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Cluster Headache Help and Support >> Getting to Know Ya >> Im New!!
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Message started by suzieq6343 on Jan 10th, 2011 at 4:10pm

Title: Im New!!
Post by suzieq6343 on Jan 10th, 2011 at 4:10pm
Hi All
I'm new to this forum so please bear with me!
I am a CH, have been for 15 years but have only recently been diagnosed (12 months ago)I'm now 43 a mum of 2 and a psychiatric nurse
I am so pleased I have found this forum, I have spent all evening reading the info and experiences you share and although I wouldn't wish clusters on my worst enemy it is so good to know that I'm not alone...a feeling often experienced in the early hours of the morning when in the throws of an attack.
I am surprised at the similarity in the symptoms discussed here and will find some comfort when I'm bashing the side of my head and wishing I could remove my eye that there are others who know exactly how I feel.
My husband tries to understand but it's so difficult to put across the PAIN in words.
I'll stop ranting now but will be back soon!

Title: Re: Im New!!
Post by Guiseppi on Jan 10th, 2011 at 4:41pm
As  anurse you have access to what we CH'ers consider gold. High flow oxygen. Using a non re breather mask, you will probbaly find you can abort an attack in about 6-8 minutes.

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

Read this for a more thorough oxygen briefing!

Welcome to the board, so glad you found us!

Joe

Title: Re: Im New!!
Post by bejeeber on Jan 10th, 2011 at 4:57pm

37-41withrestrictions wrote on Jan 10th, 2011 at 4:10pm:
I wouldn't wish clusters on my worst enemy


The same thought has certainly occurred to me many times, and it seems to be a familiar refrain indeed amongst CH'ers.  :o

That link Joe supplied is golden alright. Glad you'll be coming back because lots of us have found relief based on info and advice here, and I bet you too could get out of that head banging zone.

LOTS and lots of good stuff to learn here, and for a preview of what they're doing for CH preventative over at clusterbusters.com, here's a Newsweek article on the subject of CH and busting: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE



Title: Re: Im New!!
Post by Jeannie on Jan 10th, 2011 at 5:00pm
Hi SuzieQ!!!!   Cute name!

Welcome to the boards!   You know, I think that knowing that others know exactly our pain is the best AND worst part of belonging here.  On one hand, it is so wonderful to know that you can speak freely and no one will ever tell you that it's "just a headache".  On the other hand, it's heart breaking to know that other's feel the pain too.

Make yourself at home!   We're glad you're here....but sorry you need to be.

Jeannie

Title: Re: Im New!!
Post by Linda_Howell on Jan 10th, 2011 at 5:39pm
Putting across what this pain feels like is almost useless, except to those of us who know.  Don't be expecting your husband to understand.  Even the majority of Doctors don't.   

Can you bring your husband to this site and have him read around here?  He doesn't even need to sign in if he doesn't want to, but just reading some of our stories and a lot of the links just MAY give him a clue.

          Welcome to 'the house that pain' built Susie.  Hope you stick around and read here for hints and suggestions about things you can do to relieve a lot of the pain, as well as....  if there is any breaking updates on treatment....you'll hear it first right here.  Pure oxygen with a non-rebreather mask and a regulator that goes to at LEAST 15 lpm (most of us have a higher flow at 25 to 45)  is imperative and has helped more people than anything else in aborting a headache. ( God I HATE that word headache)

          Linda

Title: Re: Im New!!
Post by suzieq6343 on Jan 15th, 2011 at 11:03am
Hi All
thank you for you replies.

Linda I would love for my hubby to have a look at the site, read the exeriences and see that Cclusters are horrible things but after coming off the site full of enthusiasm about the information and advice I had read he told me not to be so stupd as it's only a headache.... so much for the understanding spouse I thought I had - maybe I wish he could have just 1 CH just to see how it feels! then he definately wouldnt be liking it to just a headache.
Sorry not usually a moaner!

Title: Re: Im New!!
Post by bejeeber on Jan 16th, 2011 at 2:31am
Ow about the hubby's comment.  :-?

I shouldn't be so naive as to think what I'm about  to suggest could alter your hubby's view, because such attempts often make no difference whatsoever, but your top UK headache specialist Dr. Goadsby (possibly the world's top specialist) refers to CH as "probably the worst pain that humans experience". I've included the full quote below in case you think it would be worth trying to get him to read it:

The pain of cluster headaches is markedly greater than in other headache conditions, including severe migraines; experts have suggested that it may be the most painful condition known to medical science. Female patients have reported it as being more severe than childbirth.[4] Dr. Peter Goadsby, Professor of Clinical Neurology at University College London, a leading researcher on the condition has commented:

"Cluster headache is probably the worst pain that humans experience. I know that’s quite a strong remark to make, but if you ask a cluster headache patient if they’ve had a worse experience, they’ll universally say they haven't. Women with cluster headache will tell you that an attack is worse than giving birth. So you can imagine that these people give birth without anesthetic once or twice a day, for six, eight, or ten weeks at a time, and then have a break. It's just awful."

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