, and make suggestions for others to take back and discuss with their doctors. Glad you found us, welcome home.

Joe

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

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RichardN

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Re: Hello
Reply #5 - Aug 14^th, 2011 at 1:37pm

Hello Martin & Welcome to Clusterville

You've known our beast for a long time. I've had that unfortunate association since 1/01 . . . came here 2/02 and finally got the info to take to my doc and start having some control over this demon of ours.

You've landed in a club whose members know and truly understand the pain of CH . . . and are dedicated to providing info/caring/sharing.

Welcome Home

Be Safe, PFDANs

Richard

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I can live with the beast as long as I don't have to "dance" with the bastard.

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martian

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Re: Hello
Reply #6 - Aug 14^th, 2011 at 8:13pm

Wow, Thanks everyone for the warm welcome!! 28 years of never speaking to anyone who has clue how much this can hurt and then 5 turn up at once. Unbelievable!! Currently on O2 to abort, 360mg Verapamil and sumatripitan injections when needed.
Have had: Indomethacin, prednisolone and some others I cant remember to be honest. Have been told I was imagining it, wanted attention, had a toothache, a migraine and that I grinded my teeth and told to see a dentist! Long time ago mind, pre the internet.
Does anyone have any info on hereditary traits of CH? This is my main concern having two kids (one boy coming up to the age I started)
Mike NZ - Pudsey Holiday.........Seriously???? Grin

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Guiseppi

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San Diego to Florida 05-16-2011

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Re: Hello
Reply #7 - Aug 14^th, 2011 at 10:03pm

As to heriditary............I forget the exact numbers, the chances of anyone getting CH is really small.......but if you get CH the chances of your kids getting are a little bit higher....but not by much. I have 2 daughters, 25 and 27 now, neither has CH. Several on the board do have kids with CH. Something to watch for but not lose sleep over! Wink

Joe

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

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Jordyn CH.com Junior Offline I Love CH.com! Posts: 33 Battle Creek Gender:	Re: Hello Reply #8 - Aug 14^th, 2011 at 10:13pm I just thought I'd say hi (: I'm only fifteen and I'm trying to get familiar with this web site; I'm also new. I just have a question, how's the oxygen working for you?
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Guiseppi

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San Diego to Florida 05-16-2011

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Re: Hello
Reply #9 - Aug 14^th, 2011 at 10:19pm

For me, Jordyn, I feel the attack starting, that familiar "fullness" feeling in the ear, tension in the neck, the eye starts drooping and the nose starts running. I fire off the oxygen, within 6-8 minutes I am pain free. I drink a sugar free red bull while I abort with oxygen. It seems to speed up the abort, and pushes back the come backer attack. Been a life changer for me.

Joe

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

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Jordyn CH.com Junior Offline I Love CH.com! Posts: 33 Battle Creek Gender:	Re: Hello Reply #10 - Aug 14^th, 2011 at 10:21pm Okay thankyou (:
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martian CH.com Newbie Offline I Love CH.com! Posts: 8	Re: Hello Reply #11 - Aug 15^th, 2011 at 2:23am Hi Jordyn, Tough times mate to have this as a young man. As for the oxy, I am the same as Guiseppi about 5 - 10 mins at 15l. My advice is "Do not wait for a second if you feel it coming. Get on the oxy ASAP." Dont know about anyone else but I can get past a point of no return and oxy will not work after that. Good Luck Fella.
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Mike NZ CH.com Hall of Famer Offline Oxygen rocks! D3 too! Posts: 3785 Auckland, New Zealand Gender:	Re: Hello Reply #12 - Aug 15^th, 2011 at 3:04am martian wrote on Aug 14^th, 2011 at 8:13pm: Mike NZ - Pudsey Holiday.........Seriously???? Yes, it's an "historic market town" according to the road signs, although I can see why you're confused. Actually it's where I lived for a long time, so I'm over to see family and friends.
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martian CH.com Newbie Offline I Love CH.com! Posts: 8	Re: Hello Reply #13 - Aug 15^th, 2011 at 3:10am Only kidding Mike. Pudsey is ok! I live in Rothwell not 15mins from you. Hope you are having a great holiday. Back for the world cup I take it tho?
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martian CH.com Newbie Offline I Love CH.com! Posts: 8	Re: Hello Reply #14 - Aug 15^th, 2011 at 3:14am Jordyn, Sorry, just seen you are a young lady. Theres me calling you a young man? I have a nephew called Jordy, couple this with I am an out of touch old duffer and I have a reasonable excuse. Sorry.
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Jordyn CH.com Junior Offline I Love CH.com! Posts: 33 Battle Creek Gender:	Re: Hello Reply #15 - Aug 15^th, 2011 at 9:18am Haha, it's no big deal Thanks for the tip though (:
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Andy T

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try fix it!

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Yorkshire, England
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Re: Hello
Reply #16 - Aug 18^th, 2011 at 6:28am

Hi Martin

Mike admitting to being on holiday in Pudsey, that was bad. But then admitting he used to live there...!! Need we say more!! lol.
I'm just down the road from you, living near Barnsley, originally from Huddersfield.
It sounds like you n your doctor have it quite well addressed. So all I can say is you have my thoughts and wishes whilst the beast is visiting.
I only recently got on here myself and its thanks to these chaps n chapesses that I managed to get onto the O2, and I have to say, its been a godsend. Other than that, it was gonna be the 'cluster buster' route for me, which would have meant doing criminal stuff. As my work involves me with prisons, not a good option for me.
Anyhow, hope you're soon PF

Andrew

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Mike NZ

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Oxygen rocks! D3 too!

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Auckland, New Zealand
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Re: Hello
Reply #17 - Aug 18^th, 2011 at 12:02pm

Andy T wrote on Aug 18^th, 2011 at 6:28am:

Hi Martin

Mike admitting to being on holiday in Pudsey, that was bad. But then admitting he used to live there...!! Need we say more!! lol.

ROTFLMAO

Well, I'm currently over in Horseforth, so awaiting comments on my alternate location.

Anyway, I now live in Auckland, New Zealand, so about as far from Pudsey as you can get. Hopefully that hasn't put anyone else off from visiting this wonderful location.

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mikstudie CH.com Old Timer Offline Beastmaster Posts: 284 Westland Mi. Gender:	Re: Hello Reply #18 - Aug 18^th, 2011 at 12:52pm Hi Martian..Welcome..
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