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Dragonwynd
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My name is Alex and I have been having CH since the age of 17 and i am now 44 going on 45. I was accepted on the bridges to access(GSK) program and was given a 60 day supply which is 10 vials...HAHAHAHAHAHA! The best i can get out of that is 20 days if I am lucky. I called them and asked why and they said it was a take as needed med. So I explain the obvious and it was like talking to one of my tennis shoes? Go figure. My dad had these and after having these he developed ( dont know the correct spelling so i will spell as it sounds) Tickdellaroo, causes sharp pain in facial areas, and was wondering if anyone might have noticed this for themselves? Thanks for your time...Alex
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Gator
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Re: new here
« Reply #1 on: Oct 11th, 2005, 4:48pm » |
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Welcome to the website. Sucks that you had a reason to come looking for us, but damned glad you found us. I haven't personally heard of anyone developing tic douloureux from CH, but I suppose anything's possible. Pull up a chair and tell us a little about yourself. How do you deal with ch? Are you episodic or chronic? Give us a glimpse into what meds you have taken. Damn, I'm nosey, eh?
As you have no doubt discovered, the links to the left have tons of good info in them. There is more info on the OUCH website. Read everything you can and print stuff out that seems applicable. Unfortunately, because of the rarity of the disorder, you may end up teaching whatever doctor about CH.
Here is a link to read and print and take to your doctor. It describes preventative, transitional, abortive and surgical treatments for CH.
http://www.brightok.net/~mnjday/chtherapy.pdf
Here is a link to some non-prescription alternatives different people have used to help with the pain:
http://www.clusterheadaches.org/resources/non_script_treat.htm
If you are currently taking medications, I would suggest you talk with your doctor before taking any of the nutritional supplements. At the very least check for interactions at a website such as:
http://www.drugdigest.org/DD/Home/AllAboutDrugs
Nutritional supplements can interact with prescription meds just the same as some prescription meds interact with each other. Better safe than sorry where your health is concerned.
Oxygen is an excellent abortive. Works for most people when used properly. Defintely try this. As well as it works, I have a hard time understanding why more doctors do not prescribe it. It must be used correctly to work, though. Get it prescribed for up to 15 lpm through a non-rebreathing mask for no more than 20 minutes. If your doc won't prescribe it for you, you might try welder's O2. It's the same pure oxygen used by medical suppliers. Many people here use it and would be more than happy to help you set it up. Here are some links that tells about using O2:
http://www.maplefallswebdesign.com/misc/oxygen/oxygen.htm
http://www.headaches.org/consumer/topicsheets/oxygen.html
http://www.chhelp.org/mhni.html
Here is a link to a letter that may help explain things to your friends, family and co-workers.
http://www.clusterheadaches.org.uk/home/index.cfm?address=../clusters/no te_colleagues.cfm&added=04/01/04&code=CB
Again, welcome to CH.com. There's no better place in the world for info and support of cluster headaches.
Gator
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| « Last Edit: Oct 11th, 2005, 4:50pm by Gator » |
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Kris_in_SJ
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Re: new here
« Reply #2 on: Oct 11th, 2005, 7:44pm » |
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Hi Alex,
Gator gave you links to everything you need to learn more about treatments for this condition.
My question - what is bridges to access (GSK)? Never heard of it. I'd like to know more.
Kris
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lionsound
CH.com Alumnus
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breathe
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Re: new here
« Reply #3 on: Oct 11th, 2005, 8:24pm » |
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Welcome, Alex 
read, read, read.....lots of good info and support and I bet you have some to share as well!
Be well and PF!
-lionsound
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Gator
CH.com Alumnus
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Re: new here
« Reply #4 on: Oct 11th, 2005, 8:43pm » |
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on Oct 11th, 2005, 7:44pm, Kris_in_SJ wrote:Hi Alex,
Gator gave you links to everything you need to learn more about treatments for this condition.
My question - what is bridges to access (GSK)? Never heard of it. I'd like to know more.
Kris |
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Ask and ye shall receive, Kris!
http://bridgestoaccess.gsk.com/
Quote:Welcome to Bridges to Access
GlaxoSmithKline patient assistance programs provided $372.5 million (WAC value) worth of medicines and enrolled over 475,000 patients during 2004.
GlaxoSmithKline believes that timely access to prescription medicines is an essential part of cost-effective and comprehensive medical care. As a leader in pharmaceutical research, we are committed to helping patients gain access to the breakthrough medicines we discover.
As part of that commitment, GlaxoSmithKline has established Bridges to Access which provides out-patient medications to eligible low-income patients residing in the United States who do not have prescription drug benefits.
Please browse our site for more information on the program and its benefits including specific information about our:
Eligibility criteria
Enrollment forms
Telephone enrollment process
Mail order distribution system for obtaining refill medicines
Enhanced telephone menu options that allow advocates to request enrollment forms, order prescription refills, add or change a prescription, and check patient eligibility status 24 hours a day, seven days a week
Annual re-enrollment process
Contact Information
Enrollment form and other patient specific-questions - 1-866-PATIENT
(1-866-728-436
All other questions - 1-888-825-5249
Monday - Friday, 8am - 8pm Eastern Time.
Bridges to Access
PO Box 29038
Phoenix, AZ 85038-9038
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Modified to add: There is a link to the Partners for Prescription Assistance on the OUCH website as well. The PPA website has links to hundreds of programs to assist people in getting the medications they need, including the Bridges to Access program.
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| « Last Edit: Oct 11th, 2005, 9:52pm by Gator » |
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jon019
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Good Gollee Gator, what a wonderful post! Life changing information all in one spot.
Not quoting it because its all there in the msg above.
It has truly humbled me and shown me the error of my ways. I entered this forum throwing out advice and opinion without paying my dues or regard for those who have gone before me. May have paid my dues to the beast (and he keeps collecting, greedy bastard) but not to you folks.
My apologies to those I have offended, turned off, or even bemused. Thing is, have still received WAY more than I could ever contribute. Can't thank you all enough,
and appreciate your forebearance.
When I work up the courage and can relay my history
intelligently, I will properly introduce myself.
Highest regards
Jon019
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Jasmyn
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Each day will be a new trick in life's journey
 
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Re: new here
« Reply #6 on: Oct 12th, 2005, 12:52am » |
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Welcome Alex.
Thanks Gator for all that info, even for us oldies. Saved it to take to my neuro when I see him the 19th.
Good luck to you Alex and wishing you PFDAN's
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Jazz 
Madness is proclaimed by society’s inability to accept its own infallibility
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Kris_in_SJ
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Re: new here
« Reply #7 on: Oct 12th, 2005, 8:13am » |
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Great post, Gator!
The info was totally new to me, and could be so valuable to many who come here. You da man!
Kris
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Sandy_C
CH.com Alumnus
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Burn that bra!
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Re: new here
« Reply #8 on: Oct 12th, 2005, 1:09pm » |
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Thanks Gator. Gave me lot of new info that I know I can use. Great links and wonderful information (a lot that is new to me)
You've been more helpful to me than you will ever know.
Sandy
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