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southwalessunshine
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Hello everybody,
I'm a complete newcomer to this site. It was recommended by a complete stranger via yahoo answers and boy, am I glad that guy contacted me. This is an awesome site from what I've read and seen so far! It truly is amazing to read some of your experiences and relate to them. I guess you all know the feeling of feeling like the only person in the world with this condition. I have never ever spoken to anyone else who suffers with cluster headaches, so to come across you all, is truly a gift.
Well I've introduced myself and i'll sign off for now. hope to speak to some of you in the very near future.
Shaynie x
Hi again, I guess my intro was a little on the short side, what can I say? i'm a little shy and maybe the old worries of boring people with stuff they don't understand creeped in. i forgot you all know what it feels like.
Well' i've always been unsure of my symptoms as my doc is sketchy. At first I was diagnosed with migraine from a young age but after my first child at age 20 I would be laid up for 5+ days in agony about every 5-6 months. this has gotten alot worse over the yrs, and now I'm 33 I seem never to be pain free for very long.
My docs have tried me on triptans, anti depressants and migraine meds. i was referred to the headache clinic at the hospital but to be honest felt a little let down. the consultant diagnosed me with CH which was a relief but he seems to think that anti epilepsy drugs are my only option, to be honest I'm scared rigid of going down this avenue. Presently i'm on sumatriptan pills for my milder attacks and the self injections for the really bad ones. I also have some anti sickness melts which I rarely take. I've only self injected once so far so it's early days whether this is going to work long term. I was always told to steer clear of citrus fruits, dairy, caffeine at all costs but I see here that coffee, red bull etc is a great help, so I will be getting a load in. i wonder why I've been told to steer clear right up to now. I've never been offered oxygen and the meds you guys are trying seem alien to me so I'm not sure if i'm missing out on info from the docs or we don't get the same stuff here in the Uk? If any of you guys are brits here, could you let me know what you're on or have tried? Thanx.
I have been with my partner for about 9 months now and he's been a god send. No-one else in my family or friends has been much help, i think they think i have a headache and thats about it. it's been really hard for him as he gets really anxious seeing me in so much pain. i have 3 kids and being a single mum up til now has been really hard as when I get an attack my girls take over and are truly amazing. But it's really nice to have a partner who tries to understand and helps out. He started (unbeknownst to me) keeping a diary of my attacks and told me about it recently. i've hadattacks every 3 weeks or so since I met him. They start off usually with a mild attack that comes and goes all day for about 4 or 5 days. i always assumed it was one headache coming and going but it seems from reading here that they are individual headaches? Then it usually ends with the mother of all headaches on the last day. this is when the agony creeps in. up til that point I can function when I have to but soon as the kids go to school i sleep all day til they return. But when it gets bad I'm off duty! Sometimes I'm violently sick but I'm pretty sure this is just from the severity of the pain. I don't tend to dance like some of you guys, but I throw myself around the bed and try to stay in the bedroom. I bang my head on the walls and hit my head. I press my eye and temples til I want to crush my skull, and press my head against the wall, trying to push into the next room. When it subsides I sleep for a little while, til it starts up again. this can last anything from a day to about 3 days, then all of a sudden i am pain free. i astonish my family, as I get up, shower, eat a little bit then go out and walk the dog or something.
There is one thing I'm a little confused about though. I want to work desperately. my son is school age now and I want to get out there. but with this happening every 3 weeks or so I know it's not really an option. does anyone know if this could be described as a disability? i know i don't need a carer etc but I cannot work. Although i have a partner, we don't live together and I'm actually a single mum on benefits. If I cannot work due to this condition, is there any help i can get?
Well, I went from a teeny intro, to talking all your ears off! Sorry about that. Thanks forhaving the patience for reading and thanks in advance for your comments and advice.
Shaynie x
P.S. I've had 3 lumbar punches because of this damn condition and the pain from them was less than the pain of the headache! Go figure?!
Also has anyone in the Uk ever gone to ER with an attack? I've never been advised to do this and worry that I would be turned away and accused of over reacting.
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| « Last Edit: Jul 9th, 2007, 3:06pm by southwalessunshine » |
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keep your face to the sunshine and you will never see the shadow.
Alone we can do so little, together we can do so much.
Walking with a friend in the dark is better than walking alone in the light.
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Guiseppi
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Re: Newbie
« Reply #1 on: Jul 9th, 2007, 2:17pm » |
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Welcome to the board, sorry you had to come here but you won't find a more knowledgeable or useful site on the planet! When you get a chance tell us a bit more about you self! What you've tried, what has and hasn't worked in the past, what is and isn't working now. The site works so well because it's mostly an information exchange network. Perhaps we can learn a thing or two from you and maybe we can help you a bit.
So glad someone referred you here, you'll never feel alone or isolated with this head ache stuff again. Welcome to your new second home! 
Guiseppi
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Dape
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WHY BOTHER !!!!!!!!!!!!!!! !!
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Re: Newbie
« Reply #2 on: Jul 9th, 2007, 2:28pm » |
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Hi Shaynie,
Welcome aboard i am just sorry you have the need to be here.
Your introduction was a little on the short side  as we need to know things like inside leg measurement, height and all the other important info
You will probably get asked a few questions like are you episodic or CHronic, and if ECH what times of the year do you suffer, what meds you have tried and what have you found that works.
You will find lots of great info here and quite a few really good tips on how to deal with the beast.
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.
Alternatively if you would like to talk more informally then i can give you my number or you can give me yours whichever you are more comfortable with.
Hoping this post finds you pain free,
Dape
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Barry_T_Coles
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Re: Newbie
« Reply #3 on: Jul 9th, 2007, 7:05pm » |
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Hi Shaynie, 
Welcome aboard, sorry you have the need to be here but you have just stepped into the best little nut house around.
Cheers from down under
Barry
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Dape
CH.com Alumnus
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WHY BOTHER !!!!!!!!!!!!!!! !!
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Re: Newbie
« Reply #4 on: Jul 10th, 2007, 11:33am » |
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Hi Shaynie,
Now don't you feel better for the longer introduction
Lets start with the most important bit, in the UK CH is classed as a disability so you can claim Disability living allowance and you can also get help through the disability advisor at the local job centre about getting back to work.
Regarding meds if your GP looks in his BNF (the DR`s prescribing bible) he will see that the only licensed treatment for CH is Sumatriptan injections but also listed in the BNF is high flow rate Oxygen.
Red bull works wonders for some sufferers but can be a little expensive but the good thing is a lot of store own brand energy drinks work just as well and a few even taste OK so Ive been told
I am going to PM you my number and if you would like to have a chat then please feel free to call anytime of the day or night and i mean anytime.
Dape
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