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        New Message Board Archives >> 2006-2007 Getting to Know Ya Posts >> Hi im steve
        
(Message started by: stephenireland on Jul 24^th, 2007, 6:06pm)

Title: Hi im steve
Post by stephenireland on Jul 24^th, 2007, 6:06pm

Hello all,

I am Steve I am 23 and have recently been diagnosed with Cluster Headaches.

I am in Portsmouth UK and really need some people to talk to about my clusters as its really getting me down recently.

My partner has been doing his research and come across this site so I thought I should pop in and say hello to everyone.

I have been having clusters for about 2 years now, being passed from pillar to post I finally found a Dr who understands and is very helpful (well more helpful than the others anyway!)

I have my 1st neurology appointment coming up and am so nervous about it! I was in hospital 2 days ago as I passed out at work from the pain. They're getting fed up with me now as all the time I am having off, I really dont know where I stand when it comes to work etc and I have tried to get disability help but again I dont understand it and the dwp dont seem to like helping either.

Anyway, I am normally a really happy go lucky, lively guy but at the moment my clusters are being a pain so my enthusiasm isnt all its usually cracked up to be.

Love to all,
thanks for the site.
Steve x

Title: Re: Hi im steve
Post by davyp on Jul 24^th, 2007, 6:22pm

Hi Steve,

welcome to the board just sorry you have a need to be here.

You might like to have a look at OUCHuk as it will give you contact with a lot of UK sufferers.
http://ouchuk.org.truecp.co.uk/html/default.asp

OUCHuk also runs a helpline staffed by CH sufferers where you can talk to someone about meds, concerns or just to get a bit more info about it all.

The helpline number is 01646 651 979 and it is an answer phone, if you leave your details 1 of the help liners will ring you back (of which i am one) and is staffed from 9am to 7pm.

Am sure you will get a few more replies asking about your symptoms and what meds you have tried/are taking and if you have found anything that helps you.

Dape

Title: Re: Hi im steve
Post by stephenireland on Jul 24^th, 2007, 6:29pm

on 07/24/07 at 18:22:40, davyp wrote:

Thank you for your message. I have come across Ouch UK and have left a message this evening. I am sure it will be nice to speak with someone who would understand more.

I am glad there are sites like this one where we can all interact and talk about our "clusterheads" etc

Thanks for the message,
where abouts in the UK are you my friend?

Title: Re: Hi im steve
Post by Guiseppi on Jul 24^th, 2007, 6:33pm

Welcome to the board from the states! It sucks to have CH but I will forever begrateful to it for leading me to the people on this site. Sounds like you're already dialed into the OUCH UK site. They'll be a world of help to you. Then stick around the board a while, some neat people here.

Guiseppi

Title: Re: Hi im steve
Post by davyp on Jul 24^th, 2007, 6:34pm

Hi Steve,

I am in East Anglia and the feeling that you get when you speak to your first cluster head is only passed by one other thing and that is meeting your first cluster head.

I know that OUCHuk are planning to do some regional meet and greets in the near future and i am sure there will be one down your way.

Dape

Title: Re: Hi im steve
Post by stephenireland on Jul 24^th, 2007, 6:36pm

Dape,

In terms of the meds and what I have tried this is what the DR suggested.

High Caffeine during an attack - Redbull (Energy drink) or ICED Black Coffee.... I don't seem to feel any different when using this method.

I have been prescribed 02 flow of up to 15lpm (but my mum said that this isnt a 100% oxy mask (not sure what that means) she has suggested that the respiritory company send me out a different one) (Does slightly ease the pain)

I tried the wafers that absorb into the bloodstream when putting them under the tongue. (these didn't work, DR said it could be because I am a big guy)

Anyway, I had a very bad attack 2 days ago when I was in a meeting at work, I passed out and was taken into hospital where they done an ECG, CAT Scan and Blood tests (all normal) Since that attack I have had several attacks very painful but thankfully not as bad as that one. I am having alot of trouble with my eyes being sore from light (wearing sunglasses now). Also I have a very sore kneck / back of head. Which I have never had before.

Thanks for reading x
Steve x

Title: Re: Hi im steve
Post by davyp on Jul 24^th, 2007, 6:47pm

Hi Steve,

The red bull needs to be ice cold and drunk as quickly as possible.

The mask needs to be a 100% nonrebreathable mask which means that you are only breathing O2 not normal room air which means the mask you have at the mo has great big holes in either side.

The Dr who told you the wafers didn't work because you are a big guy needs a good kicking in my opinion.

The sore neck / back of head is a common thing with a lot of Cher's that i have spoken to, i know i suffer quite a bit with a sore neck.

Dape