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        New Message Board Archives >> 2004-2005 Getting to Know Ya Posts >> Hello
        
(Message started by: IrnBru on Jan 17^th, 2005, 5:05pm)

Title: Hello
Post by IrnBru on Jan 17^th, 2005, 5:05pm

Hi there i am new to this web site.
I have been having CH since i was 17 (23 years) im not sure if im glad i have found fellow sufferers but the most frustrating thing about these is non sufferers not understanding the pain. sometimes i wish i could give every body just one!!!!!

Title: Re: Hello
Post by nani on Jan 17^th, 2005, 5:14pm

Welcome....and sorry you're here. You will find that this place is full of people who understand your pain. A common complaint we have is the lack of understanding in the "outside" world. There are even some colorful threads about it. Hang in there, and welcome...we're here for you. Pain free wishes, nani

Title: Re: Hello
Post by LeLimey on Jan 17^th, 2005, 5:22pm

Hello IrnBru.. nice to meet you! I'm in Nottingham too! I thought you were going to be from Scotland with a name like that! Whereabouts in Nottingham are you?

Title: Re: Hello
Post by Langa on Jan 17^th, 2005, 6:10pm

Welcome to the Family IrnBru...
:)
Langa

Title: Re: Hello
Post by RichardN on Jan 17^th, 2005, 8:21pm

Welcome

You didn't mention how you've been handling the beast all these years. How long have you been diagnosed?

Lots of caring/sharing/info and giggles here . . . . all brought together by a common beast.

Hang arround,

Be safe,

Richard

Title: Re: Hello
Post by IrnBru on Jan 18^th, 2005, 3:30am

Sorry folks, a bit more about me!
I was diagnosed as having clusters when i was 31 before then they were dismissed as sinus problems, migraines, bad headaches, toothache (would you beleive it) etc!!!
Doctors have sent me to the dentist 6 times, opticians 8 and for 3 CAT scans.
I have been given all sorts of medication including one bizzare doctor who suggest at the onset i should try masturbation to releif the tension!!!
It wasnt until i was 31 after 14 years of suffering i was sent to a specialist who actually suffered, he was very sympathetic and he used and then prescribed me imigran injection.
I am currently off work at moment having a severe bout that i have had since 16th December.
My current doctor has been good with the old imigran injections but now suggests i try imigran in a nasal spray (cost i pressume) and a new tablet that i cant remember the name, i pick them up from pharmacy this afternoon so i will keep you posted, apparently once you have had your 2 in 24 hours you cant have another dose for 4 days!! this should be interesting.

Jim

Title: Re: Hello
Post by IrnBru on Jan 18^th, 2005, 6:23am

Hi Lizzie

I am from Scotland, been living here since Nov 2004.
I live in Wilford, how about you.

How do you cope best with your CH i am always open to new suggestions and will try anything.

I see that the guys over in America get together for a sort of cnference type thing (im sure a lot of socialising too). Have you heard of anything similar in the UK.

Jim

Title: Re: Hello
Post by Filbert on Jan 18^th, 2005, 6:24am

Hi Jim and welcome to the board but sorry you have CH.
I'm sure you're right about it being a cost issue re the injections and the nasal spray. The injections are certainly the most effective for many people. The new tablets are imigran radis I think and are supposed to dissolve quicker than the old tablets but I don't know hardly anyone whose tried them yet.
You can take any two triptans in 24 hours and the stuff about not taking anymore for four days is due to the fact that the meds were originally for migraine. Hope this helps.

All the best Filbert.

Title: Re: Hello
Post by IrnBru on Jan 18^th, 2005, 6:32am

The new tablets i am getting were also offered to me as suppositaries (have i spelt that right) that i could put up my backside, has any one tried these or was my doc having a laugh.

Jim

Title: Re: Hello
Post by hilbily on Jan 18^th, 2005, 8:07am

Hi Bro. You’re in the right place. Read, read, read!! There is great info here. See the Imitrex tip, it can save you a chunk of change. Learn all you can about this malady, for knowledge is power, and so many docs don’t have a clue! Sorry that you suffer, but there is support here. Jim