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Topic: Room for one more??? (Read 2371 times) |
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Ten
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Room for one more???
« on: Jan 2nd, 2008, 8:57pm » |
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Hey guys, not only am I new to this site im also new to this whole tinter web thingy too. So bear with me and i'll apologize
now for any slip ups I make. One thing I am not new to tho is CH which i've been all too familiar with for the last ten years my longest cycle to date lasting about six weeks. What amazes me is that ive only just really discovered what CH really are, just now in the last ten minutes and believe me ive been to the emergency room with my skull crushed between my palms and seen countless doctors. Now i'm not trying to be a tough guy. I realize everyones experience is personal and maybe im just lucky. Maybe my pain aint that bad but not once in 10 years have I ever cried about my pain. Banged my head off the floor/wall sure. Tried to crush my skull sure. Thought about plunging a
a power drill thru my face to relieve the pressure sure. Even thought about taking one pain killer too many but I never ever cried. I didn't want to let it win, didn't want to give in didn't want to seem weak. I'd been on this site for about 30 seconds and I wanted to cry. The relief was immense. I felt empowered, I felt validated I wanted to climb to the top of the tallest building around shake my fist and scream "SEE ITS NOT JUST A FUCKING HEADACHE" Thank you guys. Just for being here. Thats all it took. I've never before even met another person who suffers like we do. To find out I had an entire family that I didn't even know about almost broke me. My heart goes out to each and every one of you brave brave people. And man women and child if it all gets too much then come lay your head on my lap and i'll stroke it til the cows come home. I KNOW how you feel. More importantly for me is that you KNOW how I feel. I am sick to death of the blank stares, faked concern and complete lack of knowledge about this condition. It's nice to finally find a bunch of people that actually care. But then when you live with what we do how could you possibly not. Keep your chin up peeps and don't let the bastards grind you down. Yours in pain David. XXX
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Linda_Howell
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Re: Room for one more???
« Reply #1 on: Jan 2nd, 2008, 10:21pm » |
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Never cried eh? Well then you don't belong here, cause you'll probably laugh at all of us who have.... including the big tough guys on the block here. Just kidding ....sort of.
There is no disgrace in crying when you are suffering the worst pain known to man. None at all.
You are no longer alone my friend. You are among others who know exactly what you are going through.
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Kindness, is gladdening the hearts of those who are traveling the dark journey with us.
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RichardN
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Re: Room for one more???
« Reply #2 on: Jan 2nd, 2008, 10:26pm » |
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Hi David & Welcome Home
I had the same reaction when I came here 2/02 . . . at the end of my rope . . . and found that not only was I not alone, but that these folks had the info/ammo to help me get my life back.
Do you have 02? A miracle for those of us it works for (over 70%). I can't take Imitrex (artery blockage and high cholesterol, so 02 is my only abortive . . . can usually kill the beast in minutes if used early on in the attack.
Helen (Le Limey) will be along soon. She is totally equipped to help you deal with the UK medical system.
So glad you found us. Let us know more about you and how you've coped with our beast (what's worked, what hasn't).
Read, read, read . . . and ask any questions you might have . . . the answers you will get here come from folks who truly know your pain.
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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Ten
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Re: Room for one more???
« Reply #3 on: Jan 2nd, 2008, 11:20pm » |
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I really dont wanna be quite so controversial with whats only my second post on here, but I have to disagree with you on a coupla points Linda. Firstly I DO belong here. I've wanted to be here for the last ten years. Second I would never laugh at anybody crying about anything. I have spent many a night sat in tears after an argument with a loved one or a breaking up with a girl I loved. like I said everyones experience is personal and maybe im just a little luckier then most, I wasn't trying to belittle or trivialize anybody elses experiences I promise. Finally as bad as they are (certainly the most intense physical pain I have ever known) I know that there are things out there that are both physically and mentally a whole
lot more painful. And compared to the guys going thru them we as a whole are the lucky ones. I'm not here for your judgement I can get plenty of that here. I ask only what I give. Love and support. Apart from that. Thankyou both so much for your kind words. I'm gonna take a little time to find my way around here now so i'll post again tomorrow and let you all know a little more about me. Took me a little while to realise what you meant by o2 Richard but i've just seen the tab at the side that says oxygen info haha. I'm so impatient I should have had a good read before I started bothering you all. Just couldn't wait to meet ya lol. Keep smiling folks and thank you so much for being there I really wasn't expecting a reply this quickly I know that you know how much it means to me. xxx
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Linda_Howell
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Re: Room for one more???
« Reply #4 on: Jan 2nd, 2008, 11:47pm » |
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If this is what you're refering to....
Quote:Well then you don't belong here, cause you'll probably laugh at all of us who have.... including the big tough guys on the block here. Just kidding ....sort of.
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Then I guess you are correct in that you need to read a bit more around here. I suspect in about 1 to 3 days of reading you will understand what I was trying to say. 
No judgements, Linda 
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Ree
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Re: Room for one more???
« Reply #5 on: Jan 2nd, 2008, 11:56pm » |
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Linda was only kidding... Ten welcome to the family. We already have our tough guy though so you will have to be the second tough guy around... ( see we all have a sense of humor)
My name is Ree. My husband is a CH sufferer for over 20 years we stopped counting. He recently ended a cycle that was about 16-17 weeks. His longest cycle has been about 7 months so we were glad for the shorter version. You will find a wealth of information here, as well as many friends that share this horrible bond with you.
Be well and pain free tonight...
Ree
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Linda_Howell
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Re: Room for one more???
« Reply #6 on: Jan 3rd, 2008, 12:04am » |
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At least Ree knew what I was saying.
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RichardN
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Re: Room for one more???
« Reply #7 on: Jan 3rd, 2008, 12:22am » |
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Just that slightly different sense of humor . . . if you watch BBC much, I tend to find some routines hilarious, while others I evidently just don't "get" (though obviously appreciated by the live audience)
Helen will clue him in on our "oddities"?
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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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George_J
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Re: Room for one more???
« Reply #8 on: Jan 3rd, 2008, 12:28am » |
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Hi David,
Welcome home. 
Best wishes,
George
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Ah! The foreigners put on such airs
Wearing the tangerine suits
And their harlequin eyes.
The pain they inspire
Draws in harmonica melodies
And the feathers of birds
Which flame up at their touch.
It all comes to light in the sheer
Debonair.
(Ellen)
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kcopelin
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Re: Room for one more???
« Reply #9 on: Jan 3rd, 2008, 1:41am » |
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Welcome home David! Remember, a burden shared is no longer a burden, and you are no longer alone. Most of us could finish each others sentences, and even though we respond to different meds, or react to the pain differently, the understanding runs deeper than the differences.
((hugs))
kathy
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DennisM1045
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Re: Room for one more???
« Reply #10 on: Jan 3rd, 2008, 9:44am » |
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Hi David,
There is always room for one more. Welcome to your new home.
-Dennis-
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Guiseppi
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Re: Room for one more???
« Reply #11 on: Jan 3rd, 2008, 10:20am » |
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Welcome to your new second home ten. You'll find we kid and tease each other a lot here. You've already met Linda, she'll drive 1,000 miles in a blizzard to bring you a trex shot if you needed it!
When you get a chance, tell us a little about what you've used for treatments in the past, what has and hasn't worked for you. This board is a constant work in progress. I'm forever amazed at how much stuff we learn from each other. Maybe you'll teach us something, maybe we'll give you something new to try!
It is a great feeling the first time you log on here and realize you'll NEVER be alone again. Welcome.
Guiseppi
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Ten
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Re: Room for one more???
« Reply #12 on: Jan 3rd, 2008, 12:25pm » |
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Im so sorry for being so tetchy guys. Im sorry I misunderstood your post Linda honestly I am. I do have a sense of humour I swear im british for goodness sakes! haha (see) Was just up late and a bit cranky. I was so so pleased to find this place, so pleased to finally find a home, a place where I know im understood, and I thought for a second I was being asked to leave after my first post!! like oh fuck! even the cluster heads think im making it up and dont want me! Again im sorry but im so used to being ignored and dismissed that sometimes I think I actually expect it. There is one word in your post Linda that I should have cherished and completely overlooked. You called me your friend. Me, a limey half way round the world who you've never met, never even laid eyes on and you called me your friend. Thankyou my friend (my first ever 'merican' buddy!!!) and thankyou all. You words and encouragement are completely overwhelming I actually feel all warm and fuzzy inside! All my love david. xxx
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LeLimey
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Re: Room for one more???
« Reply #13 on: Jan 3rd, 2008, 12:27pm » |
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Hello Ten,
Its nice to meet you even if you ARE another bloody Dave (Linda do I HAVE to play nice?! )
I'm not surprised you'r new to the tinternet. I see you're from Hull. You've only recently changed over from bags of salt to £'s sterling for currency haven't you?! 
In case you hadn't noticed - I'm the resident bitch
Seriously now though, I promise I'll help all I can.
I've got somequestions for you though and believe me, although it seems like I'm just a nosey old bag (which ! am!) these will help us suggest options for you to discuss with your doctor. We aren't doctors, we are expert patients though and we know enough to suggest options for your doctor to tailor to your own medical history.
Have you had an MRI at any point?
Have you been referred to a neuro?
What meds are you currently taking and what have you tried in the past?
Did any of them help?
Have you ever tried O2?
How long do your attacks last without treatment and with treatment?
How many attacks a day do you average?
Are they mainly at night or during the day?
Do you get a cycle at the same time every year or does it vary?
Whats your bank account number and sort code? (Hey it's worth a try! )
Right then Juglugs - get typing! We're waiting!
Hang in there hon, you're home now
Helen
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LeLimey
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Re: Room for one more???
« Reply #14 on: Jan 3rd, 2008, 12:28pm » |
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on Jan 3rd, 2008, 12:25pm, Ten wrote:| I do have a sense of humour |
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Course you do sossidge.
You're male.
You're called David.
With odds against you like that if you didn't have a sense of humour we'd have to use you as a doorstop!
edited to be even ruder
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Linda_Howell
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Re: Room for one more???
« Reply #15 on: Jan 3rd, 2008, 12:54pm » |
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Quote:| Im sorry I misunderstood your post Linda honestly I am. I do have a sense of humour I swear im british for goodness sakes! haha (see) Was just up late and a bit cranky. I was so so pleased to find this place, so pleased to finally find a home, a place where I know im understood, and I thought for a second I was being asked to leave after my first post!! like oh fuck! even the cluster heads think im making it up and dont want me! Again im sorry but im so used to being ignored and dismissed that sometimes I think I actually expect it. There is one word in your post Linda that I should have cherished and completely overlooked. You called me your friend. Me, a limey half way round the world who you've never met, never even laid eyes on and you called me your friend. Thankyou my friend (my first ever 'merican' buddy!!!) and thankyou all. You words and encouragement are completely overwhelming I actually feel all warm and fuzzy inside! |
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GOOD. I am so glad you realize that I would never ever insult you or tell you to go away unless you were trying to sell us some magical cure. 
Please do try to answer some of the questions posed here, so we can try to help you sort through everything and maybe even help you.
Welcome Dave...you have a home here for as long as you want. Linda
Yes, Helen you have to be nice. It was his Mum who named him David.
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Ten
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Re: Room for one more???
« Reply #16 on: Jan 3rd, 2008, 1:12pm » |
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Ok, a little about me. My name is david Im 26 years old 27 on sat. Woot woot. Unfortunately I started a cycle on xmas eve so im dreading it! I live in the north east of blighty a city called Hull. I've been a cluster head since I was 16. I really really wish that I could give you guys some advice. Wish I could say something that might change someones life. Tell you about some magic pill ive found that cures you outright. The truth is ive only ever aborted one attack EVER in 10 years and im not proud about how I did it. I have tried every kind of painkiller that you can buy over the counter and have taken so many over the years that my kidneys are starting to give me grief. For a long time I thought I had chronic sinusitis and so have tried ever kind of nasal spray and de-congestion tablet on the market. I've even tried the
uber painkillers like kapake.......no joy. Ok so back to the one that I DID manage to abort. I was working away from home, staying in a house with a few of my workmates some of whom smoked quite a lot of pot. We came home from work one day and I started cook my tea. Befofe I'd even managed to sit down and take one mouthful the beast was smacking me upside the head. My appetite vanished instantly I felt like I was gonna chunder and within 5 mins was writhing on the floor in agony. This was the first time this particular group of friends had ever witnessed this and there concern was very touching. One of them approached me with what was obviously a joint and said "here son smoke this it'll sort you right out." and so I did. I took my plate of food into the bedroom placed it on the side, lay down on the bed and began to smoke. After my first drag I knew there was more in this joint then just pot. I could taste it, a nasty chemical taste but I didn't care because by the 5th drag I was painfree absolutely 100% pain free. Shit I even felt good! For about 60 seconds before I fell asleep. I woke at about 4 in the morning absolutely ravenous but still feeling good. (actually ate the food i'd placed on the side the night before. A plate full of cold potato waffles, fish fingers and baked beans pretty gross eh?) The next day after a LOT of cajoling I managed to get my friend to own up and tell me what he had given me. The answer........ dia morphine (not sure if thats the right spelling.) That incident took place 3 years ago and ive
never had it again since. Not out of principles or morals but out of a fear of addiction, plus I wouldn't even know where to find it. Lost touch with that guy. I suppose the best I could hope for would be for somebody medically minded to read this story and do some research into why it worked and come up with a safe alternative. I wouldn't suggest or reccomend any one gets involved with dia morphine. Peace out David. xxx
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Brew
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Re: Room for one more???
« Reply #17 on: Jan 3rd, 2008, 1:14pm » |
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Of course you have a sense of humor, David. Linda sensed that - otherwise she wouldn't have unloaded both barrels on you at the same time!
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LeLimey
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Re: Room for one more???
« Reply #18 on: Jan 3rd, 2008, 1:36pm » |
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Yeah Linda - he who shall not be named was named by HIS mother too don't forget!
David - Happy Birthday for Saturday!
I'm going to give you loads of info here so pay a-ten-shun!
First off - meds from the doctor.
CH is a vascular headache. The pain is caused by blood vessels swelling and crushing nerves so what we need to abort the pain is vaso constrictors. Ordinary painkillers are like throwing smarties at a shark. Bloody useless. They do not work in the right way and nothing, even morphine has aborted a hit for me bar vaso constrictors. All strong painkillers do is take me away - not the pain.
So - with that said vaso constrictors are:
Abortives - these work on blocking the attack once it's started.
Imigran subcutaneous injections. These are the only licensed treatment for CH in the UK to date. You can use up to two per day and they will abort the pain in 5-10 minutes. Its like an epi-pen, you don't see the needle you just push a button and count to ten before removing it. Dead easy even for wimps!
The downside is they only last for two hours so if you are getting more than two hits a day then you need something else as well.
Oxygen Oh how I love this stuff! Using O2 at 15LPM with a non rebreather mask is the mutts nuts. I can abort a hit in 5-7 minutes if I get on the O2 early enough. Bloody brilliant and no side effects!
Zomig or Zolmitriptan There are many types of triptans. All are vaso constrictors but the only ones which are really any use for CH are Imigran injections (referred to as Imitrex on this site) and Zomig nasal sprays. For some reason the Imigran nasal just arent so good and they are too short lasting to be a viable option. Zomig will take about 10 minutes to kick in but they last for up to 8 hours and you can use up to 3 per day. Depending on how you get attacked this may be a better triptan option but I'd still recommend O2 as my first choice.
As a non "medical" option I'd also recommend red bull or generic brands of high energy drinks. I use asda's own for instance. As long as they have caffeine and taurine they will work! Caffeine is a vaso constrictor and taurine enhances the effect of the caffeine - think of it as a turbo boost! You can use strong coffee too but those little cans are highly portable! The key is to chug it as fast as you can at first twinge. Never mind what mummy says. Mr Manners can go to hell! You chug it and belch my friend!!
Ice or heat also work well. Heat is a trigger for me but some people swear by it. My best friends are frozen peas and corn If you look in the good old pound shops you can often see those chemical ice packs going cheap and they are useful to have with you too for at work or in the car or whatever.
You said your cycle is usually about six weeks which is relatively short so I personally would choose to ignore preventatives as they work on the length of the cycle and not individual hits. You don't want to do anything that may make your cycle longer and quite frankly, most prevents take a couple of weeks to kick in as you need to taper up on the dosage. I'll tell you more about them if you like but there is a lot on this post already and I don't want to swamp you, given that you are a mere male and a northener to boot!
Oh and check your pm's Top rght hand corner of the screen!
Helen
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Ten
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Re: Room for one more???
« Reply #19 on: Jan 3rd, 2008, 1:39pm » |
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Ok helen first of all whats £ sterling? you're right we've got rid of the salt but we use groats now. your questions.
Never had an mri
never been referred (despite lots of begging)
given up on meds (kidneys)
attacks last between 1-3 hours some at night some during the
day. never had more than 2 attacks in a 24 hours.
Never tried o2
No pattern at all to my cycles, my last one before this was oct 2006. I actually thought I was rid of them. Its the longest ive ever been without an attack. Before that i'd have at least one cycle every 6 months. xxx
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Ten
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Re: Room for one more???
« Reply #20 on: Jan 3rd, 2008, 2:13pm » |
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Oh my goodness Helen you're a brummy! its a good job we're online cos you wouldn't be able to take the piss out of anybody with an accent like your's Thankyou for your message I do believe you are one of the sweetest people I ever talked to yam yam. x
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LeLimey
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Re: Room for one more???
« Reply #21 on: Jan 3rd, 2008, 2:38pm » |
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I'm not a bloody brummie you cheeky northern pigeon fancying WASSOCK! I'll have you know I'm a Londoner born and bred and I'm only in the Midlands (Bingham is just outside Nottingham) because I was STUPID enough to marry a bloke from the black country 
£'s sterling is pounds sterling - that is the currency of England numbnuts. Don't they teach anything but how to work out the odds on the greyhounds and that Hull RFC are shandy drinking limp wristed netball players?!
Its your rights under the NHS act to be referred to a specialist in your area of need. So for you that is a headache specialist neuro not just any old neuro. If your doctor kicks off then we go to the PCT! Don't worry, I'll back you all the way hon. We need to get you O2 as well and some other abortives. Make a doctors appt in the AM and give me a ring and I'll talk you through what you need to ask for.
I hope he's bolshie - I'm in the mood for a good fight!
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mummymac
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Re: Room for one more???
« Reply #22 on: Jan 3rd, 2008, 3:49pm » |
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Quote:| I'd been on this site for about 30 seconds and I wanted to cry. The relief was immense. I felt empowered, I felt validated I wanted to climb to the top of the tallest building around shake my fist and scream "SEE ITS NOT JUST A FUCKING HEADACHE" Thank you guys. Just for being here |
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Hello David
I felt just the same, but I did cry right from the bottom of my little cotten socks .
You will find all sorts of information and help here for the taking and giving ( I haven't got that far yet - still learning).
They are a wonderful bunch of people here on this site.
Quote:| Just that slightly different sense of humor . . . if you watch BBC much, I tend to find some routines hilarious, while others I evidently just don't "get" (though obviously appreciated by the live audience) |
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Tanya
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mummymac
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Re: Room for one more???
« Reply #23 on: Jan 3rd, 2008, 3:51pm » |
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I never finished my post properley
What I wished to say is
Only mad dogs and English men stay out in the midday sun, also do not always get the american humor
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Tanya
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Linda_Howell
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Re: Room for one more???
« Reply #24 on: Jan 3rd, 2008, 4:32pm » |
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Quote:--------------------------------------------------------------------------------
I'm not a bloody brummie you cheeky northern pigeon fancying WASSOCK! I'll have you know I'm a Londoner born and bred and I'm only in the Midlands (Bingham is just outside Nottingham) because I was STUPID enough to marry a bloke from the black country
£'s sterling is pounds sterling - that is the currency of England numbnuts. Don't they teach anything but how to work out the odds on the greyhounds and that Hull RFC are shandy drinking limp wristed netball players?!
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"I was stupid enough to marry a bloke" is the ONLY thing here that I understood. LMAO you guys really do talk funny.
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Kindness, is gladdening the hearts of those who are traveling the dark journey with us.
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test rss