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New CH.com Forum › Cluster Headache Help and Support › Getting to Know Ya › New to site old sufferer

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New to site old sufferer (Read 847 times)

DavidM

CH.com Newbie

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You know what I am going
through

Posts: 2
Ely UK
Gender: male

New to site old sufferer
Feb 27^th, 2011 at 7:40am

Hi All,
I have been a CH sufferer for over 30 years just keep hoping they will stop. It was great to dsicover thisite and to know I am not alone in this. My GP does not really understand the ferocity of the pain. I am going through a period of attacks at the moment. Nothing seems to help. I worry about trying new things as it may encourage the attacks. currently up to 6 per night.

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Batty

CH.com Veteran

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I thought it was CH...but
my helmet is too tight!

Posts: 210
E'Port Cheshire UK
Gender: male

Re: New to site old sufferer
Reply #1 - Feb 27^th, 2011 at 8:04am

Hi David,

You found us, and now we are here to help you manage this....
The Cavalry will be along with questions and the Info you need!
And 6 per night sucks! You need O2 and fast to reduce these!

Quote:

My GP does not really understand the ferocity of the pain

THIS IS THE BIGGEST HURDLE ALL OF US FACE,AT SOME TIME!
So your'e not alone with this one too!

Hang in there David!

Respect

Gary

« Last Edit: Feb 27^th, 2011 at 8:07am by Batty »

"An old Wolf may lose his teeth, but never his nature.."

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DavidM CH.com Newbie Offline You know what I am going through Posts: 2 Ely UK Gender:	Re: New to site old sufferer Reply #2 - Feb 27^th, 2011 at 8:11am Thanks for you kind messages of support it is greatly apprecaited. Regards David
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Guiseppi

CH.com Moderator
CH.com Alumnus

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San Diego to Florida 05-16-2011

Posts: 12063
SAN DIEGO, CALIFORNIA USA
Gender: male

Re: New to site old sufferer
Reply #3 - Feb 27^th, 2011 at 9:22am

If you're GP doesn't understand CH, and most do not, you need to get a referral to a headache specialist neuro, and get busy educating yourself! Start with this link:

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

Oxygen has changed my life with CH. Went from 90-120 minute rides, to 6-8 minute aborts. I feel an attack coming on, start huffing pure oxygen, 6-8 minutes later I'm pain free. It's a little harder to get oxygen where you are, but well worth the effort. Then visit this site:

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

It discusses alternative methods to treating CH, outside of mainstream medicine. They are cranking out some serious success stories.

Finally visit our sister site, with some area specific information for you:

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

When you get a chance, give us a run down of the meds you used, how you used them, doses etc. Many have tried great prevent meds like Verapamil, at doses way too low to work. HOW you use many of the CH meds is critical to their success. I'll stress again, your best bet is a referral to a "headache specialist neurologist". There are just too many effective treatments available now to be rocking in pain. We'll help you any way we can.

Joe

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

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Bob Johnson

CH.com Alumnus

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"Only the educated are
free." -Epictetus

Posts: 5965
Kennett Square, PA (USA)
Gender: male

Re: New to site old sufferer
Reply #4 - Feb 27^th, 2011 at 9:22am

David, above all else you need some support to help you deal with your fear. You know it has put you into a trap from which there is no escape.

Please contact your excellent support group and gain support:

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

======
Also you will find some ideas for support in this somewhat fragmented bit-and-pieces of messages:

Message: "Dyno", Tenby, Wales, UK, Aug 9, '09:
[Bob-excludes Wales per Dyno]
looking at their website it looks like a better alternative Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

Why not ask to see the top man in the country - Dr. Manjit Matharu at UCL. Under Patient Choice - look at the link below - you have the right to choose who you see.

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

.

and this - copied from the OUCH(UK) website

Quote:

You can ask your GP to refer you to one of our hospitals for treatment
Central to the government’s healthcare policy is that patients should be given the opportunity to be more involved in making decisions about their healthcare. If you and your GP agree that you need to be referred to see a specialist, then you have a choice of at least four local hospitals or clinics. Since May 2006, that choice has been extended. You can now also choose to go to any Foundation Trust in the country, including UCLH. Whether you’re from Cornwall or Camden, as a patient you now have the right to choose UCLH. You can ask your GP to refer you to one of our hospitals for treatment.

[Source: UCL website]
===============================

City of London Migraine Clinic [and other types] Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

Bob Johnson

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