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Topic: Sleepless in St. Louis (Read 305 times) |
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mac194
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Sleepless in St. Louis
« on: Feb 19th, 2007, 10:12am » |
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Hello all,
I am new to this board, so please bear with me. I was diagnosed with CH by my GP about 8 years ago. I have never seen a neuro, and was just looking for a little direction. My GP always puts me on the verap and prednisone, and gives me Imitrex shots and inhalers. This current cycle Im in has been going for about three months, and as you all know, sleep is now non existent. This is the longest cycle that I have ever had. I have read through ALOT of the posts on this board, and it seems that what my GP is doing is correct. I was just wondering if any of you out there thought that it may be a good idea that I also see a neuro.
I have also spoke with my doc about O2. I know that my insurance wont cover it, but from what I am reading on this board, it seems that it does wonders for alot of you. Any advice on how to obtain it in the cheapest fashion possible?
I just want to say that having a site like this has done wonders for my attitude in dealing with this awful, awful, disease, and i want to thank each and every one of you for sharing your insight and stories on this board.
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Lobster
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Re: Sleepless in St. Louis
« Reply #1 on: Feb 19th, 2007, 12:25pm » |
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Heya mate...
I am not too far from you... over in Jerseyville, IL.
You will want to buy a 'ClusterMasx'... do a search out here to find out about it.
If worse comes to worse you can use welding oxygen. Look that up out here as well.
You will want to buy your own new tanks, so that you can control the cleanliness of them.
Some will slam the use of welding o2. These are the same people that will drink water out of their kitchen tap but consider water out of their bathroom tap 'yucky'.
Most concerns with welding o2 revolve around the cleanliness of the tank.
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Linda_Howell
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Hearing is one thing. Listening is another.
  
 
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Re: Sleepless in St. Louis
« Reply #2 on: Feb 19th, 2007, 12:28pm » |
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Hi and welcome,
You will need a prescription for the 02 from your Dr. You don't need for him to be a Neuro for that. Look up in your local phone book, the address and phone number for "Lincare". It is a medical supply place and they are located almost everywhere in the US.
You may have to sit down with them and work out a deal where Ins. is not in the equation, but if any supplier will work with you... it is Lincare.
If you can find a Dr. who is willing to listen and be open to new treatments or is knowedgable about clusters I would have to say you don't need to have a Neuro to treat CH.
Linda
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Kindness, is gladdening the hearts of those who are traveling the dark journey with us.
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Bob_Johnson
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Re: Sleepless in St. Louis
« Reply #3 on: Feb 19th, 2007, 12:36pm » |
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http://www.headachedrugs.com/pdf/ha2006.pdf Dr. Robbins site. Then explore the entire site by deleting everything following. com/ and then hit enter.
======================================================================== =
Here is a link to read and print and take to your doctor. It describes preventive, transitional, abortive and surgical treatments for CH. Written by one of the better headache docs in the U.S. (2002)
http://www.brightok.net/~mnjday/chtherapy.pdf
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Bob Johnson
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Gator
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Re: Sleepless in St. Louis
« Reply #5 on: Feb 19th, 2007, 3:42pm » |
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In a lot of cases, if you have your doctor write a letter of medical necessity, the insurance company will cave.
If that fails, lots of people here (myself included) use welder's O2.
LMAO @ Lobster Funny, but true. 
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mac194
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Re: Sleepless in St. Louis
« Reply #6 on: Feb 19th, 2007, 4:08pm » |
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I spoke to the doc and Ins today and found out that my ins will now cover the O2. Thank you all for the info!
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froggy
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Re: Sleepless in St. Louis
« Reply #7 on: Feb 19th, 2007, 7:58pm » |
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We went through Lincare when Tony tried the Oxygen for a month.
They were exceptional.
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froggy
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Linda_Howell
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Re: Sleepless in St. Louis
« Reply #8 on: Feb 19th, 2007, 10:47pm » |
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Yes Lincare is definetly exceptional.
Froggy I know you are new here but I'd just like to say from what I've seen, you are also doing an exceptional job at being a supporter and I want you to know that I think you rock !!!!!!!!!!
Linda
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Kindness, is gladdening the hearts of those who are traveling the dark journey with us.
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