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Topic: a wandering story from down under... (Read 467 times) |
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benj
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a wandering story from down under...
« on: Jan 20th, 2004, 9:52am » |
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well, where to start?
I got my first bout at the age of fifteen (although at that stage people thought I had something different - we are talking 1989!). Even having a neurologist uncle wasn't any help, I guess at that stage they just didn't know.
I got lucky. Not another patch until 1994, although by that stage I was a qualified submariner onboard Australian submarine HMAS Ovens - and as you can imagine that didn't go together so well - so I was landed, permenantly (there goes that career...) At least the Navy doc knew exactly what they were and prescribed Imigran straight away. PS - thank christ for that stuff.
The fucked thing about the Navy was that nobody (outside the doctor) believed me - they all thought I was trying to get ashore or something - and so I was pressured out of my beloved submarine arm like a leper. To this day none of my former colleagues keeps in touch. I guess that sort of thing proves the worth of a site such as this one - there are others out there...
So when I left the Navy I went to Uni, where the pain continued (although the free medical didn't) and I ended up working two jobs just so that when a cluster came I was financial enough to cover the Imigram. At least the nasal spray is covered by the oz Pharmaceutical Benefits Scheme (PBS) - that makes the nasal spray about $20 - infinitely more affordable that the $140 injections. Although at this point I'd like to say that the nasal sprays suck. Whilst getting rid of the pain 75% of the time (GOOD!), they make me gag 100% of the time (SHIT!)- does anyone else go through the gagging, need some STRONG cordial routine as well?
Now I've finished Uni and looking for a job in my new home, Melbourne (a beautiful city - if anyone ever gets the chance...), so enough about that.
Normally my clusters are up to two months long with attacks coming every two-three days, although I am currently undergoing the worst one of my life (four months so far - attacks now coming two-three a day). One of the worst things about moving was having to re-explain to a GP that I needed Imigran. The new doctor I just went to had to look up cluster headaches in her medical textbook! 
When I asked if I could read what the "experts" had to say on the subject it said that clusters were related to the "circadian rhythms of the body" (possible) and that they came like clockwork everyday (only sometimes) and that the best cure was to set your alarm for an hour before each attack - if in the middle of the night - so as to take preventative tablets!!! I can't speak for any of you, but I know that my bane doesn't come at the same time everyday!!!
To add insult to injury she wouldn't perscribe any repeats as she didn't know me!!!! like you'd take this stuff voluntarily??
Sorry, it sounds as if I'm whinging - I guess I am - its just that I'm at the end of my tether.
Finding this website and being able to talk to people who know the pain is a godsend. I've never met another sufferer in my life and I'm just so sick of trying to explain to people that it's just not a 'normal' migraine, and being cherry and thankful to all those "helpful" family and friends who give suggestions as to what I'm doing wrong - who have no fucking idea what the hell you're going through.
well it's nearly 2am here (although I don't want to fall asleep as I'm petrified of yet another headache-sleep-trance). At least I've got an appointment with another Neurologist soon. If anything has changed in the way of treatments I'll be sure to let everyone know.
thanks for listening
Benj
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echo
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Re: a wandering story from down under...
« Reply #1 on: Jan 20th, 2004, 9:58am » |
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End of your tether -- I've been there too.
Having to deal with idiot military doctors -- I can relate to that also.
Nasal sprays that make you want to puke -- yep.
Afraid to sleep -- We have that in common also.
Hope that the upcoming appointment with your neuro is a positive one, and you come away with a preventative med combo that will keep the beast at bay.
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"If you love something, let it go. If it doesn't come back, hunt it down and kill it".
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Prense
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Re: a wandering story from down under...
« Reply #2 on: Jan 20th, 2004, 10:09am » |
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Welcome aboard Benj!
You might find that O2 is cheaper than the imigran. Check out the O2 info link on the left.
Also, I didn't see any mention of preventative meds. It has been my experience that docs want to start looking for prevents (combos) that work, and often forget about any abortives. This was just the opposite of what I wanted when I first saw a doc. I wanted relief, and I wanted it without waiting! However, prevents just make sense...
Since you are episodic, that doesn't give you an indefinate amount of time to find a prevent that works for you. Start finding something now so that you will be able to battle future episodes effectively!
Hang in there and keep us posted please!
Chris
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brad267
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Re: a wandering story from down under...
« Reply #3 on: Jan 20th, 2004, 10:19am » |
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Hmmmm,
If we show up with a large supply of Imigran/Imitrex, can we crash at your place and have a really cool vacation in Australia??? (Just Kidding)
Sounds like a very similar story, and a top reason this message board is here, in my opinion. We understand, sympathize, and empathize...
IMHO, finding the best neuro possible, is of utmost importance!!!
Hope all goes well,
Brad
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benj
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Re: a wandering story from down under...
« Reply #4 on: Jan 20th, 2004, 10:22am » |
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yeah thanks Chris,
I've been reading some info on the O2 thing - looks like a winner for some people. No info on availability in Oz though. (My GP didn't know about it either - the old GOOD GP!, no the new CRAP GP!)
If anyone knows availability info, costings etc for O2 therapy I'd be appreciative.
Also, anyone know of long term side effects from Imigran? I mean apart from your nose packing up and leaving you for a better head....
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Prense
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Re: a wandering story from down under...
« Reply #5 on: Jan 20th, 2004, 10:41am » |
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on Jan 20th, 2004, 10:22am, benj wrote:| No info on availability in Oz though. |
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I don't know much about where you are from, but you should be able to contact medical supply places that would deliver the O2 or where you would pick it up assuming you had a prescription. They would be able to give you the cost figures. For me, in the US, it costs me $60 a month regardless of how many tanks I go through.
Also, you can check into welder's O2...same stuff if it is procurable over there although I believe you would need a different type of regulator.
Chris
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Patrick_A
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Re: a wandering story from down under...
« Reply #6 on: Jan 20th, 2004, 5:05pm » |
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Yo Benj, I just got back from Oz last year. I spent 12 glorious days in Melbourne and surrounding places. I have a great friend who sells Real Estate there.
Anyways....My last episode of CH started back in June, My Neuro put me on a 60mg Prednisone taper and 120mgs Verapamil 2 times a day. That stopped my CH's in their tracks. I have been pain free since early September.
I personaly like the nasal sprays. It is a bit nasty going down but they work for me 95% of the time. Imitrex has a tendency for me to give me more CH's and more painful ones too. I heasr oxygen is great, but i have never tried it.
Good luck, Patrick 
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thomas
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Re: a wandering story from down under...
« Reply #7 on: Jan 20th, 2004, 5:52pm » |
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Welcome aboard.......... hope you get some relief......
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t_h_b
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Re: a wandering story from down under...
« Reply #8 on: Jan 20th, 2004, 6:15pm » |
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Try melatonin if you can get it, starting off with a small dose (0.5mg) and increasing it until you get relief until you get up to 10 or 12 mg . If it doesn't work at that point it probably isn't going to work.
Also, if you have a regular headache time, say 2:00 a.m., and try to trick the CH by staying up past that time, it can just wait until an hour after you go to sleep. It's trickier than you are. You really can't outfox them that way.
Definitely try to get some preventative meds.
Good luck.
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No, it's not a headache--it's a Stage Ten Primary Chronic Periodic Idiopathic Trigeminovascular Cephalalgic Crisis.
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TxBasslady
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Re: a wandering story from down under...
« Reply #9 on: Jan 21st, 2004, 12:47am » |
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Welcome to the board, Benj
Keep in touch and let us know how you are doing.
Lots of great information and support here.
Sending you lots of pf vibes,
Jean
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How lucky I am... to have known someone who was so hard to say goodbye too.
Take a kid fishin
www.takemefishin.org
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Turts
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Re: a wandering story from down under...
« Reply #10 on: Jan 21st, 2004, 2:43am » |
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Gday Benj.
I too am an Aussie
O2 is available from Airliquide
$8 bottle hire
$16 regulator hire
$12 per refill( 470 litres) I use 1 bottle every 7-10 days
I also use Imigran Nasal Spray as abortive
and Verapamil as a prevent
You will need a neuro referal for the 02 stating use and flow rate prescibed as regulator is limited to flowrate.
If you can visit Sydney:
Professor Morris @ Westmead Hospital is SENSATIONAL
Professor Zagami @ St George Private Hospital is also very good.
I too, have never met a Clusterhead. Maybe we could set something up one day and change this.
I am interested to hear that you could not continue a career in the Navy as there have been a couple of US Clusterheads who have just entered duty??
Wishing you PFD's
Turtsh
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'I'm very brave generally,' he went on in a low voice: 'only today I happen to have a headache.' (Lewis Carroll)
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Timmi
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Re: a wandering story from down under...
« Reply #11 on: Jan 21st, 2004, 4:04am » |
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Hang in there Ozzy!I was lucky.Mine did'nt start untill after I had gotten out of the Navy.But the first time it hit me it really threw me for a loop.about the fith one I had I went to the ER.By the time I was seen it had passed and the nice lady DR more or less accused me of trying to get narcotics.She did'nt believe I could be in agony one minute and fine the next.That kept me away from DRs for a long time.I did'nt even know what the name of my tormentor was untill 1998.I suffered many years without any medical or family support.I was always told it was stress or that I was worrying myself into a headache.
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it's got you now.just lie there and be it's bitch untill it leaves.
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benj
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Re: a wandering story from down under...
« Reply #12 on: Jan 21st, 2004, 10:40am » |
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brad267 - if you show up at my place with large doses of Imigran I'll goddam give you the keys to the city! beers are cold and stronger than yours - welcome to share one with me anytime you like.
Turts - great info, thanks, sure to come in VERY handy. also I really like the idea of catching up and meeting another pain dweller - firebrix tells me it's an amazing experience. I have some mates in Sydney that I try and catch up with, I'll stay in touch..
benj
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I don't think of all the misery, but of all the beauty that still remains - Anne Frank
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jonny
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Re: a wandering story from down under...
« Reply #13 on: Jan 21st, 2004, 7:06pm » |
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on Jan 21st, 2004, 10:40am, benj wrote:| beers are cold and stronger than yours - welcome to share one with me anytime you like. |
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Im on my way....LOL 
...........................jonny
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Turts
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Re: a wandering story from down under...
« Reply #14 on: Jan 22nd, 2004, 5:09am » |
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Quote:Posted by: jonny Posted on: Today at 10:06am
on Today at 1:40am, benj wrote:beers are cold and stronger than yours - welcome to share one with me anytime you like.
Im on my way....LOL
...........................jonny
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You guys are more than welcome to come to my house.
I have homebrew on keg.
Nothin like cold beer on tap, especially at your own bar!!!(and just that little bit stronger again. about 7%)
Heres a little Aussie song that you must learn to drink beers in Australia..
Aussie beer chant:
Heres to (insert name etc...jonny)
hes true blue,
he's a pisspot,
through and through,
he's a bastard,
so they say,
tried to go to heaven,
but he went the other way,
so drink it down, down, down, down, etc ( fades out until the drink is finished)
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'I'm very brave generally,' he went on in a low voice: 'only today I happen to have a headache.' (Lewis Carroll)
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Timmi
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Re: a wandering story from down under...
« Reply #15 on: Jan 22nd, 2004, 5:42am » |
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I've heard it was more fun down there(Aus.)than people should be allowed to have.y'all are very lucky(except for the CHs).
Great people you are!Here's to ya!(he says as he drinks his weak watery American beer)
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it's got you now.just lie there and be it's bitch untill it leaves.
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benj
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15 year cluster vet...and counting...
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Re: a wandering story from down under...
« Reply #16 on: Jan 22nd, 2004, 8:37am » |
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well it looks like the job's on Turts!
we're just gonna have to shout the whole goddam country to some lagers 
so much more fun talking about beer than thinking about my current cluster.
Actually, my beau Mel's a great cook and I have just today armed her with a new BarB (LOOK OUT! THIS WOMAN LOVES TO COOK!) so you guys better make that beer + snags. Wanna make that next cluster get together here in Melbourne AUST? Just remember:
 + = then  !
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I don't think of all the misery, but of all the beauty that still remains - Anne Frank
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Charlie
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Re: a wandering story from down under...
« Reply #17 on: Jan 22nd, 2004, 5:41pm » |
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Welcome aboard and sorry you have to deal with this horror. You'll find lots of ideas here. Now all we need is an idea or two on how to get Down Under beer here. 
Here is a link to the goofy sounding but effective technique learned from my late neurologist:
http://www.netsync.net/users/charlies/
Good luck and let us know how you're doing.
Charlie
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