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        Cluster Headache Help and Support >> Cluster Headache Specific >> Neoro App't Update - Not a Happy Camper 
        
(Message started by: headbanger45 on Aug 28^th, 2007, 1:32pm)

Title: Neoro App't Update - Not a Happy Camper
Post by headbanger45 on Aug 28^th, 2007, 1:32pm

Again, we fall in the misunderstood catagory of pain sufferers. I had a long awaited neoro app't yesterday with a doctor here in Dallas, Dr. Greybeal, Southwest Med Center. The first time I went to him, he seemed to understand the cluster gig and that was good news to me. He gave me what I asked for. Yesterday, different animal. I ask for O2 and he blew me off, said that it was not reimbursable or something to that effect. Like money is an object when your head is falling off. He gave me varapamil and a migraine abortive (Relpax). Six pills per fill. Insurance will allow 1 refill per month. That would be six pills per month. With one maybe two bangs per day - hell let's just say 1 bang per day, that 6 days, what the hell am I suppose to do for the other 24 days - Advil ?? Everytime I go to the doctor I get pissed. I do have the meds and 02 I need to get through an episode (6-12 weeks), but to bad I have to resort to the black market to get 'em. Well, back in search of an informed doctor in Dallas, again. Venting all gone - back to face the beast and should I mention without a lot of help from the medical field...........or did I ??? >:(

Title: Re: Neoro App't Update - Not a Happy Camper
Post by sandie99 on Aug 28^th, 2007, 1:42pm

I'm so sorry that you didn't get 02... [smiley=hug.gif]

My neuro used "I don't think it works for ch" excuse, which is getting pretty old and lame.

But check out all the other treatments. Energy drinks, water, ginger ale, ice pack, caffeine tablets, cold/hot showers... there are plenty of things you can add to your treatment. Some will help, some won't. But check out your options and try what works.

Lots of PF wishes,
Sanna

Title: Re: Neoro App't Update - Not a Happy Camper
Post by clusterwife on Aug 28^th, 2007, 1:48pm

OPP is usually the only way to go. That is"other-peoples-perscriptions" The doctors rarely give us what we want or need, we shop around, get informed, almost like buying a car. go figure....Leah.

Title: Re: Neoro App't Update - Not a Happy Camper
Post by lorac on Aug 28^th, 2007, 3:26pm

Keep trying! Once you find the right guy,or gal, You will want to hug the heck out of them.

There are doc's out there that know.! I had a really great one. then I moved 650 miles away..Had to go through the hunt all over again...It sucks! The worst is when they say I"LL BE RIGHT BACK, and you know they are going to consult some BOOK! Just run, before they experiment on you! lorac

Title: Re: Neoro App't Update - Not a Happy Camper
Post by Bob_Johnson on Aug 28^th, 2007, 3:30pm

This is not only for headbanger: Listen Up!

1. Keep a headache journal so that you have black/white stats to show the frequency and intensity of your attacks. It really carries weight with docs who are trained in detail.

2. Print and use Rozen's article to discuss options. Docs will trust medical folks who they recognize have experience/autHority.
------
http://www.plainboard.com/ch/chtherapy.pdf

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)
-------

3. Print out the messages you see here which are reports or medical abstracts about CH, effective therapies,etc.. Again, this kind of material carries weight when you are trying to pitch, e.g., value of oxygen, use of olanzapine, whatever.

4. Best way to lose a doc's support: pitch a fit!

Title: Re: Neoro App't Update - Not a Happy Camper
Post by Karla on Aug 28^th, 2007, 3:57pm

Ask for imitrix shots, nasal sprays, tablets, zomig nasal spray and tablets, frova, amerge, relpax, axert, and oxygen. You cant take any of these within 24 hours of eachother but you get the idea. Multiple perscriptions will get you through the month. That is what I do. Also I didn't see Melatonin mentioned. Many take it at bedtime to get a good night sleep with out any hits from the beast. Good luck!

Title: Re: Neoro App't Update - Not a Happy Camper
Post by purpleydog on Aug 28^th, 2007, 7:11pm

Sounds like he's being controlled by the insurance company. Call your insurance and ask them why the restriction on Relpax, and call the doc and tell him you want trex nasal spray or injections. When your insurance limits you on that, call them on it, have your doc write a letter of need. Ask him to write the script for O2, he has no business worrying about whether it's a reimbursable expense, unless the insurance really has him by the balls.

If he won't do it, get some welders O2, and a regulator for it (talk to Jonny), and a non-rebreather mask.

Insurance sucks, they aren't interested in medical care, just $.

Title: Re: Neoro App't Update - Not a Happy Camper
Post by BarbaraD on Aug 29^th, 2007, 8:33am

Talk to some peeps in Dallas and find a neuro who knows something about CH. Or if you don't mind a 100 mile drive I'll give you the name of a doc in Longview who DOES know something (he's worth the drive and treats a LOT of CHers and keeps up on the latest in treatments).

If you can't get a script for O2 - get the welders O2.

Good luck

Hugs BD

Title: Re: Neoro App't Update - Not a Happy Camper
Post by chewy on Aug 31^st, 2007, 7:26am

Texas

Herbert Edmonson
Houston

Preston Harrison MD
Tyler

Howard Derman
Houston

Steven Herzog
Dallas

Dr Steven Herzog
Dallas

Robert Cain
Austin

Laurie
Meadors

Robert Cain
Austin

Ronald Wayne Hurt
Houston

Maureen Watts, MD
Dallas

LEONARD HERSHKOWITZ
HOUSTON

Craig Dubois
Austin

Dr. Stuart B. Black
Dallas

Dr. Rajat Gupta
Austin

Rexford Anderson
Abilene

Dr. Ronald Wayne Hurt
Houston

Steven Herzog
DALLAS

Gary Sharpless
Conroe

Warren Hunt MD
Gladewater

Wayne Hurt MD
Houston

Richard Hamer MD
Longview

Philip Blumm M.D.
Houston

John Sklar
Ft Worth/Weaterford

Carman Montoya
San Antonio

John Sklar
Ft. Worth

Ninan Mathew
Houston

JOHN HARNEY, MD
Richardson

Vestal Caperton
Conroe

Kelly Baker
San Antonio

Leonard Hershkowitz
Houston

Dr. Jean-Claude Krusz

Annodyne Headache and Paincare

Dallas

Dr. Marci Roy

Austin Headache Clinic

Austin

Title: Re: Neoro App't Update - Not a Happy Camper
Post by Big_OUCH on Aug 31^st, 2007, 7:58am

on 08/28/07 at 13:48:00, clusterwife wrote:

OPP is usually the only way to go. That is"other-peoples-perscriptions" The doctors rarely give us what we want or need, we shop around, get informed, almost like buying a car. go figure....Leah.

I recommend that anyone considering "OPP" read Catlin's post "HELP" on the "General" board before going down that road.

Title: Re: Neoro App't Update - Not a Happy Camper
Post by Sandy_C on Aug 31^st, 2007, 12:53pm

I am with Bob's post. Keep the journal, print out everything he has linked and take it back to your "neuro". And, Pitch that fit! This guy does seem to be more interested in what your insurance will pay him versus how he can help you.

I also highly support Barb's post. If you can't get a prescription for 02, to to your neighborhood welder's supply shop, rent a tank. Buy a regulator that can go to at least 15 lpm (not expensive), and a NON-rebreather mask (Clustermask works great - also not expensive).

I have a lovely, beat up looking tank with regulator and clustermask sitting as a decoration in my living room. I throw a tablecloth over it and add a couple of silk flowers - it's absolutely "charming". My tank is a rental from a welder's supply shop - $56.00 per YEAR. My refills cost me about $17.00. It's the same stuff as medical 02, just don't tell them you plan on breathing the oxygen when you rent the tank. Tell them you are an artist, and are welding a bunch of metal junk together to make the world's most glorious sculpture. ;;D

Get that 02 one way or the other. It's a Godsend.

Sandy

Title: Re: Neoro App't Update - Not a Happy Camper
Post by headbanger45 on Aug 31^st, 2007, 1:24pm

Thanks Guys - I passed Karla's note to UN Solved, sorry he's having a rough time. I'm really nice to the doctors, no really ;;D, but vent here (barks more than bite) - thanks for letting me do that. I have had sleep the last two night and feeling better today.
Chewy - I'm running these names and will let you know how I do with 'em. It's been a reral crappy August - I'm hoping Sept will be better.
Thanks again and PF !
PS - Going dove hunting this weekend and have packed more CH stuff than hunting stuff - Cluster's and shotguns - hell yea........!

Title: Re: Neoro App't Update - Not a Happy Camper
Post by clusterwife on Sep 3^rd, 2007, 11:38pm

Not to miss-inform, I was only kiddin' ya'll. I am not advising anyone to take other's meds.

Title: Re: Neoro App't Update - Not a Happy Camper
Post by txbeck on Sep 9^th, 2007, 12:07am

Headbanger, If Bedford is a reasonable location for you, my Neuro, Scott Hall, has been great, and I did not even need to educate him myself. I do think it helped that I showed up with a headache diary and a good history of what I had tried in the past.

Topamax, with O2 for fallback, has been my best friend ever since.

Not only is Hall familiar with CH but he runs an efficient office and you won't waste a lot of time cooling your heels in his office.