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Topic: Hi - I might be a member of the club! (Read 1118 times) |
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Argonaut
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Hi - I might be a member of the club!
« on: Apr 7th, 2008, 9:08am » |
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Hi everyone,
As the title says, I might be a member of the CH club.
I use the term "might" because I haven't been officially diagnosed as yet, although all the literature I have read about CH resonates with my symptoms!
I've been lurking on the boards for a while and thought I should make myself known.
Bit of history for me - I have been having headaches for a while, and they would always start from behind the eye. I would get bouts of these headaches - during a cycle, headaches would occur every day with pain spiking upwards of four times a day, then I would have a respite for a few weeks before it begins again.
When I do get the headaches, the pain is centred around my right eye and does not spread from that location. My eyelid droops, I get a congested nose and it feels like someone is stabbing me in the eye or wanting to gouge it out...sounding familiar, anyone? 
Being hit daily with KIP 8-9 headaches is very common with me when I'm in the midst of a cycle.
I've had my eyes tested and a CAT scan done, both which came up normal. My GP initially thought they were migraines, which I was never convinced because I do not have other common symptoms of migraines, such as auras. Also, lying down or remaining still does nothing for me because I feel too agitated, but apparently that helps for migraine sufferers.
I have an appointment with a neurologist on the 24th and am wondering what I should tell them. I'm not particularly fussed about what my headache is called [CH or otherwise], as long as I can get some relief.
Some questions though:
a) How is a first visit to the neurologist like?
b) Does anyone else get periods where they have multiple background headaches in between the big attacks? At the moment I'm getting background headaches which are around the KIP 4 range almost all day, every day, followed with bigger spikes of pain. Is that common?
c) How harder is it for females to be diagnosed with CH?
Finally, I'm glad to have found a place where people can relate to my experience. I've been driven to frustration at people dismissing my headaches or not quite believing the amount of pain I experience when one hits.
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| « Last Edit: Apr 7th, 2008, 9:11am by Argonaut » |
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Charlotte
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Re: Hi - I might be a member of the club!
« Reply #1 on: Apr 7th, 2008, 10:09am » |
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[quote author=Argonaut link=board=knowya;num=1207573713;start=0#0 date=04/07/08 at 09:08:33]-I have an appointment with a neurologist on the 24th and am wondering what I should tell them. I'm not particularly fussed about what my headache is called [CH or otherwise], as long as I can get some relief.
...The kind of headache/headaches determine the type of medication tried.
-Does anyone else get periods where they have multiple background headaches in between the big attacks? At the moment I'm getting background headaches which are around the KIP 4 range almost all day, every day, followed with bigger spikes of pain. Is that common?
...This is important to document as there are different simlar headaches and we may have more than one. They are treated with different medications.
...Try to write down one entire series of pain, where it is located, where it moves to, how low and where the pain is, and how fast and how high the pain goes, if some start in the eye, cheek, temple and if some start in back.
...I would also immediately go to the office and request a copy of the neurologist report be mailed to you so you can see what he/she was thinking and what you may need to address is a subsequent visit.
c) How harder is it for females to be diagnosed with CH?
...It's a crap shoot. Even if you get hit while at the neurologist, SUNCT and paroxysmal hemicrania can present themselves very similar to cluster headache. Mention the spikes, as that may be SUNCT. The continuous pain in between may not actually be continuous so you need to carefully analyze that at least once before you get there.
...Put everything in writing that you want the neurologist to know, in case you are getting hit while there.
Good luck.
Charlotte
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Guiseppi
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Re: Hi - I might be a member of the club!
« Reply #2 on: Apr 7th, 2008, 10:24am » |
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Welcome to the club, I hope you're wrong but it sure sounds like you hit it spot on!
Like Charlotte said, keep a detailed diary of your headaches, when they start, how long they last, how fast they build to peak pain, how long the peak lasts, how fast they leave. What you've tried what has and hasn't worked etc. The proof is always in the details.
What you call "background" headaches we refer to as "shadows" I describe it as the claws of the beast trying to get a toehold but not quite digging in!
Your best bet of a correct iagnosis is finding a neuro who knows something about CH. Don't be afraid to "interview" your neuro a bit. A good doc will admit they don't know everything about every damned thing and will refer you to someone who knows something about CH.
If you do have CH, get oxygen. Read the link on the left, used correctly I can abort an attack in les then 10 minutes using oxygen. I'm glad you found us, hope we can help you. Good luck at the neuro, don't be afraid to stand up for yourself! (Girls DO get CH, honest!)
Guiseppi
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Bob_Johnson
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Re: Hi - I might be a member of the club!
« Reply #3 on: Apr 7th, 2008, 10:51am » |
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The cluster quiz (left) and a chart on the OUCH site (which compares major headache types) could be useful. Print both out and use use them to guide your discussion with the doc. That will help keep the focus on the major symptoms.
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AussieBrian
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Re: Hi - I might be a member of the club!
« Reply #4 on: Apr 7th, 2008, 1:04pm » |
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It's all excellent advice you've already received from your new found friends and there's really very little I can add, other than to wish you all the best with your Neuro appointment and to mention that I drink VB.
Please let us know how you get on because we can help in many, many ways.
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CostaRicaKris
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Re: Hi - I might be a member of the club!
« Reply #5 on: Apr 7th, 2008, 10:01pm » |
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on Apr 7th, 2008, 9:08am, Argonaut wrote:c) How harder is it for females to be diagnosed with CH?
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We don't get CH. We're faking it for the cool O2 tanks.
I'm sorry you're in such pain, but I'm glad you're going to a neurologist and doing all the research. It's good to go armed with all the info we can gather. Don't be afraid to print out anything relevant and bring it with you. As Charlotte mentioned - write it down. Keep a headache diary. Good luck and please let us knwo how it goes.
~Kris
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Batch
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Re: Hi - I might be a member of the club
« Reply #6 on: Apr 7th, 2008, 11:41pm » |
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Argonaut,
Welcome to CH.com. Perth... There couldn't be a more beautiful port of call for an old fighter pilot and sea salt like me. I've been there many times and loved each visit like it was yesterday...
Guiseppi/Joe... Perth is a lot like San Diego, but you need to blink twice when you look at the freeway signs , they look the same as they do on I-5, but instead of saying "Oceanside" or "Rancho Bernardo" on the way North, they say Joondalup and Tapping... And... when you head South on I-5, the freeway signs don't say Chula Vista, they say Freemantle. Should you head out to sea to the South West, you'll find Rottnest Island in stead of Los Coronados Islands. Other than that, it looks so much like San Diego, you'll blink twice again. The only real difference is people you'll meet are so much more friendly. The Friday night beer races on the Swann River are a hoot! I had the pleasure of crewing on a 50 footer called Merkin... another hoot...
AussieBrian, you need to get this shiela under wing tut suite!
Argonaut, you've come to the right place... Is there a Jason in the story here?
Take care and hugs,
V/R, Batch
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Argonaut
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Re: Hi - I might be a member of the club!
« Reply #7 on: Apr 8th, 2008, 9:13pm » |
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Hi everyone,
Thanks a lot for everyone's replies and help - much appreciated and it's quite overwhelming!
Apologies for the delay in response, I have not been feeling well. I have been reading the responses but haven't had the concentration to reply. My head has been driving me nuts and I've had to take a day off work today. I feel a nasty one is just around the corner, so I'll spit this post out before it gets too bad 
@Charlotte, Guiseppi and Bob_Johnson: Thanks for all the advice. I will start maintaining a headache diary now; hopefully it will help clarify what sort of headache I have.
I've actually started paying more attention to the duration of my shadows/background headaches, and they don't seem to be constant. Yesterday they lasted around 2-3 hours for most of the day, with a break of an hour or so. I had about 4 hours pain-free in the afternoon before they came back again - but at least that was four hours of no pain  Is that pattern typical of a cluster headache or is it more similar to the other types of headaches Charlotte mentioned?
The chart from the OUCH site is very interesting reading, and it is also very useful to have a comparison table. I've saved a copy.
@AussieBrian: VB is sacrilege! I do have to admit that they make fantastic ads.
Of the Australian beers, my favourites are Gage Roads [a WA beer and my favourite is the malt lager] and James Squire [Porter is my favourite but I also like the Golden and Amber ales].
@CostaRicaKris: I received the same sentiment from my GP when I floated the idea of cluster headaches, because my symptoms would not fit the migraine model and he had no idea what to do with me. He said to me, "You do know that only 5% of females get cluster headaches? So it's very unlikely that you would have it."
I laughed merrily in response and told him to send me to a neurologist
@Batch: Perth is indeed a nice city, and speaking of one of the places you mentioned - I actually live in the vicinity of Joondalup I'm about a ten-minute drive to the beach. Nothing beats being able to jump into my car on a bright morning and be at the beach in a blink of an eye.
There is a Jason in the story, but he is off fighting Talos, the bronzed man
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Barry_T_Coles
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Re: Hi - I might be a member of the club!
« Reply #8 on: Apr 8th, 2008, 10:42pm » |
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Hi Argonaut
Welcome to your new family, another Sandgroper makes it a bit more even we got a lot of them tother sider’s here, I live in Karratha.
Everyone has given you the good drum on how to go about things & I wont elaborate.
If you are looking for a good Nuro in Perth then I recommend my Nuro Professor SASSON GUBBAY, he is experienced in Clusters, here’s his practice details.
Gubbay Dr Sasson
34 Churchill Ave Subiaco 6008
9381 7555
He also lectures in Neurological studies at UWA.
I am going to be near Perth for a couple of weeks as from this Sunday, we have a property near Guilderton & will be staying there, it would be great to catch up but I don’t know if I’ll get the time, send me a PM with your phone number & we’ll see what we can work out, I have arranged to meet up with another cluster head who lives at Yanchep & that’s close enough to my place.
Cheers
Barry
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| « Last Edit: Apr 8th, 2008, 10:43pm by Barry_T_Coles » |
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Brew
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Re: Hi - I might be a member of the club!
« Reply #9 on: Apr 8th, 2008, 11:16pm » |
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I always thought a club was something you joined willingly....
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AussieBrian
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Re: Hi - I might be a member of the club!
« Reply #10 on: Apr 9th, 2008, 2:28am » |
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on Apr 8th, 2008, 11:16pm, brewcrew wrote:| I always thought a club was something you joined willingly.... |
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It can also be a thing with which you're belted over the head.
(PS Argonaut. Top right of your screen it says "Hey, Argonaut, you have X messages". Click on the word 'messages'.)
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Argonaut
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Re: Hi - I might be a member of the club!
« Reply #11 on: Apr 9th, 2008, 6:49am » |
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RANT: After a day of shadows [hitting at around a 4 on the pain scale], I was hit with a 9 in the late afternoon 
I have no effective painkillers, the water method [as mentioned on this site] doesn't seem to work for me and the tablets my GP aren't working either.
I'm feeling quite depressed. This current cycle, I have had headaches every day for the past two weeks and I am quite over it. I wake up with a shadow, I go to bed with a shadow, I get slammed with headaches at least once a day and most nights. My sleep is messed up. Why me?!
Anyways, enough of that.
@Barry: Karratha! How is it out there?
Thanks for the details for your neuro. I already have an appointment made but I will definitely keep your neuro's details. Especially in case the neuro I am visiting gives me a blank look when I mention the prospect of cluster headaches.
@brewcrew and Brian: Here is a tasteless joke for you.
A seal walks into a club.
Hardy hah hah!
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| « Last Edit: Apr 9th, 2008, 6:52am by Argonaut » |
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Brew
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Re: Hi - I might be a member of the club!
« Reply #12 on: Apr 9th, 2008, 8:11am » |
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on Apr 9th, 2008, 6:49am, Argonaut wrote:@brewcrew and Brian: Here is a tasteless joke for you.
A seal walks into a club.
Hardy hah hah! |
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And here's one for you:
An Irishman walks past a bar.
Hey, it could happen.
____________________________
And with Brian's new twist on the word, I think a new title for this thread could be, "Hi - I might be a victim of the club."
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CostaRicaKris
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Re: Hi - I might be a member of the club!
« Reply #13 on: Apr 9th, 2008, 8:28am » |
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on Apr 9th, 2008, 8:11am, brewcrew wrote:
And with Brian's new twist on the word, I think a new title for this thread could be, "Hi - I might be a victim of the club." |
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CH often makes me feel like I've been the victim of a club. Yet, there's never a shiner to show for it.
Argonaut,
Sorry you're having it rough. You're appointment with the neurologist isn't til the 24th of April ? Yikes. Try drinking an energy drink, anything with caffiene and taurine very quickly when you feel it coming on. This really only works for me with shadows, but if you've got nothing else... The water thing didn't work for me either, just made me pee a lot
Hang in there
~Kris
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AussieBrian
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Re: Hi - I might be a member of the club!
« Reply #14 on: Apr 10th, 2008, 4:56am » |
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A seal walks into a club...
An Irishman walks past a bar...
Next you'll be telling me women get CH!!!!
Just to set the record straight, however, kangaroos really do shed their feathers naturally and hop happily onto my barbeque plate.
Just because the emu is the other emblem on our national coat-of-arms doesn't mean it don't make a fabulous feed cooked underground. So long as you're patient because the stuffing (two axe-heads) takes a while to cook through.
Fair dinkum, the sooner ch.com becomes properly a man's place again, with links to Playboy rather than Women's Monthly, the sooner we'll find the cure.
During the meanwhile, I feel it only fair that the ladies are allowed to bring on the coffee at half-time.
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CostaRicaKris
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Re: Hi - I might be a member of the club!
« Reply #15 on: Apr 10th, 2008, 7:02am » |
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ROFL
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Barry_T_Coles
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Re: Hi - I might be a member of the club!
« Reply #16 on: Apr 10th, 2008, 7:33am » |
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Brian TWFF
Is there any truth to the rumor that you & Brew where congenital twins & are working incognito just to confuse the shit out of us?
Love 
Barry
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Argonaut
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Re: Hi - I might be a member of the club!
« Reply #17 on: Apr 10th, 2008, 7:51am » |
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on Apr 9th, 2008, 8:28am, CostaRicaKris wrote:
Argonaut,
Sorry you're having it rough. You're appointment with the neurologist isn't til the 24th of April ? Yikes. Try drinking an energy drink, anything with caffiene and taurine very quickly when you feel it coming on. This really only works for me with shadows, but if you've got nothing else... The water thing didn't work for me either, just made me pee a lot
Hang in there
~Kris
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Thanks Kris - I will try slamming down those energy drinks. I've currently been slamming down the coffees but maybe they don't deliver as much of the caffeine as it's required, nor at the pace required.
The water method did the same for me!
I went to work today with a size 8 headache slamming me - it was interesting but at least I survived, and I didn't make a public spectacle of myself
@Brian: I had one of those pesky blue-tongues try to drink my beer the other day!
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Jzero
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Re: Hi - I might be a member of the club!
« Reply #18 on: Apr 10th, 2008, 1:19pm » |
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You're very brave going to work with such pain - I really feel for you. I used to do that once, but can't anymore.
I joined this family too (a couple of weeks ago) and as of yesterday I think (I hope) I've reached the tail of this attack. Oxygen has been the nicest abortive I've used, however I find dihydroergotamine injections are very good and very effective most of the time - as long as I can inject at the first sign of an attack. Fortunately I've been able to self inject at home for many years now.
If you still cannot find anything to give you relief it would be worth a try. You'll need to ask your dr or neurologist to show you how to inject safely. It's best injected into an area of the thigh muscle if doing it yourself or the buttock if you have someone who can do it for you.
There are only 5 vials per normal script, but you can get an authority script for 15 with 2 repeats - which is much better and more convenient because 5 vials is only enough for 5 days.
A needle might sound nasty, but it's not really bad once you gain confidence and it's far far better than the Cluster!
Best of all tho' is what most here recommend which is oxygen - it's much much easier and safer, but you need a lot of it and you can run out very quickly.
I get mine free through the hospital, which is really wonderful. It's worth inquiring about that over your way. The oxygen is supplied by 'Air Liquide' which supplies Australia wide.
Warm thoughts and 'get better very very soon' wishes, from Jzero
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Argonaut
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Re: Hi - I might be a member of the club!
« Reply #19 on: Apr 11th, 2008, 7:49am » |
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@Jzero: Thanks for the tips and well-wishes. I think I more foolish than brave for going to work, especially when my headache reached a crescendo while I was required to give my colleagues a quick tutorial on a new program
Interesting about the needles - I will look into that more as well.
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Batch
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Re: Hi - I might be a member of the club!
« Reply #20 on: Apr 11th, 2008, 12:19pm » |
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Oxygen therapy?
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You love lots of things if you live around them. But there isn't any woman and there isn't any horse, not any before nor after, that’s as lovely as a great airplane. Man has one virginity to lose in fighters, and if it is a lovely airplane he loses it to, there is where his heart will forever be.
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Argonaut
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Re: Hi - I might be a member of the club!
« Reply #21 on: Apr 14th, 2008, 12:17am » |
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@Batch: I am seriously considering exploring that option, but I wonder how hard it is to get oxygen without a prescription in Australia?
Anyways, I am off to see my GP today. I saw him on the weekend as well and I have a feeling he keeps downplaying my pain. I think it's mainly because I'm fairly stoic and I won't thrash about or scream no matter how much pain I'm in - the most I would do is bang my head.
He was saying that my headaches are a mix of tension and migraine headaches  Makes me wonder if he is misunderstanding me, or if I'm the one exaggerating how I feel?
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AussieBrian
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Re: Hi - I might be a member of the club!
« Reply #22 on: Apr 14th, 2008, 10:25am » |
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on Apr 14th, 2008, 12:17am, Argonaut wrote:| @Batch: I am seriously considering exploring that option, but I wonder how hard it is to get oxygen without a prescription in Australia? |
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Here ya go, Argonaut, care of Mad Barry who passes water in Karatha along with his parole officer, the lovely Mr Happy.
http://mushys.com/kiwi
We're ever here to help and for only a small extra charge will throw in a free set of steak knives.
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Jzero
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Re: Hi - I might be a member of the club!
« Reply #23 on: Apr 14th, 2008, 1:01pm » |
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Hi Argonaut,
just to say that I needed to make an appointment to see the head of the respiratory department at the hospital in order to get my oxygen. I was then put on their patient register and can phone 'air liquide' (ph: 1300 360202) now as a permanent patient.
The staff of air liquide might have an idea who you have to see over there if you get stuck, but I recommend you try through the hospital first. Explain that you need a large tank (an 'E' size - 4300 Litres, is what they give me, their largest is a 'G' size - 9200 Litres). You also need a regulator that allows for a 15 LPM flow rate, their standard ones only go up to 5 or 6 which isn't worth the trouble. And, If they supply it, ask for a non-rebreather mask. If they give you a standard mask, place some tape (I use electrical tape) on the inside to cover the holes there and on the tubing that connects to the mask on the outside.
I'm finally getting a non rebreather mask next week
I was lucky one day during a cluster, I went to Emergency in a bad way and was put on oxygen there. A male nurse told me he knew a guy in Melbourne who got Oxygen for free through the hospital there for Cluster Headaches. He encouraged me to inquire when I was more able, so I followed through on his advice and have had it freely available for the last five years now.
I sure hope they listen and that you'll be writing really
soon to let us know of your success in getting it (hopefully too, the respiratory department will be aware of Oxygen Therapy for Cluster Headache patients).
Jzero.
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CostaRicaKris
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Re: Hi - I might be a member of the club!
« Reply #24 on: Apr 14th, 2008, 8:59pm » |
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on Apr 14th, 2008, 12:17am, Argonaut wrote:
Anyways, I am off to see my GP today. I saw him on the weekend as well and I have a feeling he keeps downplaying my pain. I think it's mainly because I'm fairly stoic and I won't thrash about or scream no matter how much pain I'm in - the most I would do is bang my head.
He was saying that my headaches are a mix of tension and migraine headaches Makes me wonder if he is misunderstanding me, or if I'm the one exaggerating how I feel? |
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Funny... I thrash around, but don't bang my head
It's not how you react to the pain that matters, but your symptoms. While I'm not a Dr., what you describe in your initial post certainly sounds like Ch to me. I hope your neurologist is better informed then your GP.
PF wishes
~Kris
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| « Last Edit: Apr 14th, 2008, 8:59pm by CostaRicaKris » |
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