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Topic: Has anyon ever beat the beast? (Read 5997 times) |
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ClusterChuck
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The BEAST rises again, and again, and again, and .
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Re: Has anyon ever beat the beast?
« Reply #25 on: Apr 24th, 2007, 12:45am » |
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OK ... I am calming down ...
Would this doctor accept studies from England? There are plenty over there ...
Chuck
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"No man can be happy without a friend, nor be sure of his friend till he is unhappy."
Thomas Fuller
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Linda_Howell
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Re: Has anyon ever beat the beast?
« Reply #26 on: Apr 24th, 2007, 12:52am » |
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Take a chill pill Chuckie.
I am as mad as you are about this I am on it!!!!! 
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Kindness, is gladdening the hearts of those who are traveling the dark journey with us.
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ClusterChuck
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Re: Has anyon ever beat the beast?
« Reply #27 on: Apr 24th, 2007, 12:57am » |
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on Apr 24th, 2007, 12:52am, Linda_Howell wrote:| Take a chill pill Chuckie. |
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Are YOU trying to tell ME what to do??
HUH???
Chuck
PS: Yes dear ... what ever you say luv .... heehee <hangs my head in shame>
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"No man can be happy without a friend, nor be sure of his friend till he is unhappy."
Thomas Fuller
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zanychef
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i'm busting with a masx cant really go wrong can i
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Re: Has anyon ever beat the beast?
« Reply #28 on: Apr 24th, 2007, 1:10am » |
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every time a hit goes is beating the beast 24 yrs of it i think i'm winning 
can i come over and punch the dolt too?? 
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| « Last Edit: Apr 24th, 2007, 1:15am by zanychef » |
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plenty of time to sleep now me headaches aint too bad
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Linda_Howell
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Re: Has anyon ever beat the beast?
« Reply #29 on: Apr 24th, 2007, 1:22am » |
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Chris it may seem like Chuck and I are at odds on this to you. We are not. We both are so very adament about the use of 02..... and we will both try to help you with this if it is the last breath we take.
It may be Chucks last breath if he doesn't learn his place around here, but I will continue.
(this is all in fun Chris)
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zanychef
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Re: Has anyon ever beat the beast?
« Reply #30 on: Apr 24th, 2007, 1:28am » |
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i too swear by o2 and hate it when docs wont accept that it works but imho chuck and linda know better than me
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plenty of time to sleep now me headaches aint too bad
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Linda_Howell
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Re: Has anyon ever beat the beast?
« Reply #31 on: Apr 24th, 2007, 1:35am » |
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Quote: but imho chuck and linda know better than me
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I think I love you Zany Chef. 
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zanychef
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Re: Has anyon ever beat the beast?
« Reply #32 on: Apr 24th, 2007, 1:41am » |
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awww thanks hun but i only got married last week
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plenty of time to sleep now me headaches aint too bad
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ClusterChuck
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Re: Has anyon ever beat the beast?
« Reply #33 on: Apr 24th, 2007, 1:44am » |
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on Apr 24th, 2007, 1:41am, zanychef wrote:| awww thanks hun but i only got married last week |
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Make sure you practise the following, in the mirror ... Keep doing it so that you look sincere:
"Yes, dear, You are right. I am sorry. "
Learn it WELL ....
Chuck
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"No man can be happy without a friend, nor be sure of his friend till he is unhappy."
Thomas Fuller
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zanychef
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i'm busting with a masx cant really go wrong can i
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Re: Has anyon ever beat the beast?
« Reply #34 on: Apr 24th, 2007, 1:48am » |
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on Apr 24th, 2007, 1:44am, ClusterChuck wrote:
Make sure you practise the following, in the mirror ... Keep doing it so that you look sincere:
"Yes, dear, You are right. I am sorry. "
Learn it WELL ....
Chuck |
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you know i wont remember that chuck
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| « Last Edit: Apr 24th, 2007, 1:49am by zanychef » |
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plenty of time to sleep now me headaches aint too bad
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ClusterChris
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Re: Has anyon ever beat the beast?
« Reply #36 on: Apr 24th, 2007, 6:09am » |
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Thank you for your input guys. This is my second doctor that has said the same thing. My last doctor actually game me some hope and said, " if you can provide me with some proof, I may give it to ya" So I printed off all the info I could from here and dropped it off at her office. My next appt she told me there was no clinical evidence, That she can't go by what people on a website have typed. Pretty frustrating to say the least. Oh you guys will love this one. When the doc walked in the room today she says" So, your cluster migraines are back?" and asked me if I get any vommitting. When i replied "no", she says, "well thats a bonus" anyway, Thats my venting. About the nw doctor thig, there is no way I can get another doctor. We are short 17 doctors right now. Finding one is next to impossible.
Thanks guys
Chris
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Brew
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Re: Has anyon ever beat the beast?
« Reply #37 on: Apr 24th, 2007, 7:39am » |
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Move. Or get a welding rig and buy a regulator and mask on e-bay.
Gotta love socialized medicine.
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zanychef
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Re: Has anyon ever beat the beast?
« Reply #38 on: Apr 24th, 2007, 8:03am » |
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god that doc makes me wanna puke!!!!
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plenty of time to sleep now me headaches aint too bad
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seasonalboomer
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Re: Has anyon ever beat the beast?
« Reply #39 on: Apr 24th, 2007, 9:37am » |
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Chris,
Sorry to hear that pal.
Sounds like your doctor is a sadist. No puking and that's a bonus? Count me in amongst the group that can really get worked up on this subject. The pomposity of a physician to act in this way is beyond me.
I had my own battle with a GP on this subject and I shamed the guy int finally giving it to me. I literally shamed him. I went in psyched and focused on making sure that he knew who the boss was and that I wsn't going to take no for an answer. Of course.... take that too far and the O.P.P. might be called....
Find a new doc. Print out all you can. Write the review boards on this doc and move on.
Scott
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Margi
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Re: Has anyon ever beat the beast?
« Reply #40 on: Apr 24th, 2007, 10:24am » |
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Hi Chris (and thanks for the heads up about this post, Linda). We're in Calgary and my husband has been a clusterhead for more than 20 years, episodically. We had to get a referral to a neuro to get our medicinal oxygen, we couldn't find a GP who would prescribe it either. For the most part, GP's don't study enough about headache to speak intelligently on the subject of cluster. Don't ask your GP for a referral - DEMAND a referral and ask to be seen on an urgent care basis. OR go to Emerg and get a referral that way. Oxygen has long been accepted in the neurology community as a viable cluster treatment - yes, even here in 'backwards old Canada'  .
Print out that oxygen info from Maple Falls website and take it with you to the neuro. You HAVE to also get a prescription for a non-rebreather mask - your neuro probably won't offer that right off the bat but it makes the world of difference in the efficiency of oxygen therapy. Get on the O2 at the first sign of attack and stay on it, breathing normally, for at least 10 minutes. You can also order a better mask over the internet from this website: www.clustermasx.com - VERY efficient delivery.
Failing medicinal oxygen, you could go the welder's oxygen route but, sadly, in order to get welder's oxygen tanks filled here in Canada you have to produce a welder's license to the oxygen suppliers....but welder's oxygen CAN be had if you have friends in the industry.
One last thing - you must have a high flow rate regulator on your o2 tank. Out west here we use Medigas or Praxair(Vitalaire) and we get the big S tanks. The little E tanks last about 3 headaches for my hubby, whereas the S tank lasts about 30. Medigas delivers and once you have a prescription, they'll supply you for life - nothing needs to be renewed. With a letter from your neuro - your health insurance should reimburse you the cost of the oxygen as well. An S tank costs us about $30 a month. The masks are about $4 to purchase, clustermasx about $25 Cdn. SO much more affordable than Imitrex, just as effective, but TONS easier on your body!
Hope this helps.
Margi
p.s. my Flames have joined your Leafs on the golf course.  But the Sens and the Canucks are still in it, so at least we still have some homegrown to cheer for!
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| « Last Edit: Apr 24th, 2007, 10:26am by Margi » |
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ClusterChris
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Re: Has anyon ever beat the beast?
« Reply #41 on: Apr 24th, 2007, 11:05am » |
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Margi,
Thank you for the great reply. I will call the doc today and have an app made with a neuro. Last Neuro I had gave me a beta blocker to the back of the head, 45 minutes later my wife was rushing me to the ER. on the kip scale it was a 10++ I thougt it was the end. Needless to say I never wentr back to a Neuro. Canadian healthcare is free for a reason. It's Shit!
Thank you once again and I'll keep ya posted. Probably won't be for a few months, thats how long it took me to get in last time!
I was rooting for the flames once my leafs failed to make it. Sucks for both of us! I hate ottawa so go Canucks!!
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barry_sword
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Re: Has anyon ever beat the beast?
« Reply #42 on: Apr 24th, 2007, 11:38am » |
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[quote author=ClusterChris link=board=chspecific;num=1177250665;start=25#41 date=04/24/07 at 11:05:23]
Canadian healthcare is free for a reason. It's Shit!
Hi Chris, pleased to meet you. Our health care is not exactly free, remember Daulton McGuinty? We do pay for it through our income tax, we just don't see it.
It took only about one month to see my neuro in Huntsville, Ont. as a new patient, and now when I need to see him it is within the week. Maybe shop around for a different neuro. Good help is out there.
PFNAD Chris, Barry
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Margi
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Re: Has anyon ever beat the beast?
« Reply #43 on: Apr 24th, 2007, 12:10pm » |
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Chris, a beta blocker to the back of the head?? Do you mean he did a procedure or was this a med he gave you? Beta blockers are usually meds, but there is also an occipital nerve block that (I think?) does involve insertion of a needle at the base of your skull.
Once you get your referral to the neuro's office, be pro-active and call them yourself (after the doc has made the appointment for you, I mean). Tell them that you have cluster headaches and are "desparate" to be seen as quickly as possible, that you don't know how much longer you can 'take this pain'. I know that's extreme and may not be true for you, but sometimes ya gotta go the extra mile to get by the receptionist. We had to here and we were initially told the waiting list was a YEAR long wait and my hubby was in no shape to wait a year - also, that cycle would most likely have ended by that point. I called the receptionist and, we were seen that afternoon. Push hard for this, Chris.
Barry, I don't know Ontario geography, but is your neuro close to where Chris lives in Welland? Could you maybe give Chris the neuro's name?
Go Canucks!
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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 #44 on: Apr 24th, 2007, 12:12pm » |
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Thanks Barry,
Your help is appreciated. What would I do to shop around for a neuro though? I have no idea who is good, bad etc? And another problem is that by the time i do get to see him/her, I will probably be out of cycle again.
You are right with the healthcare situation. Just told us here that our property taxes are going up another 5 percent. Just rediculous.
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ClusterChris
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Re: Has anyon ever beat the beast?
« Reply #45 on: Apr 24th, 2007, 12:21pm » |
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Sorry margi, I think you were replying at the same time as I. YES, i recieved a needle to the base of my scull. It was the worst Ch I ever had Hands Down! I guess I'll start doing some Neurologist shopping. I'll see what I can come up with. Thanks
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Margi
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Re: Has anyon ever beat the beast?
« Reply #46 on: Apr 24th, 2007, 12:22pm » |
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Chris, we used to have a website for OUCH Canada and there was a list of recommended doctors by province. We have closed the charity but I'll see if I can find that list again....bear with me.
Here you go:
http://www.helpforheadaches.com/doctors/migraine-headache-specialists-ca nada.htm
This is from our friend, Brent Lucas' website - Help for Headaches. It's written about migraine but Brent himself is a clusterhead and the doctors recommended there deal in both types. I can personally vouch for Doc Robinson out in Vancouver, so I assume the others listed there are in the same class. You could ask your GP to be referred to one of them, but it looks like it means travel to TO though... 
I have also heard of that Dr. Gawel and I've put out an APB to my friend, Carol (Grandma_Sweet_Boy) to see if she can help, too. She's a clusterhead in the TO area and she knows EVERYTHING I'm thinking that might even be her doctor.
Hang in there, Chris, the calvary is coming! 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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| « Last Edit: Apr 24th, 2007, 12:30pm by Margi » |
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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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IMHO (which in my universe is correct)
kathy copelin, ch.com 8/8/06
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Linda_Howell
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Re: Has anyon ever beat the beast?
« Reply #47 on: Apr 24th, 2007, 12:29pm » |
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Thanks for coming so promptly to the rescue, Margi
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Kindness, is gladdening the hearts of those who are traveling the dark journey with us.
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Maffumatt
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Re: Has anyon ever beat the beast?
« Reply #48 on: Apr 24th, 2007, 12:29pm » |
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Maybe you should look into welding supply O2, I use it and it is alot cheaper than getting it from a home health supplier. Just don't tell them you are breathing it.
BTW If it was me, instead of you supplying them with proof that O2 works for CH, I would tell them to supply you with proof it doesn't.
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Margi
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Re: Has anyon ever beat the beast?
« Reply #49 on: Apr 24th, 2007, 12:31pm » |
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Matt, not so easy to do in Canada as I said, but it can be done. It's actually easier to get medicinal O2 here unless you have welder friends.
For you Luinda? Anything.....
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| « Last Edit: Apr 24th, 2007, 12:32pm by Margi » |
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http://askusaboutourgrandkids.photosite.com/
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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