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Topic: Hello Cluster Busters! (Read 688 times) |
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steve62uk
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Hello Cluster Busters!
« on: Nov 1st, 2005, 12:26pm » |
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I am Steve Bowden Originally from Fulham in West London now living in Acton West London.
I have had about a 3 or 4 year break from my headaches, but they have recently returned with vigour.
I think maybe the stress of the last year have triggered them off.
My mother, Father and Nephew passed away within a year of each other.
I haven't read through the entire site as yet, but was wondering if stress alone could be a factor in setting these 'Cluster Migraines' off?
I started to get these attacks at about 20 years of age and they have been chipping away at my pain threshold for more then 20 years.
My Doctor gave me Imigran tablets which give some relief and before that the Doctor was attempting to control them with Tegretol (Normally for controlling epilepsy.)
I have heard that these headaches are also called 'suicide headaches.' How charming!
Acupuncture does work a little but isn't convenient.
I found that by running cold water over the area of my face and forehead affected that I get a little respite.
Respect to all that suffer with this horrible affliction including concerned family members who usually feel quite useless when the attacks 'kick in.'
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Stephen.
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LeLimey
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OUCH-US - Less "ME" and more "WE"
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Re: Hello Cluster Busters!
« Reply #1 on: Nov 1st, 2005, 1:12pm » |
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Hi Steve nice to meet you! I'm an ex Londoner (living in Notts) now but I'm originally from Victoria.
I'm sorry to hear of all your family losses, what a hellish year its been for you.
There is no such thing as cluster migraines by the way, thats an expression used by stupid doctors!
Imigran tablets are not effective for CH, they take too long. You need the imigran injections, its only a subcutaneous injection so doesn't hurt don't worry! That will work within 5-10 minutes for you.
My personal first choice is O2. I can abort breathing O2 at 15lpm in 5-7 minutes which is incredible. You need to be using a non rebreather mask or a clustermasx.
Have a look at OUCH UK, they have a comprehensive list of treatments available in the UK and info on how to get O2 prescribed etc. There is also a helpline which is fantastic as talking to another sufferer is indescribable
http://www.clusterheadaches.org.uk/home/index.cfm?address=../home/txt_we lcome.cfm&added=Dec2001&code=AD
Ice helps alot of people, try wrapping a bag of peas in a tea towel instead of the water, it won't be as aggravating.
Hope this helps, read and read a bit more, its your best weapon! Ask all the questions you like, the more you know the more you can be proactive in your treatment.
Good luck, let us know how you are doing okay?
Regards
Helen
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steve62uk
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Re: Hello Cluster Busters!
« Reply #2 on: Nov 1st, 2005, 3:42pm » |
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Hi Helen,
I have a friend in Shepherds Bush who has the jab rather then the tablets, But just like the rest of the country there seems to be a bit of a post code prescription lottery going on.
My last GP wouldn't let me have it because he says it's to expensive.
I have recently moved to Acton and have changed doctors aswell as postcode's so I will enquire again.
Im on the sick (Not because of the headaches) so luckily prescription charges are not a problem for me.
Yes it's been a year of loss to my family and I thought nothing else could happen.
Life goes on eh?
Thanks for the advice and speedy reply.
Good health to you.
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Stephen.
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LeLimey
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Re: Hello Cluster Busters!
« Reply #3 on: Nov 1st, 2005, 3:57pm » |
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Oh Steve have I ever got some good news for you!
No more post code lottery for a start.
Imigran injections are currently the ONLY licensed treatment for CH in the UK. Not the tablets and not the nasal sprays either.
Tell your doctor to look in his BNF (British National Formulary or doctors bible!) under cluster headaches.
He will see that he cannot withold the injections on grounds of cost. If he is still antsy tell him you will go to the PCT. He won't like it because they will be compelled to over ride him so that should fix that for you!
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MJ
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Re: Hello Cluster Busters!
« Reply #4 on: Nov 2nd, 2005, 1:52am » |
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Hi Steve
Regarding stress and CH.
I have found that a relaxation period after long stressfull times is a huge trigger of clusters for me.
MJ
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MJ
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zanychef
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i'm busting with a masx cant really go wrong can i
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Re: Hello Cluster Busters!
« Reply #5 on: Nov 2nd, 2005, 3:17am » |
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sorry about your losses steve 
you found the right place here though
as helen says give your doc grief over the imigran inj.
threatening with the PCT normally works wonders or ask to speak to the practice manager about mistreatment
print everything you need about o2 off from here too 
that normally helps and as it is cheaper than imigran they normally go for that too
pfs to you
ian
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plenty of time to sleep now me headaches aint too bad
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BMoneeTheMoneeMan
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Re: Hello Cluster Busters!
« Reply #6 on: Nov 4th, 2005, 3:14am » |
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Welcome Steve.
Sounds like you've already got some new british friends!
Hope you can get some relief, theres lots of info here.
PF wishes
BMonee
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"Fool me once, shame on, shame on you. Fool - can't get fooled again"
Think of how stupid the average person is, and then realize half the population is stupider than that.
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