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Topic: Has anyon ever beat the beast? (Read 5986 times) |
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barry_sword
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Re: Has anyon ever beat the beast?
« Reply #50 on: Apr 24th, 2007, 12:33pm » |
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Chris, I really don't know about your situation as far as traveling goes. I really lucked out having the most concerning and compassionate neuro the first time around.
Maybe you can ask if other neuro's are a option and see a different one that understands CH's.
My neuro is only 30 minutes away from where I live. I will give you his name and address, do not know if this will help or not. Welland is quite a ways away from here,and there has to be good ones closer to you.
Best of luck to you my friend,
Barry
Blaine Taylor foell, MD FRCP(C)
23 Dairy lane, unit #2
Huntsville, Ontario
P1H 1T4
Tel: 705-789-6632
Fax:705-789-1922
Hope you find one soon that will help you!!
Barry
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ClusterChris
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Re: Has anyon ever beat the beast?
« Reply #51 on: Apr 24th, 2007, 12:50pm » |
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on Apr 24th, 2007, 12:22pm, Margi wrote:| How often are you getting hit and how long have you been in cycle? Do you have good support at home? |
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Thank you for the link, I'm going to look it over. Toronto isn't so bad, Only an hour away. I've been in cycle for about 2 weeks now, getting hit abou 3 times a day and twice out of my sleep. Just came off of 2 years pf. Support at home is great. My wife totally understands. The problem is trying to explain it to my 4 year old why daddy always has a towel wrapped aroun his head. FInaly had to send the kids to the sitters while I sit at home while my wife works. It just kills me knowing they are there and I'm home but I had no choice. That pisses me off more then the headaches themselves! #&*$&%^$. The welding route may be an option as well (brother in law is a mechanic). I'll keep yas posted!
Chris
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ClusterChris
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Re: Has anyon ever beat the beast?
« Reply #52 on: Apr 24th, 2007, 12:51pm » |
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Thank You Barry!
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ClusterChris
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Re: Has anyon ever beat the beast?
« Reply #53 on: Apr 24th, 2007, 1:18pm » |
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I'm off to work for the night. For those of you that use MSN Messenger you can find me at canadiantrash@hotmail.com please dont use that to send me e-mail because i never check it. It's just my junk e-mail account. Thanks!
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Grandma_Sweet_Boy
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Re: Has anyon ever beat the beast?
« Reply #54 on: Apr 24th, 2007, 6:28pm » |
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Hey Chris - Dr. Gawal is in Toronto. He's not my neuro but I found his name for one of our other Ontario cluster folks.
If Major is around and reading the boards at all, I'm sure she can let you know what her husband thought of him, but it seems to me he was find and I know Jeff had 02 prescribed for him.
If you need any help trying to find phone #'s let me know and I'll get them for you when I go back into my office.
Carol
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BB
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Re: Has anyon ever beat the beast?
« Reply #55 on: Apr 24th, 2007, 8:36pm » |
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Hi ClusterChris
Print this out, this is the whole documentation recommending home oxygen therapy as a treatment for clusterheadaches.
http://www.bibliotheque.assnat.qc.ca/01/MONO/2007/02/711744.pdf
Its a technology brief written by Dr Reiner Banken for the AETMIS, recommending home oxygen therapy to the Canadian Health Department in May 2002. Its an official government document.
The AETMIS is the Agence d'evaluation des technologies et des modes intervention en sante'. Its a official body that looks at recommendation of different treatments and therapies for different medical condition and recommending them to the Health Department.
The original article titled " L'oxygenotherapie a domicile pour le traitement de la cephalee de Horton " is also available.
It has the list of names of the specialists ( mainly in Quebec ) who recommend home oxygen as the first line treatment for CH. At the bottom it has the list of all the references ie pages and pages of studies done in Canada to support this evidence.
There are also phone numbers for further information too.
Give this to your GP so that she can read to her ( evil ) heart content and she can ring these people to find out more. That should give her all the supporting information she needs to convince her of oxygen therapy.
Best of luck and painfree wishes to you.
Annette
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ClusterChris
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Re: Has anyon ever beat the beast?
« Reply #57 on: Apr 24th, 2007, 11:50pm » |
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Thank you vey much BB. I am printing that info as we speak. my main concern is, will she actually read it. I'll definately give it a shot though. If anything maybe it will get her to stop calling then migrains! Here is my Doctors info, if you wish to speak with her that may help as well.
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
As much as I would like for everyone to call and beat it into her, I prefer not to have that, I still have to deal with her! It may still come to that though so sit tight lol
You guys are great and I can't thank you enough!
Chris
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BB
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Re: Has anyon ever beat the beast?
« Reply #58 on: Apr 25th, 2007, 1:54am » |
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Hi Chris,
I am going to fax your doctor a formal letter tomorrow ( today is public holiday here ) introducing myself and telling her briefly about my personal experience with CH ( my husband is a clusterhead ) and some formal information about home oxygen as first line abortive treatment.
I would then courteously invite her to contact me via fax, email, phone ...whatever if she would like to know more about the condition and its treatments.
That way she wont feel "threatened" and wont take it out on you. She shouldnt anyway as a professional medical person but hey, we are all humans and we dont like it so much when we get pounced on, even when we are in the wrong.
So lets be civilised and hopefully she will find learning more about CH interesting.
Best of luck and painfree wishes to you.
Annette
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BikerBob
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Re: Has anyon ever beat the beast?
« Reply #59 on: Apr 25th, 2007, 2:38am » |
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Chris, about that article that Annette googled... if you give that article to your doctor, tell your doctor it's wrong in that it says 7-10 lpm rather than 10-15 lpm. Insist on 10-15 lpm and be sure to get a regulator that goes up to 15 lpm rather than 10. I think it's a bad idea to have a "supporter" from Australia getting involved with your doctor and medical care, especially Annette. If I were you I would rely on the advice of Margi, Barry_sword and Grandma_Sweet_Boy.
BB
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ClusterChuck
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Re: Has anyon ever beat the beast?
« Reply #60 on: Apr 25th, 2007, 3:23am » |
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on Apr 25th, 2007, 2:38am, BikerBob wrote:| Chris, about that article that Annette googled... if you give that article to your doctor, tell your doctor it's wrong in that it says 7-10 lpm rather than 10-15 lpm. Insist on 10-15 lpm and be sure to get a regulator that goes up to 15 lpm rather than 10. |
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Even if she only gives it for 7 to 10 LPM, Chris can buy his own regulator, very reasonably, from eBay, or many other places.
on Apr 25th, 2007, 2:38am, BikerBob wrote:I think it's a bad idea to have a "supporter" from Australia getting involved with your doctor and medical care, especially Annette. If I were you I would rely on the advice of Margi, Barry_sword and Grandma_Sweet_Boy.
BB |
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Bob, I totally diasagree with you. Are you aware, that Annette (BB) is not only a supporter, but a family practitioner doctor? I feel Annette's input would be VERY helpful!
Chuck
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BB
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Re: Has anyon ever beat the beast?
« Reply #61 on: Apr 25th, 2007, 3:26am » |
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on Apr 25th, 2007, 2:38am, BikerBob wrote: I think it's a bad idea to have a "supporter" from Australia getting involved with your doctor and medical care, especially Annette.
BB |
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LOL ! Bob, I was asked if I could help. I didnt jump in here to be some heroes. I made genuine offers to Chris. Its up to him what he wants to do with the offers.
If you can help Chris out better, please go right ahead. I will gladly cede to the experts.
Annette
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Batch
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Re: Has anyon ever beat the beast?
« Reply #62 on: Apr 25th, 2007, 6:07am » |
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Chris,
Bless my long gray whiskers… this whole thing with your doctor not giving you an Rx for O2 is making my hair hurt. ICFBI!!! At this point, it appears that taking reams of paper to her will not work. Are you sure she’s not a Proctologist? I’m beginning to think she wouldn’t understand clinical proof that 100% O2 is an effective CH abortive if a sigmoidoscope jumped up and bit her.
In case she is having trouble with the diagnosis, here’s a passage from the International Classification of Headache Disorders (ICHD-II), the bible on headache pain diagnosis.
Cluster Headache and Other Trigeminal Autonomic Cephalalgias.
3.1 Cluster Headache
3.1.1 Episodic
2.1.2 Chronic
Cluster Headache as defined by the ICHD-II Code: 3.1
Attacks of severe, strictly unilateral pain which is orbital, supraorbital. temporal or in any combination of these sites, lasting 15-180 minutes and occurring from once every other day to 8 times a day. The attacks are associated with one or more of the following, all of which are ipsilateral: conjuctival injection, lacrimation, nasal congestion, rhinorrhoea, forehead and facial sweating, miosis, ptosis, eyelid oedema. Most patients are restless and agitated during an attack.
Unless you’ve managed to get through to this doc with all the good material on the use of medical O2 as a cluster headache abortive that Annette sent, I think a second medical opinion is the best course of action.
The beauty of socialized medicine is there are lots of folks standing around to make sure it’s bureaucratically administered correctly and as inexpensively as they think possible.
Call an administrator and ask for another doctor. Bureaucrats love paperwork… Give them the citations Annette sent with the following message: A box of 10 ea. 5 mg Imitrex nasal spray applicators costs $167.50 USD in Canada. That should be enough to abort 10 cluster headache attacks. Home medical supply companies in Canada provide D-Sized O2 cylinder at costs $20 USD each. A fully charged D-Sized O2 cylinder should provide enough medical O2 to abort 4 attacks using 15 liters/min flow rate and 5 minutes per attack with a properly functioning non-rebreather O2 mask. The numbers should be clear enough for event he most bumbling bureaucrat. $16.75 vs $5 to abort each cluster headache attack.
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ClusterChris
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Re: Has anyon ever beat the beast?
« Reply #63 on: Apr 25th, 2007, 8:45am » |
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Thanks for that info Batch. I wish it was that easy to switch doctors. We are currently short 17 Doctors in our area. I am very lucky to have just the one I got. Thats why I'm thinkin that the neuro is th best route to go. I thought about the welding route for the O2 but was talked out of it by family because if I ever had even the smallest fire in the house and the insurance company caught windo of me having that tank in here illegaly, I would not be covered! So unless I can get through to my doctor or get a neuro to hook me up, I think I may be screwed!
Thanks again for your help
Chris
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Margi
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Re: Has anyon ever beat the beast?
« Reply #64 on: Apr 25th, 2007, 9:52am » |
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Annette, I'm going to answer your PM right here in this thread, ok? No, you were not overstepping your boundaries with what you posted here - THANK YOU VERY MUCH FOR DOING IT!! Stop worrying - you did nothing wrong. 
Chris, Annette is very genuine in her offer here and she's worked her as$ off educating herself about cluster in the last while - I wish more GP's were like her! My hat's off to you, Annette!
For what it's worth (and no disrespect meant to you, BikerBob), Mike can abort his clusters with 8 litres per minute. We're cheap - we try to make the O2 last as long as possible and the lower flow rate achieves that AND nips his clusters in the bud if he gets on it early enough. I've seen him go as high as 10 if he leaves it too late but...rarely.
Chris - did you ask your GP for that referral yet? Huh? Didja? Always good to have a backup plan if her head is still stuck in the mud...
Carol - thank you - I think between the two of us, we do actually have one full functioning brain when it comes to remembering names. Hell, pretty soon we'll be able to hide our own Easter eggs, huh? Right, 'Nuthermum? 
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| « Last Edit: Apr 25th, 2007, 9:54am by Margi » |
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ClusterChris
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Re: Has anyon ever beat the beast?
« Reply #65 on: Apr 25th, 2007, 10:08am » |
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no referral yet, I'm actually going to wait and see what happens with Barry, If he gets the 02 then i might contact his neuro.
I also want to see if all this info will give my gp a wake up call and a change of heart.
Anette,
Please dont stop what your doing because of one post. The world could use alot more people like you!
Chris
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Maffumatt
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Re: Has anyon ever beat the beast?
« Reply #66 on: Apr 25th, 2007, 10:17am » |
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on Apr 25th, 2007, 10:08am, ClusterChris wrote:
Anette,
Please dont stop what your doing because of one post. The world could use alot more people like you!
Chris
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I concur
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barry_sword
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Re: Has anyon ever beat the beast?
« Reply #67 on: Apr 25th, 2007, 10:17am » |
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Annette, I sure do appreciate all that you do for us here and want to personally say thank-you on the board.
THANK YOU ANNETTE!!!!!
Barry
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Bob P
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Re: Has anyon ever beat the beast?
« Reply #68 on: Apr 25th, 2007, 10:18am » |
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I too get by just fine with 7-8 lpm. Aborts in 5-10 minutes.
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ClusterChris
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Re: Has anyon ever beat the beast?
« Reply #69 on: Apr 25th, 2007, 10:52am » |
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You think if i gathered up all the plants in the house and then put a big plastic sheet around them I could get pure oxygen?? Just a thought lol, you guys are really making me want the oxygen!
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barry_sword
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Re: Has anyon ever beat the beast?
« Reply #70 on: Apr 25th, 2007, 11:00am » |
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Chris, these wonderful people have been telling me to get o2 from day one, and I am now just willing to get it.
I have a "Homecare o2 Center" about 1km. from my house but I still need a docs script for it, but it will be close by and easy to get if I get the script.
If I get it, you are more than welcome to come here and share it, but you will have to bring your own mask!
My thoughts will be with you in my neuros office tomorrow. I will ask him about the neuros in your area also.
Barry
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ClusterChris
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Re: Has anyon ever beat the beast?
« Reply #71 on: Apr 25th, 2007, 11:05am » |
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I remember years ago, not too many people were really into the oxygen thing. But now it sems everyone is using it with great effects, so hell, I'm all over it. Thanks for that Barry, Maybe one day down the road I'll take you up on that offer LOL. Maybe we can put a big tank in the middle of two lazy boys and watch some hockey together!
Sound like a plan lol?
Chris
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| « Last Edit: Apr 25th, 2007, 11:06am by ClusterChris » |
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Margi
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Re: Has anyon ever beat the beast?
« Reply #72 on: Apr 25th, 2007, 11:20am » |
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on Apr 25th, 2007, 11:05am, ClusterChris wrote: Maybe we can put a big tank in the middle of two lazy boys and watch some hockey together!
Sound like a plan lol?
Chris |
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LOL because....we ARE Canadian! (insert theme music to Hockey Night in Canada here). Da da da da da DAH da!!
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| « Last Edit: Apr 25th, 2007, 11:21am by Margi » |
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barry_sword
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Re: Has anyon ever beat the beast?
« Reply #73 on: Apr 25th, 2007, 11:21am » |
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We will maybe work on that. 
I just keep laughing thinking about the plants and plastic sheet!
I just hope they are not plastic plants.
If you do this, a pic is a must!!!
Barry
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ClusterChris
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Re: Has anyon ever beat the beast?
« Reply #74 on: Apr 25th, 2007, 11:24am » |
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LOL If i get the energy, I may just do it for shits and giggles!
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