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Topic: Hello From South Wales GB (Read 298 times) |
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Saffy
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Hello From South Wales GB
« on: Sep 5th, 2007, 4:51am » |
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I thought it was time to say hello properly and a big THANKYOU! for the site which is of course great and I have learned loads.
For years I have cycles of so called "migraines" that seemed to last for longer and longer and found it increasingly difficult to keep family life and work going etc etc.
Everyone I know was tired of hearing that I had a headache!!! I actually began to hide my headaches from people unless they were really bad. My doctor thought perhaps it was chronic fatigue related as I was TIRED ALL THE TIME!!!! Now what could possibly have been causing that tiredness? 
Eventually I got to the point where a fortnight with just shadows amongst months of constant CH was the best it got and now I am quietly upping the Topomax which I think may be helping.
Trouble is when it comes to the bottom line a headache isn't something you can show the doctor now is it.....!
I am not a lady who likes to give up on things and so I still run my little business, have my family, walk my dogs, but I haven't played my drums or ridden my horse for ages, that is the tiredness and the lost time not the pain, people don't thnk of that that don't get CH but I WILL get back to them eventually.
Wouldn't it be nice if as I was typing this a nice little pink pill was just going on the market that would cure everyones CH for good.  La La land! Nice thought though.
Saffy
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| « Last Edit: Sep 5th, 2007, 6:26am by Saffy » |
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Bob_Johnson
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Re: Hello From South Wales GB
« Reply #1 on: Sep 5th, 2007, 8:13am » |
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Hope that you have made contact with OUCH-UK:
http://ouchuk.org
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Bob Johnson
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Saffy
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Re: Hello From South Wales GB
« Reply #2 on: Sep 5th, 2007, 8:23am » |
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Hello Bob,
No I haven't as yet but I had noticed it mentioned on this site and had intended to pop in soon.
Thanks 
Saffy
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LeLimey
CH.com Alumnus
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OUCH-US - Less "ME" and more "WE"
 
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Re: Hello From South Wales GB
« Reply #3 on: Sep 5th, 2007, 2:55pm » |
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Hello Saffy
Its nice to meet you - I just wish it wasn't here!
I see you're on Topomax, have you got any abortive meds sch as Imigran injections or Oxygen?
There are loads of suggestions I can offer to help but contacting OUCH UK would definitely be top of the list!
They have a support board where you can ask questions
http://www.ouchuk.org/phpbb2/
A helpline you can phone 01646 651979 and a little welsh dragon lady (Hello Val!) who can help you with "local" queries since Wales has a different method of deciding healthcare sometimes  Seriously, Val will sort you out and if you call the helpline or put a message on the support board she'll pick up on it.
The phone number is an answerphone BTW - leave your name and number and another sufferer will call you back to help you.
I'm Helen and if there is ever anything I can do to help, even if its just nod as you rant you just shout okay?!
Best wishes
Helen
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The arsehole I'm divorcing needs to get a life and stop stalking mine
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Saffy
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Posts: 79
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Re: Hello From South Wales GB
« Reply #4 on: Sep 5th, 2007, 6:57pm » |
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Thanks Hellen
That was a very useful letter of ideas which WILL get used!
Haven't tried any of the things you mention as yet.
Have found that Dixarit slows the pace of the onset of symptoms right down making them easier for me to deal with. I have been taking it nearly a year now and find it very useful but I don't know how long before it stops working - hope it doesn't.
I hope that coupled with Topamax, if that also works for me I can turn the volume knob right down to bearable and get on with life!
Thanks again 
Saffy
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| « Last Edit: Sep 5th, 2007, 6:59pm by Saffy » |
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