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Topic: Has anyon ever beat the beast? (Read 5996 times) |
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Guiseppi
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Re: Has anyon ever beat the beast?
« Reply #75 on: Apr 25th, 2007, 11:28am » |
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All my house plants....a big plastic sheet........like my poor wife doesn't think I'm mental enough as it is!!  It is amazing how much we all encourage the 02 route these days...I just wish the medical field was a little quicker to jump on our band wagon.
And don't worry about Annette getting chased away by one post, she's a bit tougher then that!
Guiseppi!
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ClusterChris
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Re: Has anyon ever beat the beast?
« Reply #76 on: Apr 25th, 2007, 11:37am » |
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lol i should do it just to see my wifes face when she gets in from work!
I just wanted to reassure annette that what she was doing is appreciated thats all! No need for somebody to come into this post and downgrade her like that! Shes helpin me out greatly!
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Maffumatt
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Re: Has anyon ever beat the beast?
« Reply #77 on: Apr 25th, 2007, 11:39am » |
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on Apr 25th, 2007, 11:28am, Guiseppi wrote:
And don't worry about Annette getting chased away by one post, she's a bit tougher then that!
Guiseppi! |
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That she is, that little lady is tougher than a woodpeckers lips.
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| « Last Edit: Apr 25th, 2007, 11:40am by CaSS » |
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Margi
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Re: Has anyon ever beat the beast?
« Reply #78 on: Apr 25th, 2007, 12:44pm » |
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woodpeckers have lips?
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And, on the Eighth Day...God created Beer (to stop the Canadians from taking over the world)
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kathy copelin, ch.com 8/8/06
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ClusterChris
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Re: Has anyon ever beat the beast?
« Reply #79 on: Apr 25th, 2007, 12:51pm » |
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Must only be on those American Woodpeckers. OOps did I just say that? 
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BB
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Re: Has anyon ever beat the beast?
« Reply #80 on: Apr 25th, 2007, 12:54pm » |
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on Apr 25th, 2007, 12:44pm, Margi wrote:
LOL ! Margi, I was wondering the same thing ...
At least he didnt say I was tougher than cows hide ! 
Annette
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Guiseppi
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Re: Has anyon ever beat the beast?
« Reply #81 on: Apr 25th, 2007, 3:03pm » |
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woodpeckers have lips?
In my never ending attempts to end the downward spiral, I soooo wasn't going to go there......
Guiseppi
(But OMG the comebacks I'm choking on!!!!)
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Rosybabe
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Re: Has anyon ever beat the beast?
« Reply #82 on: Apr 25th, 2007, 3:41pm » |
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 woodpeckers have lips?
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Grandma_Sweet_Boy
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Re: Has anyon ever beat the beast?
« Reply #83 on: Apr 25th, 2007, 4:43pm » |
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on Apr 25th, 2007, 12:44pm, Margi wrote:
Whoda thunk it?
Annette - you just keep on keepin' on with what you're doing. Most of us appreciate all you do, not just here but the countless times you've provided assistance in PM's and emails too!
Carol
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ClusterChris
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Re: Has anyon ever beat the beast?
« Reply #85 on: Apr 25th, 2007, 11:55pm » |
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Thats a cool device, didn't know the existed! What the hell is an oxygen bar anyway? please dont tell me its like a bar but people pay to breathe oxygen.
Thats a little outta my budget but I appreciate the post!
Chris
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BB
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Re: Has anyon ever beat the beast?
« Reply #86 on: Apr 26th, 2007, 12:57am » |
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After discussing privately with Chris via PM, I have written this letter to be faxed to his GP with print outs of other relevant information on CH and treatment, particularly to support oxygen as first line abortive.
I have Chris's approval on this. 
To : Dr. J. Mueller
Northtown Medical Associates
905.732.4777 (phone)
905.732.7262 (fax)
Northtown Centre, 325 Thorold Road West
WELLAND
Ontario L3C 3W4
CANADA
Dear Dr Mueller,
My name is Annette Do and I am a registered General Practitioner working in Sydney Australia. I would like to take this opportunity to introduce myself to you and to offer you some practical information on Cluster headaches and its treatments.
My husband was diagnosed last year with Cluster headaches by Prof Spira at Prince of Wales Hospital in Sydney. Being his supporter while working closely with the Neurologists and Pain Specialists and Psychiatrist to develop a best treatment plan for my husband had opened my eyes to how difficult it is for an average GP to deal with this rare but extremely painful and delibitating condition. There was hardly any mention of it at Medical School and still there is very little known about this complex syndrome. Patients often are misdiagnosed for years and miss out on the best effective treatments due to difficulty accessing up to date information.
I have since done a lot of research into the condition and have gathered many useful information and guides on how to diagnose and to successfully treat cluster headaches. I would like to share this information with as many doctors as possible, especially GPs. I know we do not have a lot of time on our hands to research this deeply into each and every illness that we encounter in our surgery, therefore I hope you will find the information useful and easy to read.
I would like to place a special emphasis on oxygen being the first line abortive treatment for cluster headaches, even before Triptans. Many studies recently all over the world are confirming the safety and the efficacy of inhaling pure oxygen via a non rebreather mask at high flow rate (minimum 8L/min, ideally up to 15L/min ) at the first twinge of pain to abort a cluster headache attack. Its cheap, its easy to use, its safe and its effective. Home oxygen therapy is a must for all cluster headache patients. Neurologists and other headache specialists are starting to recognize and recommend this treatment, from Dr Kudrow in the US to Prof Goadsby in England.
Personally I can vouch how well oxygen had worked for my husband. His case was considered atypical and he was not responding well to many cluster medications, until he received home oxygen. Once he mastered the techniques he managed to abort more than 80% of his attacks, reducing the need for triptans from several a day down to one every few days. This has reduced the side effects of triptans and other medications and improved his overal health.
As GP, we are in an unique and perfect position to recommend and prescribe home oxygen for our cluster headache patients. Home oxygen has been prescribed for many years to patients with respiratory diseases and has had a very good track record for safety. As it lessens the need for other more expensive medications such as triptans and zyprexa and pain killers, it also makes good economic sense.
I am including other relevant information on cluster headaches for your perusal. I can be contacted at the above address for further information. I will be more than happy to discuss with you any aspect of the condition. You can also reach me via my email annsie99@aapt.net.au.
I trust that you have found the information useful. I wish you every success in treating your patients. You will be amazed at the difference it will make to your cluster headache patients general health, quality of life and it will also improve the lives of their families.
Yours sincerely,
Dr Annette Do
BHB. MBChB
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BB
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Re: Has anyon ever beat the beast?
« Reply #87 on: Apr 26th, 2007, 1:03am » |
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I also hereby offer the same service to anyone on the Board who thinks that a similar letter to their doctor(s) might help.
Please do not ever hesitate to drop me a PM or an email. I am more than happy to do whatever I can in my capacity to help out.
Love to you all and painfree wishes.
Annette
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ClusterChris
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Re: Has anyon ever beat the beast?
« Reply #88 on: Apr 26th, 2007, 7:52am » |
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To sum her up in one word....Unbelievable!!!
Thank you once again!
Chris!
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Brew
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Re: Has anyon ever beat the beast?
« Reply #89 on: Apr 26th, 2007, 7:56am » |
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Annette, you are a godsend. If there was ever any doubt as to why you ended up with clusterhead, this kind of thing should clear it up a bit.
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chewy
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Re: Has anyon ever beat the beast?
« Reply #90 on: Apr 26th, 2007, 8:25am » |
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Good letter Annette. Pay no attention to BikerBob.
Being discredited by that guy counts as an asset! 
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Angie
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Re: Has anyon ever beat the beast?
« Reply #91 on: Apr 26th, 2007, 8:28am » |
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Hi Chris
I am Barry's wife Angie and Annette has been a great help here. I do not post much but I read everything to gain knowledge to help him.
O2 seems the only line of defense as everyone has said. It is time for us to move in the right direction to fight this nasty affliction.
Thanks Margi and Annette for all the advise, we appreciate this.
Chris, hang in there we are all together in this.
Angie
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ClusterChris
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Re: Has anyon ever beat the beast?
« Reply #92 on: Apr 26th, 2007, 8:41am » |
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Hello Angie, Nice to meet ya!
If your going with barry this morning, Don't let him leave without that o2 script!
Sorry for the language, but we need to get this shit taken care of in Canada.
They will give us anything under the sun regardless of the side effects but when it comes to pure oxygen, thats a No No. Gee you think theres a litttle bit of financial persuation going on here?
Brutal!
Hope all goes well today!
Chris
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Maffumatt
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Re: Has anyon ever beat the beast?
« Reply #93 on: Apr 26th, 2007, 9:20am » |
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To me, this is what CH.com is all about. Good job!
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Margi
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Re: Has anyon ever beat the beast?
« Reply #94 on: Apr 26th, 2007, 10:29am » |
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on Apr 26th, 2007, 8:41am, ClusterChris wrote:
Sorry for the language, but we need to get this shit taken care of in Canada.
They will give us anything under the sun regardless of the side effects but when it comes to pure oxygen, thats a No No. Gee you think theres a litttle bit of financial persuation going on here?
Brutal!
Hope all goes well today!
Chris |
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No, Chris, I think it's more a question of our doctors being so horribly overworked because many of them have gotten greedy and are moving to the States where they can make bigger bucks. The ones that decide to stay (and, trust me, the salary they make here IS well above the rest of us!) just don't have the time to keep current with new research because of their huge patient roster.
Our GP's are especially overloaded - that's why it's so important to get pushed through to a specialist, one who HAS been trained in headache care. We do have some fabulous Headache Clinics in Canada - it's just that it sometimes takes moving Heaven and Earth to get in to them.
I think it's more a lack of education on our GP's part than anything.
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And, on the Eighth Day...God created Beer (to stop the Canadians from taking over the world)
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kathy copelin, ch.com 8/8/06
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ClusterChris
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Re: Has anyon ever beat the beast?
« Reply #95 on: Apr 26th, 2007, 10:34am » |
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But why do they not even flinch to prescribe us every med under the sun but when it comes to oxygen it's a no no. regardless of their knowledge, why are they so hesitent on prescribing it if somedoy tells them it helps?
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| « Last Edit: Apr 26th, 2007, 10:34am by ClusterChris » |
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Margi
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Re: Has anyon ever beat the beast?
« Reply #96 on: Apr 26th, 2007, 10:41am » |
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actually, oxygen therapy CAN be dangerous for someone who doesn't need it. Let me do some research for you but I know there's been lots written on the dangers of oxygen.
Here's a bit about the dangers of oxygen therapy (I assume for people with weakened pulmonary function?)
"Dangers
Pulmonary oxygen toxicity has not been seen at the low rates of flow used for long-term oxygen therapy. Although supplementary oxygen in patients with increased Paco2 may theoretically worsen hypercapnia, any increase in Paco2 in patients receiving long-term oxygen therapy is usually small and well tolerated. In two large trials of long-term oxygen therapy, hypercapnia was not a problem — probably because patients were in a stable condition.3,4 However, serious hypercapnia may occasionally develop, making further investigation and consideration of non-invasive ventilation appropriate. The development of hypercapnia is suggested by an obvious decrease in respiratory rate and depth, as well as the development of somnolence and disorientation. The risk appears greater during acute exacerbations of disease and in patients who are generally more hypoxaemic.27,28 Sedatives, narcotics, alcohol and other drugs, which impair the central regulation of breathing, should not be used in unstable patients with hypercapnia who are receiving oxygen therapy."
taken from this article: http://www.mja.com.au/public/issues/182_12_200605/mcd10865_fm.html#eleme ntId-1089306
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| « Last Edit: Apr 26th, 2007, 10:48am by Margi » |
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And, on the Eighth Day...God created Beer (to stop the Canadians from taking over the world)
source unknown
IMHO (which in my universe is correct)
kathy copelin, ch.com 8/8/06
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ClusterChris
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Re: Has anyon ever beat the beast?
« Reply #97 on: Apr 26th, 2007, 10:58am » |
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Damn you margi, You have got an answer for everything don't you. I am trying to lash out at the doctors and your defending them! Shame on you !
LOL just kidding, Thanks for the info.
Chris
P.S. I still think its shit 
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Margi
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Re: Has anyon ever beat the beast?
« Reply #98 on: Apr 26th, 2007, 11:00am » |
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LOL Chris - I think I've heard those very words coming out of my hubby's mouth too. Only maybe he phrased it a bit differently .....'knowitallsmartass' or something to that effect.
for what it's worth, I think it's shit too but...the scientist in me has to keep digging until I found out WHY things are they way they are.
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And, on the Eighth Day...God created Beer (to stop the Canadians from taking over the world)
source unknown
IMHO (which in my universe is correct)
kathy copelin, ch.com 8/8/06
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ClusterChris
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Re: Has anyon ever beat the beast?
« Reply #99 on: Apr 26th, 2007, 11:03am » |
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I hear ya!
Keep up the good work!
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