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Topic: Newbie......Needs help !! (Read 348 times) |
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Ian_UK
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Hi everyone, I'm a newbie to this board, but, I'm afraid, not a newbie to this awful plague. It's great to see somewhere I can come to to swap experiences, and, I hope, obtain and give support to fellow sufferors.
I've had these headaches on and off for 15 years, they come and go. I have been attack free for about 9 months, until last week, when I started having them every single night.
I feel fine during the day, and can normally go to sleep fine, only to be awoken with a droopy, streaming eye, and a pain that is beyond belief. I have tried Ibuprofen, Codydramol, asprin etc, all without effect, and I have found the only relief to be when taking Tramadol, which is only available under prescription here in the UK, however, no GP seems to take these attacks seriously, so it's hard to get hold of this relief. Like everyone on here, I'm sure, these attacks make my life a total misery, and also my partners, as I am unable to sleep, and spend hours walking around, pulling my hair out at the pain. Eventually, I can sleep, but wake the next day feeling like a total zombie.
Any advice on alternative methods of relief would be welcome, as I am at my wits end at present....
Take care everyone, and I look forward to comtributing to this board whenever I can.
Thanks,
Ian
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Cooked Brain
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Re: Newbie......Needs help !!
« Reply #1 on: Aug 18th, 2003, 5:02am » |
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Dear Ian,
to bad you have to be here, but good that you are... Welcome to the board. Sorry that you suffer too from CH. I am sure you will find all the info you need on any therapy here, it may take some time to read it all, but it's all there...
try going or calling your GP during an attack, his attitude will change instantly. Becoming really mad and p#ssed at him may help too. You should see a neurologist to start trying preventative meds (verapamil, prednisone) but to immediately do something about the pain I would recommend Relpax (eletriptan). 20 mg should be enough to kill your severe attacks at night. Be careful not to take them for the minor ones though as the effect may decline. If it doesn't work or if the drugs give you too many side effects try 100% oxygen, but also for this goes: be careful, as you can get respiratory problems if you you it too often for a longer period of time. Hope you will get to see a dedicated neuro who takes your condition seriously. Keep us posted!
Best and PFDAN
painfull murazza
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"We can NOT solve our problems with the same kind of thinking that got us IN to the problem in the first place" Albert Einstein
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badfly
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Re: Newbie......Needs help !!
« Reply #2 on: Aug 18th, 2003, 7:08am » |
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Sorry you are havin a hard time of it Ian.
The best thing you can do is take control of this beast! Find a GP who will take you seriously, or better yet find a neuro. There is a section on this site where you can look up good doctors in your area, I forget where it is ??? (can someone please help me here?) Demand DECENT medical treatment and you will see an improvement in your life. Also read all you can in this site and learn about all the meds and dosage. Forget about asprin and conventional pain killers, they wont help and they will eventually harm you. I use Imetrex Injections and have gotta say besides the O2 its the best abortive I have tried.
Wishing you PFDN !!
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for (int i=0;i<infinity;i++)
{Shout("Get this BEAST off my back !!!");}
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zanychef
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Re: Newbie......Needs help !!
« Reply #3 on: Aug 18th, 2003, 7:17am » |
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hi ian
sorry to hear the beast is back  this site has helped me get through the worst of my days find the information here take it to your gp and show him
you can always talk to me fone 07949 570493
i'm in th uk so it won't cost the earth
wishing you pfdan ;D
ian(zany) ;D
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plenty of time to sleep now me headaches aint too bad
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cootie
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Re: Newbie......Needs help !!
« Reply #4 on: Aug 18th, 2003, 8:35am » |
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Hey Ian.......am sure you'll get wuite a few tips on here what ya can do or try.......I think most meds carry side effects.......I'm a supporter but am the side effects queen when it comes to meds. Hang in there....you'll be alright. Pam that gets side effects from water
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Cause and Effect......"Cause is the effect concealed, Effect is the cause revealed"
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ksmiggy
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Re: Newbie......Needs help !!
« Reply #5 on: Aug 18th, 2003, 4:49pm » |
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hi Ian,
newish here too, you gotta push your gp for a referal to local hospital, there you will find your saviour(p'haps a bit too optimistic), ibuprofen seems to have no effect on CH, my weapon of choice is kapake(500mg paracetamol, 30mg codiene) 1 or 2 at first sign of attack, immigran injection for when that fails, both avail from gp in uk. might be worth a try, better than ibuprofen or asprin. AS fo going to GP during attack(murazzio below), very good idea, but beware, mine just looked at my eye and started muttering conjuntivitis, nearly through him out window, told him look again, changed his mind
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ClusterChuck
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Re: Newbie......Needs help !!
« Reply #6 on: Aug 18th, 2003, 5:09pm » |
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Sorry you have to be here, but welcome aboard!
I think the message that is being sent to you is, don't just live with them! Learn from this site and O.U.C.H. Do not accept being brushed off by your GP. Bring some of this info in to him. If no results, go elsewhere. A neurologist is the best in my mind, but you can get boneheads there also.
But remember, you are not alone in this! You CAN survive it! You ARE strong enough! Use this site to vent, question, or just read others comments. This is the only place you will find so many people that will know EXACTLY what you are going thru. We will not throw that most hated comment at you: Oh, it's just a headache ...
And, if you are a beleiver, prayer helps too.
Welcome aboard again, and hope you get a break ffrom this SOON!
Chuck
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Cooked Brain
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Re: Newbie......Needs help !!
« Reply #7 on: Aug 18th, 2003, 5:22pm » |
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on Aug 18th, 2003, 4:49pm, ksmiggy wrote:| AS fo going to GP during attack |
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I told my Gp years ago i was getting this inexplicable headaches every now and then, he gave me the half eyebrow look: "can be stress or fatigue". ever since june this first real bad cycle started, never had three, four attacks per day. One morning it got so bad my mother took me to the GP. As I went in crying and pulling my hair he saw it. And believe me, he used BOTH his eyes very well this time 
Pooring eye drooping nose, diagnose took about two minutes from there luckily...
Dont just let off easily Ian, you have the right to treatment, hang in there!
PFDAN
painfull Murazza
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"We can NOT solve our problems with the same kind of thinking that got us IN to the problem in the first place" Albert Einstein
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STABBINGPAIN
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Re: Newbie......Needs help !!
« Reply #8 on: Aug 18th, 2003, 5:26pm » |
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GREETINGS IAN,
YOU'LL FIND SO MANY WONDERFULL PEOPLE HERE TO HELP. GREAT INFO AND JUST ABOUT EVERYTHING ELSE AND MOST OF ALL 100% SUPPORT . THATS THE BEST PART. I 'VE BEEN A NEWBIE FOR A WEEK AND FOUND OUT SO MUCH STUFF. HOPE YOU'LL ENJOY YOUR STAY WITH US.
KAREN/STABBINGPAIN  [color=Pink][/color]
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jonny
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Re: Newbie......Needs help !!
« Reply #9 on: Aug 18th, 2003, 5:31pm » |
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Please SHUT OFF THE CAPS!!!!
Thank you ;D
..............................jonny
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Cooked Brain
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Re: Newbie......Needs help !!
« Reply #10 on: Aug 18th, 2003, 5:31pm » |
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KAREN
check your inbox 
PFDAN
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Charlie
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Re: Newbie......Needs help !!
« Reply #11 on: Aug 18th, 2003, 8:44pm » |
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Welcome aboard Ian. Sad to have to welcome another sufferer but there are lots of good ideas here. Here are two links. The first being Simon's letter that will help your doctor understand that you know what you're talking about and the second is my post of Dr. Wright's circulatory technique. It's non invasive and costs nothing. Take a look.
http://www.ouch-uk.org/ch/note_colleagues.cfm
http://www.netsync.net/users/charlies/
Keep in touch.
Charlie
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Hooter
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Re: Newbie......Needs help !!
« Reply #12 on: Aug 18th, 2003, 11:52pm » |
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Ian
This site is great, but for the UK information on getting the right treatment via the NHS, the OUCH UK site is invaluable. There is a message board also where you can talk to people in the same position with their GP's and also a 'where we live' section which can put you in touch with other sufferers who live near you. Many of the drugs available in the US have different names in the UK, or do not exist but the main treatments of choice are the same drugs in both countries , and many GP's are getting better clued up now (Imigran, 02, Verapimil etc)
The link you need is: www.clusterheadaches.org.uk
Wendy the Brit
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Patrick_A
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Re: Newbie......Needs help !!
« Reply #13 on: Aug 19th, 2003, 12:06am » |
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Yea, what they said! Except Jonny, He dont like being yelled at!!
Patrick
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ksmiggy
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Re: Newbie......Needs help !!
« Reply #14 on: Aug 19th, 2003, 7:21am » |
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Have to agree with jonny about the caps(stabbingpain), its just sadism, coming on to a site for headache sufferers and SHOUTING 
I read it 3 times, am i a masochist ???
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| « Last Edit: Aug 19th, 2003, 7:47am by ksmiggy » |
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daveengland
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Re: Newbie......Needs help !!
« Reply #15 on: Aug 19th, 2003, 4:30pm » |
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ian
so sorry that you're suffering,you're not alone.
my GP was prepared to try me on IMIGRAN injections and 02.if they worked she would prescribe more.they did and so did she.i get small 02 bottles with a built in regulator,called a 400litre PD lite.i haven't tried preventatives'am waiting to see a neuro,but after hell for three and a half years,the last three months have been a bit more bearable.
a word of advice-i ate ibuprofen(nurofen+)like sweets all that time,i now have a stomach ulcer-don't take them they eon't touch the pain
take care,
wishing you endlessPFDAN's
dave,
suffolk,england
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Cooked Brain
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Re: Newbie......Needs help !!
« Reply #16 on: Aug 19th, 2003, 4:49pm » |
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Quote:| a word of advice-i ate ibuprofen(nurofen+)like sweets all that time,i now have a stomach ulcer-don't take them they eon't touch the pain |
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that's a bummer dave
I tried those too, but no more than 4 a day, it made a bit dizzy but didn't do anything against the pain. Thank God for Relpax 
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"We can NOT solve our problems with the same kind of thinking that got us IN to the problem in the first place" Albert Einstein
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daveengland
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Re: Newbie......Needs help !!
« Reply #17 on: Aug 19th, 2003, 5:03pm » |
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since i found out whay CH was,and that painkillers(normally made no difference,i haven't taken a thing.no codeine,no buprenorphine(patches or injections),no ibuprofen
imigran when its bad,or getting worse
and i have to agree with jonny,
O2 is cooool! ;D ;D
hate it when the dial goes from red to green tho
PFDAN's to all
dave
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Cooked Brain
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Re: Newbie......Needs help !!
« Reply #18 on: Aug 20th, 2003, 10:24am » |
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so where are you at IAN??
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"We can NOT solve our problems with the same kind of thinking that got us IN to the problem in the first place" Albert Einstein
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