chronicclusterheadaches.co.uk

Ike · Posted: Thu Feb 21, 2008 7:34 pm Post subject: welcome Bigsi110

Hiya, please take the time to tell us a little about your self, i see you are episodic are you in cycle now ?

please feel free to ask all you like we are here to help all we can

Ike
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If you dance with the devil the devil don't change, The devil changes you

Email me, Admin@chronicclusterheadaches.co.uk

Annette · Posted: Thu Feb 21, 2008 8:37 pm Post subject:

Hello and welcome

Glad you came join us.

phil h · Posted: Thu Feb 21, 2008 11:24 pm Post subject:

HELLO....... and welcome...

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"Suddenly a huge phantom bird sank three talons of its angry claws deeply into my head and face and tried to lift me. No warnings, no preliminary signs. Just wham! A massive, killing pain came over my right eye. " Frank Capra

BigSi110 · Posted: Fri Feb 22, 2008 7:29 am Post subject:

Hello all!

Thanks for the welcome.

I'm an episodic sufferer, although I'm not currently suffering from any pain, but a cluster is due.

I'm 37 and have been suffering since I was 14. My attacks are generally once a year, but last for around 3 months, varying in intensity.

I've read most of what you have written and can identify with so much of it - it's almost as if I'm reading my own feelings.

For me, the attacks get worse each time they hit.

I'm not on any O2, although the pain certainly warrants it, and I haven't been to see a doctor about it for a while. I've been seeing doctors about this for a long time and it's only recently that they've acknowledged there's anything wrong, beyond just the usual migraine diagnosis.

It's that reaction from my doctor that has caused me to shun any medical help. I've tried various prescription drugs, but none work (forgive me, but I cannot remember their names, although Zomox comes to mind).

I find high-strength Nurofen helps, but as the attacks deepen, that too becomes next to useless.

I have a few theories about the attacks - what causes them etc, but have noticed that once I arrive at a 'solution', the next attack proves me wrong.

Many of you seem to reflect that viewpoint.

I can only read what you have to say and stand in awe of all of you. This is a terrible affliction to have and one which no-one else really understands, apart from close friends and family who have witnessed your suffering first-hand.

I will endeavour to offer my support to all of you and will try and share some of my experiences along the way.
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All in good time...

Annette · Posted: Fri Feb 22, 2008 7:40 am Post subject:

I am really sorry to hear you have had such bad luck with previous doctors. Unfortunately this has been too common with sufferers of this condition due to its rareness.

Hopefully as we join force to speak out more, it will soon make a difference and proper education on the condition as well as how to treat it become available to those in healthcare.

Oxygen is a God send for the majority of Chers. It works so well, its cheap and its doesnt have many of the horrible side effects of other oral meds.

The usual approach to a CH cycle is a prednisone taper to quickly curb the attacks, started at the same time as some preventives such as verapamil, lithium, depakote, topamax , neurontin etc plus abortives such as oxygen and imigran injections.

I am glad you are painfree now but if a cycle is looming then its good to get prepared so that when its here it will be kicked back quickly and efficiently.

However, I pray that this painfree time will last for you forever.

Thanks for sharing, it means a lot to us

Ike · Posted: Fri Feb 22, 2008 11:50 am Post subject:

Bigsi

I know just what you are saying about the doctors i really do! It has taken me so long to get a doctor that understands.

phil h · Posted: Fri Feb 22, 2008 12:27 pm Post subject:

BigSi , Welcome aboard . Sorry for your CH's , but I'm glad you found your way here . O2 has been the most effective thing in my arsemial of meds . I usually respond well to a prednisone taper to reduce the # and intensity of the hits . I always use ice packs as the beast approaches , during and after . You do need to get an MD . The people here have been through it all and will understand your feeling and thoughts . Our enemy the beast is a shapeshifting ever changing b--tard . Read all you can , share the feelings as much as you can : and we will will support and try and help you on this journey. You are not alone ..... :smt104
_________________
"Suddenly a huge phantom bird sank three talons of its angry claws deeply into my head and face and tried to lift me. No warnings, no preliminary signs. Just wham! A massive, killing pain came over my right eye. " Frank Capra

BigSi110 · Posted: Fri Feb 22, 2008 12:45 pm Post subject:

Funny you should call it The Beast, as that's the term I tend to use too.

Thanks for your kind words.

By the looks of it, my suffering is low compared to the rest of you.

I only hope I can help you all in some way and it's really good to have found you.
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All in good time...

phil h · Posted: Fri Feb 22, 2008 1:05 pm Post subject:

Don't down play your pain . We don't compare here , we just identify we each others pain and hope . I am glad you are here . Welcome again . You could post your story , so we could get to know you better and faster ....... but that's not a neceessity........... LOVE and HOPE are the watch words here .................. And now I present you with the picture of your beast......................... MEGA1.gif Nasty B--tard that he is.................... We are here to help and not judge one another ... We have a chair for you ..... Pull up and sit a spell...... We have been waiting for you and other lost members of this tribe...............

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"Suddenly a huge phantom bird sank three talons of its angry claws deeply into my head and face and tried to lift me. No warnings, no preliminary signs. Just wham! A massive, killing pain came over my right eye. " Frank Capra

Sherri · Posted: Fri Feb 22, 2008 4:39 pm Post subject:

I'm so glad you found us...

You know what...after alot of years of sufferring, then saying "the hell with it" and just dealing with it...

I GOT ANGRY. And funny, I started to get treated differently.

It's really good to have you....we really do KNOW AND BELIEVE you're pain.

Sherri

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"Great spirits have always encountered VIOLENT opposition from the MEDIOCRITIES." -Einstein.

Tami · Posted: Sat Feb 23, 2008 10:21 pm Post subject:

I am very glad u found us and hope you stick around.
We r all good people and try and help you out when ever we can.

Hope you are still pain free and stay that way

Much love