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

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:

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

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

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGESTART PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

The link above explains everything in detail.

Take care,

V/R, Batch

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.
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You have an excellent support group which you should explore:  START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
    They are especially helpful with issues around your health care system.
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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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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)?

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! :D

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

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

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???? ;D

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! ;)

Joe

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?

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

Okay thankyou (:

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.

martian wrote on Aug 14^th, 2011 at 8:13pm:

Mike NZ - Pudsey Holiday.........Seriously???? ;D

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.

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?

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. :-[

Haha, it's no big deal  :D Thanks for the tip though (:

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

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.

Hi Martian..Welcome..