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Topic: Anyone else in Australia? (Read 3487 times) |
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Barry_T_Coles
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Re: Anyone else in Australia?
« Reply #175 on: Mar 21st, 2006, 11:02pm » |
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Hi Michael
Welcome back, I do remember contacting you by Email when I first come on board and I understand when you’re hurting it’s sometimes difficult to respond even if you want to.
Geez had I know where you were I would have caught up as I have only just got back to Karratha 10/3/06 after spending 5 weeks in Perth on holidays & my daughters wedding.
As for the o2 it’s good you have got onto it I’m sure if you get the setup and flow rate right you should have a lot of success.
Firstly; well done for getting oxy care to react so quickly, I didn’t bother I just checked up on what was available from this site, once I had talked thing’s over with my GP and because I already had an account with BOC there wasn’t a problem with getting the gear or gas.
Let us know how you go with the bureaucracy and the cost; I purchased the flow gauge myself and got the non re-breather mask from the ER, the oxy gauge & regulator I already had for oxy/accet welding, I pay $44.00 / year rent on the “D” size bottle & $54.00 for a refill.
I approached HBF with trying to get benefits for the gear & they wouldn’t look at it
( damnd if I know why I pay top rates?).
Some Do’s & Don’ts: Make sure you get a non re-breather mask, that way you are sure of getting the best quality air.
Don’t use the strap on the mask; better still remove it completely, that way you remove the risk of falling asleep with the mask still on once you have aborted the hit and as you will understand we get little enough sleep and our body will take any opportunity to catch up on some badly needed ZZZ’s
I have mine set for a flow rate of 10 litres/ minute and the regulator set at WELD, I leave the settings alone and simply turn the main valve on when needed, that way as soon as you need to get on the gas there’s no mucking around just turn it on & start huffing.
As for the amount you will use that will depend on how often you need to get on the gas, but as a not so accurate gauge I emptied my first bottle after 12 months but I was over the cycle as I knew it and have only been hit at low Kip levels since ( it appears that I may have turned chronic as I am still shadowing and get hit as soon as I have a beer) I would guess that if you are going through a normal 8 – 12 week cycle you would go through 1 “D” size bottle in that time and possibly more, once again that will depend on how badly you are getting hit, only time will tell as we are all different in how this tricky little shit effects us.
A “C “size bottle is a handy size if you travel a lot as I do & I am looking at getting one myself as the D is a little bulky.
I will Email you with the details & pics of the bubbler I am using it will help greatly with stopping your mouth & throat from drying out.
Take this along with you to your GP and discuss the pro’s & con’s remembering that I’m not a doctor.
Best of luck
Barry
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Dragonman
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Re: Anyone else in Australia?
« Reply #176 on: Mar 24th, 2006, 2:42pm » |
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Hey everyone..
Hi Barry, thanks for you help and info, great to have some solid stuff to see what is going on with trials and real informative info, Have all the pricing and oxy care info, how to get, pricing etc and btw its a delivery service also. any one needs it now post a msg here or email me...whatever i can do ill help as I have O2 now and onlt took two days to set up and recieve... have one E size bottle and a C for work, things have been so bad Ive taken the weekend off as wasnt coping with the pain and work one bit...not that time off will change my present situation just needed the separation as its been a shock to the system.
I had four serious hits today three two hourly & ( and 11 am when trying to sleep after work and one at 5 which was when i was on the O2 and it creeped apon me and with in 15mins i was gone, shocking experience and it freeked me out...I have an ambo friend who is giving me some NB masks and clear flow so ill keep trying when i get them today, any help would be appreciated on what your experience has been and ??? diff ways to use would be appreciated...I will post info I have asap or if you have a fax and scanner barry let me know and ill send it too you..or anyone else for that matter otherwise ill get it on when able.
Thanks again all..going to sleep now..its 3.30am and will sleep upright and give it a go...any info on other meds or imitrex info or your positive use to help get time out from this would be appreciated as im using to much cafergot and indicid..needing other options asap...LYGs
Michael
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YaBBC
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AussieBrian
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Re: Anyone else in Australia?
« Reply #177 on: Mar 24th, 2006, 7:33pm » |
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That's a lot of questions, Mike. You a policeman?
Firstly, Immitrex is called Immigran here in God's Own and it's a terrific medication for many headache types. In pill form it's not much use to us as it's very slow to kick in but many people have great results from both the nasal inhaler or as an injection. It's horrifically expensive but there's apparently a trick and you can get two or three shots from the one needle.
Oxygen is another beauty. For myself I have to be on it within about three milli-seconds of a hit beginning to get any real help as an abortive. Any longer and it will perhaps stop things getting worse but that's about all. It's just a matter of playing around to find the recipe that works for you.
As to other medications, you'll quickly find that your pharmacist is your best friend and able to give you a lot more info than your doc. Better info, too.
There's none of us more than a PM away,
Brian way up north.
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Dragonman
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Re: Anyone else in Australia?
« Reply #178 on: Mar 24th, 2006, 8:31pm » |
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Hey Brian,
Thanks Mate..appreciate the post.
Ive used the immigran nasal some yrs ago but wasnt to much help, but its about the timing with everything it seems. not too keen on jabbin me self but I have a good doc so illl have chat to him monday, hes a good guy whom I just have to phone and like with the O2 and meds I didnt have to see him for an appointment, he just faxed oxy care the other day when i called him and left a script at the front desk when my cycle started...wish there were more like him around. Had 5 hrs sleeping upright and woke with a shadow so hopped straight on the gas, I also have a hand held zapper (similar results to a tens machine) which releases the muscles..so got in early like you said brian an nipped it in the butt..feel good I got it before it got me !!! I did have good luck over east with a pharmacist so will go shiopping for good one here in the big smoke asap... thanks brian, certainly helps to blab it out as i did last night before hittin the hay and wake up to a response with support, I appreciate it mate and glad to have you lot on side and part of the team.
I had good luck from the owner of the business i run when I took this weekend of as i told him to chk out the CH site as in cycle it was too stressfulll at that time to phone and explain so i texted him and he was also supportive and i think really elieved my predicament which takes the pressure off as my sub managers are not so mature or understanding, had same results with co workers thinkin its only a headache but I also realise it is hard for them to get a grip on it..its a classic really and ill laugh even louder when my cycle finishes... Any enough blabbing from me..LYGs..stay well and lets keep kickin goals.
Cheers and beers to you Brian !!!
Michael
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Kate in Oz
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Re: Anyone else in Australia?
« Reply #179 on: Mar 25th, 2006, 5:05am » |
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Hi Michael,
I just wanted to drop a line and say hi - I see the fellas have got you sorted out, giving good advice and support. Aint this place great 
Just wondering have you tried Verapimil? I'm in the middle of a cycle now - started taking the verapimil early cos it takes a while to kick in - and so far still only shadowing. Have had a couple of head bangers but nothing like the excruciating (sp?) pain of a full blown hit. Anyway just thought I'd mention it to you.
Also a few years ago I was taking the cafergot - and taking too many and got outrageous amount of rebound headaches - so just watch out for that. After a very long cycle (6months) Epilem (sp?) knocked it on the head in a matter of days. Unfortunately didn't work the next cycle - but everything is worth a try when the beasty is lurking.
All the best to you, hope your cycle eases up real soon.
Kate
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Dragonman
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Re: Anyone else in Australia?
« Reply #180 on: Mar 25th, 2006, 6:56am » |
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Hi Kate,
Thanks for the info and yeah this place is the greatest, dont know how ive handled it in the past with out it.
Ill contact my Dr first thing monday about the Verapamil for preventitive and also look into the Epilem to knock it on the head. OMG how I would love that right now !!!
I did try Endep some years ago which worked but it was after 4-5 days when the drug reached a certain dose level which was awesome. Sadly the nxt cycle it didnt work, it was a drug used for epilepsy.
Im not able to work like this at the moment thats for sure and my job is stressfull enough with out the constant shadows and kip 10s ive been having, staff and patrons just wouldnt see me in the same light if they were to watch me dance with the Devil. Mmmm dont even want to go there LOL !!!
I will hold back on the cafergot and use the indicid supps which work well but im so over my way to keep the devil away. O2 seems to be helping also but early days with the big bottle.
Its great to have some other recommended options from you all.  I do appreciate it as you would know and understand.
Thanks so much Kate..
Love ya heaps for caring
Michael
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YaBBC
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Dragonman
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Re: Anyone else in Australia?
« Reply #181 on: Mar 27th, 2006, 6:09am » |
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Hi everyone,
Just LYG... O2 is aborting attacks  which is the most awesome thing ever, really amazing feeling to have that on board now, between 10 - 15 litre per min depending where I am at, and have a spare C bottle for work so I hope I can get back this week. Will post info about Oxy care asap or please PM me if needed urgently or post, as it was very easy to obtain with your drs support. I am also having accupuncture and chinese herbs so I will let you know how that goes over the next week. My Doc has given me the Veramapil Kate and he wants me to have half a 240mg tab for a month then move on to a full tab per day, im feeling a little drowsy which I imagine will deminish with more use. He said no to the epilem but gave me endep which I had success with before but this time will have before sleep so see how I go with that also. Using Indicid 100mg for the pain which works well and the occasional cafergot so im ready now to face the beast full on with some confidence for the first time ever. I have found a good pharmicist nxt to my drs surgery and hes intreaged with the info I am producing and will look into the imigram shots as he didnt know that was possible. Just wanted to let you all know I appreciate your support and knowledge you have freely given from your big aussie hearts.
All the best with PFD for all of us.
Best Regards
Michael
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AussieBrian
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Re: Anyone else in Australia?
« Reply #182 on: Mar 27th, 2006, 5:49pm » |
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Goodonya, Michael, you give is all hope. Just remember the golden thread that permeates our CH lives - nil carborundum illigitimus.
In English that means "Don't let the bastage grind you down" but we Aussies know the true translation is "Don't get sand in your vaseline".
Happy daze,
The Team.
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seccsij
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Re: Anyone else in Australia?
« Reply #183 on: Mar 28th, 2006, 2:25pm » |
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I suffered for 18 years B4 I was "allowed" to have O2. I came from a small town then and was believed to be med-dependant and neurotic! Finally, in 2003, a new Dr arrived from the city and expressed surprise that I'd never been treated with O2. He gave me a letter for the local ER. I now live in Sydney and my new Dr has it on file that I'm to have O2 but..........If I want it, I'm to go to ER and not to my Dr. I am in cycle now (wk4) and I've been coping alone because the usual waiting time at ER here is about 7 hours  . I'd rather be at home in that condition for that amount of time so I'm battling through as best I can. 
Good luck and I hope you live near a city
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Dragonman
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Re: Anyone else in Australia?
« Reply #184 on: Mar 28th, 2006, 6:16pm » |
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Hi Seccsij,
I understand your situation completely and feel your pain...
You will get the O2 tomorrow as it is a next day delivery service and the first delivery must be delivered to your door. Try and convince them you need it today and also have your Dr do the same when he faxes Oxy Care, rules are made to be broken especially for us CH sufferers so dont give up .
Here is the process of getting O2 into your home...
Ring OXY CARE AUST
PH: 1800050999
Tell them you are a Cluster Headache Sufferer and you want to set up an account for Medical Oxygen to be delivered to your home. They will tell you...
An account can be established once they recieve a faxed letter from your GP Doctor, stating your name and address, the flow rate and also the hours per day that the oxgen will be required to be used.
FAX: 1800624149 - (this is the direct fax line to the medical team there who will process your order and arrange the delivery
We are all using between 10 - 15 litres per minute depending on the severity of the HIT and the hours used per day is individual to all of us, anyway once you have the account set up you can order what you need as I have now done.
I have almost used a E size bottle in the last 7 days and have ordered two more E size to be delivered today so I dont run out and to cut down the cost of delivery.
Crazy huh, but anything to keep the beast away
The pricing is as follows:
400C - 490 litres - $06.45 per month rental
Reg Flow meter - $21.46 per month rental
D size Trolley - $05.97 per month rental
Refill $19.92 - $31.36 per full cylinder depending on location plus the delivery and handling charges
400D - 1640 litres - $09.09 per month rental
Reg Flow Meter - $21.46 per month rental
C/D Size Trolley - $05.97 per month rental
Refill $30.51 - $49.59 per full cylinder depending on location plus the delivery and handling charges
400E - 4100 litres - $10.41 per month rental
Reg Flow Meter - $21.46 per month rental
C/D Size Trolley - $05.97 per month rental
Refill $48.31 - $85.51 per full cylinder depending on location plus the delivery and handling charges
Delivery- $36.11 (incl GST) for up to 5 items
Handling fee of $9.90 ( incl GST) depending where you live.
I dont know why the pricing per refill is like this as I am yet to recieve an invoice statment.
I used the canula breathing system they supplied to start with and just put it in my mouth instead of using my nose to breath, it works but can waste needed oxygen when breathing out, I have just recieved a non re-reather mask from an ambo friend so do your best to get one as they are the bees knees and the bag refills with O2 when you breath out, so no wastage occurs and you get the pure O2 with ease.
They also suggested for me to get an E size bottle to start and work it out from there.
You will then still have enough time to re-order on thursday if you feel you need more for the weekend.
You can also consider a concentrator if you may use for more than 4 hrs per day which can supply medical grade oxygen 24hrs a day 7 days a week if needed, just to let you know. Not sure on the price for that one.
Since I have had O2 im in front even though im having multiple hits..it has taken somewhat the fear out of the equasion.
Also try to get Verapamil from your Dr as a preventative, I also use Indocid supps for the pain which work very well.
Good Luck !!! I hope you can get this sorted quickly and easily.
Let us know how you manage.
PFDs for us all !!!
Michael
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seccsij
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Re: Anyone else in Australia?
« Reply #185 on: Apr 14th, 2006, 7:59pm » |
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I'm in week 6 now and this time I've taken the usual maximum daily doses of aspro, panafen and nurofen for the little demons (kip 4-5) and Cafergot with mersyndol for the kip 8-10's.
Have now tried oxygenated water (yuk), kudzu powder, and melatonin.
This last week, I ran out of Cafergot (I am on a pension and it's $21 per script) and took Anagraine for a couple of days which helped me catch up on a few zzzzz's (a few). Still woke up to the beast but slept for 4 hrs in between instead of 2!
I have been taking 15 mg Melatonin 1/2 hr before bed and 2 sprays of Beconase nasal spray in the mornings for the last 7 days and, although history tells me I am nearing the end of this Cluster, Weeks 5 - 9 are usually the MOST painful. This is not the case at the mo. 
My shadows are not as obvious (they are usually more like an all day kip2). (At the mo they are too mild to scale.)
In the past when I find something that works, it usually doesn't work the next time but I'm staying poisitive anyway. I am learning to breathe more deeply as well which is helping a little too.
I would never have known about Melatonin if not for this great group of people. Thank You all and I hope we are all PF !!!!!!!!!!!!!!!!!!!!
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AussieBrian
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Re: Anyone else in Australia?
« Reply #186 on: Apr 15th, 2006, 12:37am » |
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on Apr 14th, 2006, 7:59pm, seccsij wrote:| In the past when I find something that works, it usually doesn't work the next time but I'm staying poisitive anyway. |
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I still reckon staying positive is the most important part of the whole shebang. Also on the up-side, what didn't work previously might just turn out to be a saviour this time round.
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Vulcrania horrendus - twice daily, then two at night in lieu of sleep.
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