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Topic: The New Brit (Read 1181 times) |
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Stuart-NJ
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The New Brit
« on: Aug 20th, 2005, 5:00am » |
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Dear Friends 
I recently got a computer of my own, and the world has opened up. It seems that I am not alone and this site has thousands of members, which staggers me. First I thought I was alone - then I found a small group; now I have this family of people. Hello 
I have been tortured by Chronic Cluster Headaches for 15 years.  Over that time a whole host of drugs have been tried on me; to try to help me or just to see what happens. Most of the time these drugs cause me harm, one a permanent mark.
A different drug where I was a guinea pig, was the second stage drug trial of Sumatriptan – which made me violently ill. This had the effect of me never being put on any of the subsequent triptan drugs; which stay longer in the body.
I have tried complementary (alternative) medicine, but to no avail. I have though noted the information on this site about Kudzu, and I look on with interest.
A recent great light has been the information about Oxygen. In my case the Doctors have always been drug orientated, so a few years ago oxygen was played down and I did not get to use it. NOW I find that it helps a lot of people – I NEED HELP !! I have contacted my local doctor who could give it to me, but he chooses to write to my hospital consultant for him to prescribe (he is on holiday so I will have to wait…)
With something that may help ease my agonies, at the very tip of my fingers… I have to wait. My local doctor picked up on the implied criticism I made of him, he replied, “I am not being obstructive”. NO but its extremely bloody annoying that I have to wait. 
The only drug I take is Diazepam; to quite literally sedate myself and get some respite when its all too much – I am restricted to taking it twice a week. What is ironic is that it itself gives me a different and additional headache. (this can be controled by paracetamol.) The Diazepam does the job ‘at the moment’, I get some sleep and rest when I am going mad with pain and distress. I say at the moment because it is starting to aggravate my intestine when I take it now.
I will here add that I was very interested to see the kip scale – I myself made up a scale which I have used as a means of explaining my CH.
Finally my CCH has become so bad, it has caused me to become agoraphobic. For a long time I have gone out with someone by my side – now ‘if’ I go out its only in the immediate area to a local shop. >> What is so exciting about the Oxygen is that there is a new lightweight portable O2 cylinder – If the O2 helps then it may well give me some confidence to explore the world again.
Anyway – I am here and VERY pleased to be reading the shared experiences.
Stuart
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BobG
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Re: The New Brit
« Reply #1 on: Aug 20th, 2005, 5:18am » |
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Hello Stuart. Welcome to the board. Sorry you had a reason to search for this site but glad you found it. There's more CH information here than any place in the world.
We have a lot of people from Britian here. On the left side of your screen click the OUCH website button. From there you can get the OUCH-UK website. You'll find a bunch of great suffering folks close by you.
Good luck getting the O2. Almost everyone that has tried has had success.
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Bob_Johnson
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Re: The New Brit
« Reply #2 on: Aug 20th, 2005, 7:37am » |
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You might explore: WWW.MELDRUM.DEMON.CO.UK/migraine. At bottom of home page, look for FAQ on clusters: four sections of extensive material; strong on treatment options.
This book may be expensive for you (check Amazon) but it's very good.
MANAGEMENT OF HEADACHE AND HEADACHE MEDICATIONS, 2nd ed. Lawrence D. Robbins, M.D.; pub. by Springer. $49 at Amazon.Com. It covers all types of headache and is primarily focused on medications. While the two chapters on CH total 42-pages, the actual relevant material is longer because of multiple references to material in chapters on migraine, reflecting the overlap in drugs used to treat. I'd suggest reading the chapters on migraine for three reasons: he makes references to CH & medications which are not in the index; there are "clinical pearls" about how to approach the treatment of headache; and, you gain better perspective on the nature of headache, in general, and the complexities of treatment (which need to be considered when we create expectations about what is possible). Finally, women will appreciate & benefit from his running information on hormones/menstrual cycles as they affect headache. Chapter on headache following head trauma, also. Obviously, I'm impressed with Robbins' work (even if the book needs the touch of a good editor!) (Somewhat longer review/content statement at 3/22/00, "Good book...."
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Bob Johnson
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Jonny
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Re: The New Brit
« Reply #3 on: Aug 20th, 2005, 8:05am » |
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Heres a link to info about 02 that the family put together, you may want to print it and show it to your doc.
http://www.maplefallswebdesign.com/misc/oxygen/oxygen.htm
Good luck, Dude
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It is up to YOU to educate yourself and then help your doctor plan your treatment. If you just sit down in front of your doctor and say "make me better" you are setting yourself up for a great deal of pain.
- Guiseppi
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Ree
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Re: The New Brit
« Reply #4 on: Aug 20th, 2005, 9:59am » |
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Welcome Stuart... My husband is a sufferer and is in a cycle right now that seems as if its going to be a doozey... Be well and know you have a family here now and it definately eases the suffering to know you aren't alone..... God bless Ree
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Stuart-NJ
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Re: The New Brit
« Reply #5 on: Aug 20th, 2005, 9:27pm » |
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Dear All,
I am grateful for the information - I concede that I need to do more research for myself. UK doctors are often uncommunicative! 
I now find that this site will be helpful because of the US time delay...
I am awake and its 3.15am  The US is 5/6 hours behind, just after 9/10pm. Evening Folks
I hope to get to know some of you. 
Stuart
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mariebeth
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Re: The New Brit
« Reply #6 on: Aug 21st, 2005, 5:02pm » |
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[center][/center]
Is it just me or is it difficult to get any kind of proper treatment in the uk?
When i was first diagnosed, it took over a year to get a consultation with a neurologist. The exam lasted 10 minutes after which I was told that I have the condition and that it would probably only go away if i became pregnant again.
My GP rereferred me after i had been using Epilim for a couple of years without much relief. I have only ever been prescribed diclofenac or brufen for the pain. After another year's wait a new consultant gave me amitryptaline which has succeeded a little in cutting down the number of attacks although I now get the attacks on both sides.
Oxygen has never been mentioned as a possible treatment for me.
Do our (British) GPs lack awareness of this condition? I'd be interested to hear from other brits re this. I live in the west of Scotland and have suffered for about 8 years.
mariebeth
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LeLimey
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Re: The New Brit
« Reply #7 on: Aug 21st, 2005, 5:55pm » |
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Hi Marie Beth
Its nice to meet you, I'm sorry to hear of your pretty horrific experiences. Sadly worldwide its a lottery as to whether you will get a GP who is prepared to listen or refer you and then an educated neuro even.. getting to a neuro is sometimes only half the battle as plenty of people here will testify.
The good news is there is an awful lot that can be done to help you and that we can do to help you help yourself (and support you in that process!)
First and foremost check out OUCH UK
http://www.clusterheadaches.org.uk/home/index.cfm?address=../home/txt_we lcome.cfm&added=Dec2001&code=AD
Alot of the drugs mentioned on this site have different names in the UK and you need to know the names your doctor will recognise and be able to prescribe.
In addition to the link above there is one aimed specifically at GP's which you might want to give to your doctor for him to take a look at.
http://gpinfo.ouchuk.org/
There is also a helpline which is manned by volunteers, people like you and me who are cluster headaches sufferers. If you have enver spoken to someone else with cluster headaches please give this number a ring, 0161 2721702 its an answerphone, you leave your name and number and they will call you back. I promise you.. you can't help but feel better!
I can't change your meds or your doctors attitude from today but I can promise you we will help you fight both of those and I can promise you faithfully you are no longer alone. You have all of us, you are one of us.. and no one gets left behind!
Stay in touch and let us know how you are doing and if there is anything you want or need to know okay?
Helen
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mariebeth
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Re: The New Brit
« Reply #8 on: Aug 21st, 2005, 6:15pm » |
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Thanks Helen,
Checked out those links. There's a lot of good reading for me.
At least now I'm not alone
thanks all
mariebeth
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LeLimey
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Re: The New Brit
« Reply #9 on: Aug 21st, 2005, 6:24pm » |
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Marie do NOT be put off by thinking you have to join OUCH UK to get advice and help.. you don't.. there is the support board there you can use and you can use the helpline too. Obviously you get to use the members boards of you join but the help and everything will be there for you regardless.. I just wanted to make that clear because I realised I hadn't at first! (Call me thick.. everyone else does! )
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mariebeth
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Re: The New Brit
« Reply #10 on: Aug 22nd, 2005, 4:01am » |
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Thanks for that, it's just great to be able to speak to people who don't think I'm mad and understand the pain etc. I don't know anybody else with CH but I can see that's about to change,
thanks
mariebeth
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Jonny
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Re: The New Brit
« Reply #11 on: Aug 22nd, 2005, 5:35pm » |
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on Aug 22nd, 2005, 4:01am, mariebeth wrote:Thanks for that, it's just great to be able to speak to people who don't think I'm mad and understand the pain etc. I don't know anybody else with CH but I can see that's about to change,
thanks
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Hang around, Marie........Frank will probably say something gay to you, Don will probably make fun of you and I will probably yell at you......There is no better CH family on earth than right here 
Welcome aboard, Sweetie!
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It is up to YOU to educate yourself and then help your doctor plan your treatment. If you just sit down in front of your doctor and say "make me better" you are setting yourself up for a great deal of pain.
- Guiseppi
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Stuart-NJ
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Words are interesting things..
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Re: The New Brit
« Reply #12 on: Aug 22nd, 2005, 7:18pm » |
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Dear All,
Having started this thread introducing myself, several have noted OUCH (UK) to others...
I find like all sites, it has its advantages and disadvantages.
I find this 'original' site has more information, as well as it being a bigger family; and I got a fantastic IM recently - thanks.
I will be posting more on the message board when I get round to it. {couple of doc appointments to get through...}
Stuart
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| « Last Edit: Aug 22nd, 2005, 7:19pm by Stuart-NJ » |
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RichardN
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Re: The New Brit
« Reply #13 on: Aug 22nd, 2005, 11:18pm » |
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Welcome Stuart and Marie
Both of you make sure you put 02 on the "must do" list. It is SO effective for so many of us (about 70%) as an abortive, if it works for you, you'll be angry at yourself for all the pain you've endured unnecessarily. I can't take triptans (arterie blockage and high cholesterol . . . . dangerous), so 02 is my only abortive and has worked for me for over three years now. Has kept me from many a "dance" with the beast.
One of my favorite mottos on this board is, "nothing works for everyone, but SOMETHING works for everyone", and here the goal is to find the "something" that works for you.
Keep posting . . . . you've just landed in a big family of folks who truly know your pain and the difficulties dealing with the beast . . . . MUCH info and understanding here.
Be Safe PFDANs
Richard
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I can live with the beast as long as I don't have to "dance" with the bastard.
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pubgirl
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Hello and welcome from me Marie Beth (I'm a fellow Brit known as Wendy the Brit or pubgirl- a few people who shall remain nameless also call me W the B or Dubya Da Bee)
and Stuart-NJ , nice to see you posting such pleasant things here.
and if I might borrow a great phrase from Mia, just this once "positive light and energy" to you
Everyone, meet hdido sorry  , Stuart
Wendy
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| « Last Edit: Aug 26th, 2005, 5:09am by pubgirl » |
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don
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Hiiiiiiiiiiiiiii--------------------Di------------------------Ho Stewart
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pubgirl
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This is LeLimey giving therapy to Stuart, she's just TOO kind
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don
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Which one is LeLimey?
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pubgirl
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Ooooooerrrr Don, you're in for it now!
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LeLimey
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Re: The New Brit
« Reply #19 on: Aug 26th, 2005, 6:11am » |
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on Aug 22nd, 2005, 7:18pm, Stuart-NJ wrote:Dear All,
Having started this thread introducing myself, several have noted OUCH (UK) to others...
I find like all sites, it has its advantages and disadvantages.
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You're right there STU-PID!! On OUCH UK I can't say
WANKER
like I can here... don't you just love ch.com?!!
once more with feeling..
WANKER!!!!
Don.. up yours!!  No on second thoughts.. come here darling I'm going to give you a dirty great snog!!  I know you hate it when I'm nice to you!!
Wendy if it wasn't for the fact I don't want to leave a poor little beagle motherless I'd off Don in a minute!!
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| « Last Edit: Aug 26th, 2005, 6:12am by LeLimey » |
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pubgirl
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on Aug 26th, 2005, 6:11am, LeLimey wrote:
I'd off Don in a minute!!
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In my world Helen, that's rude!
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pubgirl
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But it is so much better to be able to be rude here
Stuart/hdido/John in NYC/PCCMCK and all your other names
I love you as you have stopped me working today and what I should be doing is VERY dull
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LeLimey
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Re: The New Brit
« Reply #22 on: Aug 26th, 2005, 6:26am » |
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on Aug 26th, 2005, 6:21am, pubgirl wrote:
In my world Helen, that's rude! |
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Wendy is it? I thought it means to do him in? oooo errr missus!
Don I mean make you croak not grunt okay?!
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pubgirl
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I shall be polite and ladylike. To "off" someone in my part of the world is to give them hand relief
W the B
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LeLimey
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Re: The New Brit
« Reply #24 on: Aug 26th, 2005, 6:33am » |
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phew.. I'm alright then Wendy!
Those that have met me know that even though I'm a short arse my hands aren't that little so that would be a physical impossibility where Don is concerned!
But lets get back to the dickless wonder in point and not the dickless wonder in hand or not as the case maybe..
Oh JohnStuartDooDaaDooDaaDay. Can I ask you a question?
Is the reason you have so many names because your mother couldn't decide which battalion your father was?
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