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caoimhin
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A rookie looking for answers
« on: Jan 26th, 2008, 1:04pm » |
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Hi everyone
I'm 22 and have never suffered from headaches apart from some mild eye strain. Im new to both CH and message boards so bare with me and see wat you think of my tale.
The story so far.
I started getting pretty severe headaches above and behind my right eye in mid Dec. The first thing i done was go to my optician, i had a full eye exame and apart from needing slightly stronger glasses everything checked out great. So i decided to see my doctor. I was diagnosed with migrane and given some Zomig but she wouldnt giv me anything for the pain despite my pleas . Over the space of a week the headaches had been increasing in severity and frequency despite the Zomig, to the point that i couldnt work, I couldnt go for a drink (for an Irish person thats pretty serious) my life was basically put on hold. When they struck (every day now) they hit hard. I would course everything from doctors to god. After they reached there full intensity all i could do was beg for it to stop and usually after a half an hour I'd break and start crying. Though the pain waranted it I managed not to scream only because of the effect all this was having on my family and friends (just recalling it all is bringing tears to my eyes). One night after a severe attack left me physically and mentally broken i went to the hospital to try and get myself committed. I was told that it could be cluster headches and to go back to my doctor, for the pain i was given Codeine Phosphate with Paracetamol and told to take 2 at the first sign of a headache. I cant say they gave me any real releif from the pain but i was glad jus to hav someone take me seriously. So back to the doctor i went and this time was kitted out with some Amitriptyline (a TCA) and Voltarol (a NSAID) along with more Zomig and Codeine. After a few days i noticed that the headaches no longer reached the same degree of pain but had doubled in length. I finally felt like i could cope with the pain for the first time in a while and began doing some research of my own on the internet. Thats when I found you guys. I read a few strories and got quite emotional i.e. I cried a lot, not jus because of the similarities but also at jus how severe some people are effected by this condition. Armed with the new drugs and a few tips i picked up from the website (i found the extra strong cup of coffee as well as the water binge technique affective the headaches died away and my life went back to normal. That brings my up to date, I'm waiting to see a specialist at the moment but its been nearly a week since my last attack. Ive spent a small fortune on over the counter pain killers and persciption drugs but hopefully im out of the woods now.
My nemises.
They started out once every day or two, usually round the same time. I'd get a stabbing pain above and behind the right eye. They took about 15-30 mins to fully kick in and would last between 1hr 1/2 to 2hrs. At this stage I'd say about a 5 out 10 for pain They progressively got worse untill it was twice a day every day the same length but by now they'd reached 8 - 9 out of 10. The pain seemed to be coming from 2 places now. The stabbing behind my eye but also pain that i can only descibe as someone taking a blow torch to the side of my head just above and behind the temple. I did get some slight swelling around the right eye but it was more a feeling of pressure than anything visible. I was usually left very red in the face after but i cant really describe how i looked during because no one could bare to see my in that sort of pain. They would strike around the same times but it did vary.
The Drugs
Ive went in to the drugs breifly but thought a more detailed description would be better. Anything i could buy over the counter didnt seem to have any affect on the pain. Codeine Phosphate gave some light relief but only when taken in high doses (60mg). Not to sure about the effectiveness of the Voltarol (50mg) but after a few days of the amitriptyline (30mg per day) i noticed a reduction in pain but increase in length. The Zomig never seemed to abort the beast but a really strong cup of coffee plus several pints of water worked on several occasions.
My questions
Do I have clusterheadaches? Is this probably going to happin again? Do they always come in cycles? Is Oxygen a must have? Do any of your Uk members know if Oxygen is available on the NHS?
Well thanks for reading all of this, I did go on for a bit but I felt like a had a lot get off my chest. Oh yeah and it really giv me a boust when i found the website, it really kept my going when i was feeling at my lowest.
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RichardN
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Re: A rookie looking for answers
« Reply #1 on: Jan 26th, 2008, 1:22pm » |
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Hello and Welcome
Before long, Helen (LeLimey) will be along to aid you in getting you 02 . . . a real miracle for those of us it works for (70%) to abort. She is most familiar with the UK medical system and knows all the buttons to push and documents that need to be filed.
If it's CH . . . sorry, but yes it's going to happen again. Cycles vary wildly, with some getting hit a few weeks to a few months every year, and some having remissions that may last a few years . . . to chronics (pretty much constant) . . . AND . . . the beast can change-up just when you think you have his schedule figured out.
Hope you don't have CH ( sounds like it), but if you do, you're in the right place. This place gave me my life back and I don't fear the beast at the level I once did.
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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thebbz
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Re: A rookie looking for answers
« Reply #2 on: Jan 26th, 2008, 2:16pm » |
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If you have CH forget the pain killers, they are useless on the demon. Get the 02.
welcome and all the best
thebb
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imfareware
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Re: A rookie looking for answers
« Reply #3 on: Jan 26th, 2008, 9:06pm » |
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Like the previous advise, pills wont work. I became a lover of Lortabs, they didnt do anything for the pain, but after my cycle I would use them for recreational purposes.
O2 helped me through this and an over the counter pill called Melatonin. This cycle has been really nothing compared to what I usually get. Is it the O2? The Melatonin? I dont know, but they both helped me.
Just like this site. You hang in there. The pain is gone soon!!
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Pain is temporary, Love is Permanent
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Bob_Johnson
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Re: A rookie looking for answers
« Reply #4 on: Jan 27th, 2008, 9:38am » |
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If you are restricted in your choice of physicians then you will have to educate the one you have. Clearly, this doc does not know about clusters!
Print out both of these articles and give to him and hope that his ego will allow you to educate him. At the very least, you can use to Rozen article to push a discussion of your optons.
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HERE ARE TWO MAJOR DOCUMENTS WITH RECOMMENDED TREATMENTS FOR CLUSTER HEADACHE, ONE FROM A U.S. PHYSICIAN, THE SECOND FROM EUROPE.
_________________________________________
http://www.plainboard.com/ch/chtherapy.pdf
Here is a link to read and print and take to your doctor. It describes preventive, transitional, abortive and surgical treatments for CH. Written by one of the better headache docs in the U.S. (2002. Rozen)
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Treatment guidelines from Europe
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A. May, M. Leone, J. Áfra, M. Linde, P. S. Sándor, S. Evers, P. J. Goadsby:
EFNS guidelines on the treatment of cluster headache and other
trigeminalautonomic cephalalgias.
European Journal of Neurology. 2006; 13: 1066–1077.
Download free full text:
http://www.efns.org/files/guideline_49.pdf
(Thanks to "cluster" for link.)
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Bob Johnson
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LeLimey
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Re: A rookie looking for answers
« Reply #5 on: Jan 29th, 2008, 6:53am » |
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Hello I'm sorry I'm late to the party, I don't know how I missed you 'cos I look out for Brit's 
Anyway, O2 IS available on the NHS and it's a heck of a lot cheaper than triptans!
Your doctor needs to fill in a form called a HOOF. That's a home oxygen order form.
He needs to say 15 LPM with a non rebreather mask and to tick the box for ambulatory Oxygen so that you can get smaller portable cylinders as well as the big ones for at home.
If he writes Cluster headaches in the comments box that will help alot too.
He can fax it to your local supplier (Either Air Products or BOC whoever has the contract for your area) and once you are on their system (24 hours) you can ring and order it.
They deliver the cylinders, masks etc to your house and show you how it is all set up.
All tanks now come with integral regulators too so you don't need a separate one of those.
If it's not clear or you need help please shout, I'll keep checking back to see how you are doing now that I know you're here! (Thanks for the headsup Richard)
Regards
Helen
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ronan76
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Re: A rookie looking for answers
« Reply #6 on: Jan 29th, 2008, 10:57am » |
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on Jan 26th, 2008, 1:22pm, RichardN wrote: Hello and Welcome
Before long, Helen (LeLimey) will be along to aid you in getting you 02 . . . a real miracle for those of us it works for (70%) to abort. She is most familiar with the UK medical system and knows all the buttons to push and documents that need to be filed.
If it's CH . . . sorry, but yes it's going to happen again. Cycles vary wildly, with some getting hit a few weeks to a few months every year, and some having remissions that may last a few years . . . to chronics (pretty much constant) . . . AND . . . the beast can change-up just when you think you have his schedule figured out.
Hope you don't have CH ( sounds like it), but if you do, you're in the right place. This place gave me my life back and I don't fear the beast at the level I once did.
Be Safe, PFDANs
Richard |
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Hi Richard,
how can you be sure that "it's going to happen again" ?
Just wondering as i'd like to read where it's medically proven that they will always return.. it seems to me that very little is known about CH.. however something as simple as a drinking a can of redbull can abort an attack for some sufferers..... however i understand this may not be the case for a lot of people ..in particular the chronic sufferers.. i can only speak from my own experience..
for instance i had CH for about a month 8 years ago and at the time wasn't told they would come back (i wasn't aware of this site at the time).. OK so they did.. but 8 years later... that is longer remission that any of the websites say... so who says its not possible that they wont come back ? Perhaps they are stress related or related to your lifestyle.. and a change in lifestyle may lead to them not coming back... i dont know... but whos to say its not possible for some people?
all i'm saying is that there is no medical proof (correct me if i'm wrong please)
caoimhin i can contact you directly on email if you want.. are you based in Dublin ? .
ronan
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Guiseppi
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Re: A rookie looking for answers
« Reply #7 on: Jan 29th, 2008, 11:09am » |
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That's one of the most frustrating things about CH, the not knowing. For some, they stop and never come back. Some have remissions that last for several years, then they come back. I finished my longest remission, almost 2 years, followed by my longest ever cycle, 8 months!!
For me, I find it easiest to accept they will ALWAYS come back again. I don't waste energy worrying about that fact, I don't allow it to negatively effect my life with excess worry, I just accept that they will come back. That way, each time he returns, I'm ready to do battle.
It's a mind set which never allows me to be caught by suprise, just what works for me! Because you are right, there is a LOT medicine hasn't figured out yet about our condition!
Pain fre days at you!
Guiseppi
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RichardN
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Re: A rookie looking for answers
« Reply #8 on: Jan 29th, 2008, 12:00pm » |
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Ronan
I'll accept your criticism of my statement . . . . would have been kinder perhaps to say, " it's PROBABLY going to happen again".
I am definitely not a doctor, nor do I possess the mental facility to retain all the medical info that so many here do. My statement was mostly based on experiences of others here who have had this condition for decades and the "pros" that collect and maintain/offer all known info re CH.
The one thing we do know is there is no known, recognized "cure" for CH . . . .so . . . it's "probably" going to happen again.
We are all heartened by reports of folks having their cycles ended by Kudzu or alternative methods, and hope and pray those remissions are permanent . . . . but for most of us, all we can do is be prepared for his next visit.
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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LeLimey
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Re: A rookie looking for answers
« Reply #9 on: Jan 29th, 2008, 12:14pm » |
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I know of one person for whom they came back after 26 years remission - REMISSION being the key word. You are never cured - you're just in remission.
So when you have it make the most of it!!! 
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ronan76
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Re: A rookie looking for answers
« Reply #10 on: Jan 29th, 2008, 12:22pm » |
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on Jan 29th, 2008, 12:00pm, RichardN wrote: Ronan
I'll accept your criticism of my statement . . . . would have been kinder perhaps to say, " it's PROBABLY going to happen again".
I am definitely not a doctor, nor do I possess the mental facility to retain all the medical info that so many here do. My statement was mostly based on experiences of others here who have had this condition for decades and the "pros" that collect and maintain/offer all known info re CH.
The one thing we do know is there is no known, recognized "cure" for CH . . . .so . . . it's "probably" going to happen again.
We are all heartened by reports of folks having their cycles ended by Kudzu or alternative methods, and hope and pray those remissions are permanent . . . . but for most of us, all we can do is be prepared for his next visit.
Be Safe, PFDANs
Richard |
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Thanks Richard.. i'm "mouthing off" a bit today.. i hope i didn't sound aggressive with my message as i didn't mean too..
I agree by the looks of it, it will come back at some stage..
however i'll live in hope ...
Many pain free days to you too...
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thomas
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Re: A rookie looking for answers
« Reply #11 on: Jan 29th, 2008, 1:30pm » |
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on Jan 29th, 2008, 12:14pm, LeLimey wrote:I know of one person for whom they came back after 26 years remission - REMISSION being the key word. You are never cured - you're just in remission.
So when you have it make the most of it!!! |
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I can't imagine the horror. Six and twenty years of pain free bliss only to have it return........ I would be devastated. 
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Religion and sex are powerplays. Manipulate the people for the money they pay. Selling skin, selling God, the numbers look the same on their credit cards. Triptans cause rebounds. Learn it, believe it, live it. I use triptans as the absolute LAST RESORT when treating my CH.
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caoimhin
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Re: A rookie looking for answers
« Reply #12 on: Feb 5th, 2008, 10:13pm » |
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Thanks for the info and emails guys I really appreciate it. Its been a cuple of weeks now with no headaches!! Definitely gonna get me some O2 so if the beast tries to pick another fight, this time ill be ready.
Oh yeah and a big thanks to the legends that put this site together, cant thank ya's enough.
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