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Topic: I've had three headaches..what can i expect now??? (Read 440 times) |
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Tory
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I've had three headaches..what can i expect now???
« on: Jun 21st, 2004, 3:56pm » |
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Last week I had what everyone here has described. It woke me up and lasted for 15 minutes. I was nearly ready to go to the hospital, thinking I must be dying, when it suddenly stopped. The next day I was fine until the evening. I had another one, 20 minutes. Then just as I got to sleep another woke me. This one lasted just over an hour. It stopped while I was waiting in casualty. I went to the doctors and was sent for tests. I looked up my symptoms on the internet, found this site, and now know what it was. I have not had one since(4 days), but have had a dull ache around the eye. Is it going to come back? How come I only got 3? What's the first cluster usually like? This has shaken me up so much. Thank goodness for this site.
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Superpain
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Re: I've had three headaches..what can i expect no
« Reply #1 on: Jun 21st, 2004, 3:59pm » |
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Hopefully you just have a badger in your head or something like that. 
If it turns out to be clusters....  You ain't seen nothin yet...
Keep a chart of your headaches with the time, duration and intensity. Once they get pretty regular get into see a good headache neuro. In the meantime educate yourself here. Being an informed patient is your best defense.
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Chris
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TxBasslady
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Re: I've had three headaches..what can i expect no
« Reply #2 on: Jun 22nd, 2004, 12:04am » |
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Tory,
My CH started off alot like yours. Had 2 ha's in 2 days, actually mine woke me out of a sound sleep, an hour and 1/2 after going to sleep. They didn't last long, but for damn sure, it was the worst pain I ever felt. Then I went for a week or 10 days before having another. This went on for a year and 1/2. Then they became a regular event each night after I went to sleep. The pain was more intense.....and the ha's lasted for an hour 1/2 to 2 hours. I had actually gone into a full blown cycle.
The info on this board is remarkable. With the great support of other sufferers and supporters, I armed myself with what I needed to fight the beast.
Keep a diary.....this is a great help to your doc. Write down the time of day or night, describe the pain , keep track of how long the ha lasts.
Read everything here that you can. You will learn alot!
PF vibes,
Jean
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Bob_Johnson
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Re: I've had three headaches..what can i expect no
« Reply #3 on: Jun 22nd, 2004, 7:58am » |
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This is one of life's little surprises which can arouse a lot of anxiety. The best defense is knowledge. I strongly suggest getting either the second or third title because books present information in a more organized, systematic way, giving you ideas of how to understand and treat your headache.
Cluster often first show up with irregular features, i.e., quality of pain, site of pain, frequency, etc. It may take several months, even years, before a clear, stable picture develops. As long as you are working with a good doc who has experience-AND INTEREST-in dealing with headache you can get through this period of change in good shape.
In the meanwhile, read the material here and on OUCH. Stay in touch. With Cluster, the pain does not signify life endangering threat and most of us have learned how to treat ourselves and live with, rather then being controlled by, this curve ball.
HANDBOOK OF HEADACHE MANAGEMENT, 2nd ed., Au. Joel Saper, MD, 1999, Lippincott Williams & Wilkins. A highly condensed volume for doctors but good for "advanced" clusterheads who have a grasp of medical terminology and medications. Covers all types of headache with the section on cluster being brief. Sections on general considerations in treatment and on medications are important.
MANAGEMENT OF HEADACHE AND HEADACHE MEDICATIONS, 2nd ed. Lawrence D. Robbins, M.D.; pub. by Springer. $49 at Amazon.Com. This volume is better organized and easier to read for nonprofessionals compared to Saper's book. 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...."
HEADACHE HELP, Revised edition, 2000; Lawrence Robbins, M.D., Houghton Mifflin, $15. Written for a nonprofessional audience, it contains almost all the material in the preceding volume but it's much easier reading. Highly recommended.
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don
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Re: I've had three headaches..what can i expect no
« Reply #4 on: Jun 22nd, 2004, 9:12pm » |
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Quote:| I've had three headaches..what can i expect now??? |
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The fourth.
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Tory
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Re: I've had three headaches..what can i expect no
« Reply #5 on: Jun 23rd, 2004, 11:17am » |
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YUP! Got the fourth today....at work...while I was teaching. The kids thought i'd gone mad, sending them off early, before the bell. Luckily, we have a medical room where I could just ride it out. Only 20 minutes. The previous three have been at night. This one was at 10 this morning. I'm keeping a diary of them. Still waiting for a referral to the neurologist. Here in sunny England, we are lucky enough to have the NHS.............which means a 4 month wait to see anyone!!! Maybe I'll go private. I wonder how much oxygen is from the local dealer???
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Prense
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Re: I've had three headaches..what can i expect no
« Reply #6 on: Jun 23rd, 2004, 11:50am » |
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I'm sure O2 is cheap as hell compared to the triptans.
Oh, and if your attacks remain in the vicinity of 15-20 minutes, an abortive may not be worth very much to you.
Chris
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| « Last Edit: Jun 23rd, 2004, 11:52am by Prense » |
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don
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Re: I've had three headaches..what can i expect no
« Reply #7 on: Jun 23rd, 2004, 4:45pm » |
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Here are a few pain managemnet techniques you can try until you get to see a neuro.
http://www.clusterheadaches.org/resources/non_script_treat.htm
I've also found that power hammering a ten penny nail through my kneecaps sometimes takes my mind off the head pain but I wouldn't suggest it.
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| « Last Edit: Jun 23rd, 2004, 4:46pm by don » |
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pubgirl
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Re: I've had three headaches..what can i expect no
« Reply #8 on: Jun 23rd, 2004, 8:44pm » |
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Tory
It is good to see a neuro to get the diagnosis, but you don't need to wait until then to get the right treatments, your GP can prescribe all of them for you. Buying 02 is very expensive and hard to do here, and the correct regulator for the high flow rate we need is even more expensive.
It will be a very long post if I tell you all the things you need to know to get treatments from your GP including the correct 02 prescription, so the easiest thing to say is to visit OUCH UK, the support group for cluster sufferers in the UK on www.clusterheadaches.org.uk You can either just read the info on the site, post any questions or ring the Helpline and someone will talk you through what you need to know and do, or you can message me there or here if you prefer.
What is most important right now is to get yourself a good abortive to stop the pain FAST!.
Wendy
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Superpain
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Re: I've had three headaches..what can i expect no
« Reply #9 on: Jun 24th, 2004, 3:53pm » |
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Is it hard to get welder's O2 in the UK?
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Chris
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pubgirl
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Re: I've had three headaches..what can i expect no
« Reply #10 on: Jun 24th, 2004, 9:26pm » |
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Dunno about welders 02 because prescriptions cost only £6.40 here so there has never been any need to try and get it
Wendy
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Superpain
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Re: I've had three headaches..what can i expect no
« Reply #11 on: Jun 25th, 2004, 3:47am » |
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on Jun 24th, 2004, 9:26pm, pubgirl wrote:Dunno about welders 02 because prescriptions cost only £6.40 here so there has never been any need to try and get it
Wendy |
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Quote:| Buying 02 is very expensive and hard to do here, and the correct regulator for the high flow rate we need is even more expensive. |
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Ummmm..... 
Somewhat contradictory. Case in point...
I really wish I could goto the convention. I'd love to have a headache killing showdown with my method and the "prescribed method", especially if it were prescribed in the UK....
Free or nearly free healthcare must be great. But it sounds like you have enough bullshit to put up with there to negate the positive aspects of it all when you are in such a time senstive situation as getting hit with clusters....
With help from others here in the whole idea of obtaining O2 without a script, and a litlle ingenuity of my own, I have developed a technique to kill headaches in less than 5 minutes. Say what you want, say what you will.... I challenge you to find anyone here with that "killtime" on a headache. And I'd even go so far to say that at least, I believe the people that a majority of people that O2 does not work for, are doing it wrong, and I COULD KILL THEIR HEADACHE with my technique.
I've helped one person that toiled with O2 for years with no success and a couple that were new to the whole idea and have had no failures so far. I'm not selling a new idea, just a new approach. And the idea of getting prescribed 6lpm or 8 lpm is just sad... If that works for you in 20 minutes and you want to wait that long, then OK... If you have 12 lpm and it takes you 10 or more minutes and your OK with that, then OK.
Imagine how long it takes to fill your lungs 25 times without having to wait for psi, in the best case. In the worst case, maybe 75 times... And your headache is GONE.
My method saves the gas. It's 2-5 times quicker. And it's about 20% of the cost of med O2, at least here... I can get 20 headaches out of an "E" tank. That's $18 here.
If anyone wants explicit directions and is ready for relief, and isn't "scared" of welders O2, PM me....
Money back guarantee! 
Maybe I'll just make a pdf....
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| « Last Edit: Jun 25th, 2004, 3:48am by Superpain » |
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pubgirl
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Re: I've had three headaches..what can i expect no
« Reply #12 on: Jun 25th, 2004, 4:04am » |
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Sounds like I didn't make sense Superpain. 
So here goes for the Brits trying to get 02:
A prescription charge on the National Health Service in the UK is £6.40 per item, whatever that item is. Your 'item' could read 100 Imigran jabs (never going to happen of course) but it would still be £6.40, so a 1360l tank of 02 would be £6.40 too, as would a regulator which actually costs about £120.
If you can get it (and it can be hard because it is perceived as 'dangerous' here and private buyers are usually blocked) you can buy Medical quality 02 here but it costs literally £hundreds for the kit.
What I'm saying to Tory is:
1. sit on your doctors head until he gives you an 02 prescription (make sure you print off the stuff from OUCh UK to make sure you get the right things though)
if that fails
2. Welders 02 may be an option, but you might still have to buy the regulator I think?? (not sure what flow rate welders 02 is??)
3. Buying your 02 from medical sources is not really an option r.e. prohibitive cost and permission to buy
Wendy
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| « Last Edit: Jun 25th, 2004, 7:29pm by pubgirl » |
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Superpain
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Re: I've had three headaches..what can i expect no
« Reply #13 on: Jun 25th, 2004, 4:43am » |
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When using a welding regulator "LPM" is moot.
You can crank up a welding regulator to probably the equivalent of 200lpm or more.... Enough to blow the leaves off your lawn if you so wanted to.
That's the great thing about it, and why I believe I have a much higher kill rate on the headaches.
I've seen 8-12 lpm units and that barely puts out enough O2 flow to steadily breathe without having to gasp outside air. Maybe I just have big lungs, but....
With my method I inhale O2 as quickly as I can fill my lungs as full as possible, then shut off the valve. That's about 1/2 to 1 full twist on the regulator valve. I hold for 2-3 seconds and repeat. Not only am I saving a shitload of gas from flowing out into the room, but I am much more effectively FLOODING my blood with O2.
And that is how you kill a headache. You CANNOT be fucking around waiting for the oxygen. You need to hit it like your a pot smoker and this is your last bong hit forever, each time. Hit it fast, hit it hard, each time and repeat. And within an average of 25 hits (approximately 2-3 minutes) the headache is gone! And I've only used maybe 100psi out of a 2000psi E tank.
I don't know how welder's O2 is regulated in the UK, but here you do not tell them what you are using it for (they don't ask) and it's about 20% of the cost of medical O2 as far as I know.
BTW, I have a script for a whole setup with a regulator that will goto 15lpm, the mask and all that stuff and I haven't even tried it because of the cost and especially the success that I've had with "my way".
I read about so many of you on O2 for 20 minutes... I would never have the patience to fuck with even turning on the tank if I knew it was going to take 20 minutes.
20 minutes means you are not getting enough oxygen fast enough.
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Chris
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Superpain
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Re: I've had three headaches..what can i expect no
« Reply #14 on: Jun 25th, 2004, 4:49am » |
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And as far as the cost...
The whole setup cost me less than $200 USD, with $18 refills. The way I do it as long as i don't have too many "stubborn" headaches i can get about 20 headaches per E tank.
That's less than $1 per headache.
Who here would be willing to pay $1 to kill a headache in less than 5 minutes? I'm willing to bet that anyone that has ever had a cluster with be happy to pay a buck per headache.
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pubgirl
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Re: I've had three headaches..what can i expect no
« Reply #15 on: Jun 25th, 2004, 5:44am » |
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I like this a lot Superpain!. It fits with how 02 feels to me, the faster I get it and the deeper I can breathe it, and the more I can flood my brain with it, the better it works. If I feck about at 9l minute it takes ages to go. If I wack in hard and breathe like it's the last joint I'm ever going to get, it works MUCH faster.
methinks I should go find a welder!
W
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Superpain
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Re: I've had three headaches..what can i expect no
« Reply #16 on: Jun 25th, 2004, 4:02pm » |
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Saving the world one head at a time...
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Tory
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Re: The welder Factor??
« Reply #17 on: Jun 25th, 2004, 5:36pm » |
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Ok. So, difficult conversation to follow but, am I to get it on prescription or from a welder? Do I contact BoC? where do I get the regulator from? I like the idea of O2- no side effects, and the way that superpain takes it, very fast.
Wendy, fellow Brit, where do you get yours?
Tory
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Superpain
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Re: I've had three headaches..what can i expect no
« Reply #18 on: Jun 25th, 2004, 5:48pm » |
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As I understand it, correct me if I'm wrong Wendy... The script is pretty hard to get , but the regulator is very expensive and even harder to get, and you'll probably have to pay out of pocket for it... Is that right?
A welding regulator is $40-$75 here for a simple one.
The tank is about $100.
The hose and clamp I use about $5...
Refills are $18.
As I understand it, your biggest obstacle is getting a regulator for a medical tank that will provide high enough flow rate. This is not an issue with a welding regulator as it will exceed the flow rate you need by 100x... And it's alot cheaper...
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Chris
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Tory
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Re: I've had three headaches..what can i expect no
« Reply #19 on: Jun 25th, 2004, 6:19pm » |
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Ok, but where can I get it from? I'm not really that bothered about the cost.Is there a company I can order online from?
Tory ( I think I'm going to have one soon..tonight)
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pubgirl
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Re: I've had three headaches..what can i expect no
« Reply #20 on: Jun 25th, 2004, 7:20pm » |
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Simplest answer Tory?
Get your GP to prescribe it!
1) Prescription for the BOC small, portable CD cylinder as a try out to see if it works for you. The joy of this one is that it has a built in 15litre per minute regulator and most of the major chemists can get it for you, or even have them in stock.
Go here for details of what you need:
http://www.clusterheadaches.org.uk/home/index.cfm?address=../treatments/ txt_drug_oxygen_regs_cd.cfm&added=11/08/03&code=CD
2. If it works, then get a 1360 litre tank prescription and borrow/buy a regulator.
Go here for details of this
http://www.clusterheadaches.org.uk/home/index.cfm?address=../treatments/ txt_drug_oxygen_regs.cfm&added=Jan2001&code=CD
You can try online but I seriously doubt you'll have much joy,I have never spoken to anyone who has just bought medical oxygen in the Uk as it costs fortunes as a tank only lasts days, if that. There are sites e.g.http://www.spservices.co.uk/lifeline.htm but I have no idea if a private buyer can use them.
As far as obtaining welding oxygen goes, I would ask a local welder where he gets his/hers!
Wendy
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| « Last Edit: Jun 25th, 2004, 7:43pm by pubgirl » |
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pubgirl
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Re: I've had three headaches..what can i expect no
« Reply #21 on: Jun 25th, 2004, 7:21pm » |
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Sorry Tory, in answer to your other question.
I get mine by taking my prescription to Boots the Chemists and paying them £6.40.
Wendy
Superpain: Regulator is £120. It is now much easier to get the 02 prescriptions from GP's as it is now in their reference book, the BNF as a standard abortive treatment. Once the initial outlay for the regulator and £5 for 2 good masks is spent (the NHS ones are OK but you can get better ones), it's pretty cheap after that.
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| « Last Edit: Jun 25th, 2004, 7:25pm by pubgirl » |
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don
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Re: I've had three headaches..what can i expect no
« Reply #22 on: Jun 26th, 2004, 12:59am » |
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Oxygen only costs 120 little (L)s ?
Over here we have to pay cash.
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Tory
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Re: I've had three headaches..what can i expect no
« Reply #23 on: Jun 26th, 2004, 4:31am » |
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Thanks, I'll make an apointment next week.
Tory
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pubgirl
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Re: I've had three headaches..what can i expect no
« Reply #24 on: Jun 26th, 2004, 8:04am » |
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Tory
Remember to take all the printed information from OUCh Uk though or they will give you the standard NHS oxygen of 4l per minute, which is useless.
Good luck
Wendy
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