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        New Message Board Archives >> 2004-2005 Getting to Know Ya Posts >> Hi Again!
        
(Message started by: FrankF on Sep 7^th, 2005, 11:28pm)

Title: Hi Again!
Post by FrankF on Sep 7^th, 2005, 11:28pm

I have been an episodic CH sufferer for over 20 years and have visited this website off-and-on since it began around 1997. So I figure I'll re-introduce myself...

After being PF since May 03 the beast is back! I started getting them again in June. At first I tried using up my expired Imitrex injections... then as the supply started running out I tried to make an appointment with my doctor who has cared for my CH for over 20 years.

To my horror, I was told that he had moved and was no longer available. So I made an appointment with a new Family Pactice GP who I saw today (recommended by my wife who thinks he is wonderful because he treated my son's foot warts), and because my insurance company made me do that before seeing a specialist).

I told the doctor I had CH for 20+ years, and told him what works and doesn't work. I told him I am currently using verapamil 240mg X2 per day and Imitrex injections... but the 6 Imitrex injections I have remaining right now will not last a month... even if I double them.

My new doctor agreed to try the prednisone taper for now. And if that doesn't work, he said he will give me a prescription for O2.

I have to give him credit for not being a complete N00b. At least he didn't try to prescribe narcs that don't work. On the down side, he wants blood tests (done) and I get a CT scan of my head (tomorrow) although I doubt it will show brain cancer or a tumor since I have had CH for over 20 years... and I get to lose two hour's work to do it. Oh well... I figure if I at least got prednisone and he renewed my old Imitrex prescription... I might as well play along for now.

I asked him to request a medical exception to the insurance company limits on Imitrex and he said that might be a problem (insurance companies don't like to do that... so he seemed like he won't ask until it is a fucking emergency). So... I have to wait until I am completely out of Imitrex? Then maybe if I beg enough I might be approved for more Imitrex in two weeks? FUCK!

Frank,
(Gone to loot pharmacies for Imitrex)

Title: Re: Hi Again!
Post by marlinsfan on Sep 8^th, 2005, 1:57pm

Frank, welcome back. You new Doc should not wait for Pred to work before he gives you O2. They are different meds: Pred is transitional, O2 is abortive.

O2 should be your first line of defense when the attacks come. It's faster, cheaper and safer than trex. Go back to the doc and demand O2 script. The link on the left can help you out.

Good luck and PF wishes.

Title: Re: Hi Again!
Post by paul_pero on Sep 9^th, 2005, 7:15am

Hi Frank,

I'm sure you are not glad to be back, but anyway welcome back.

Marlinsfan is right. Get a script for O2 as soon as possible. Have you tried it in the last 20yrs? If not go for it. It worked for me this year. 1st pain relief in 14 yrs.

PFDs to you
Paul

Title: Re: Hi Again!
Post by SteCo on Sep 9^th, 2005, 12:21pm

Quote:

O2 should be your first line of defense when the attacks come. It's faster, cheaper and safer than trex. Go back to the doc and demand O2 script. The link on the left can help you out.

Hi Frank,
Ditto on what the above posters said...
Read this and print it and give it to your doc...Insist on it, do not leave w/out it!! as it has provided many with much needed relief!!
http://www.maplefallswebdesign.com/misc/oxygen/oxygen.htm
Pay attention to the high flow regulator and non-rebreather mask..... both important for O2 to work quickly!!

Good Luck!!
SteCo

Title: Re: Hi Again!
Post by FrankF on Sep 9^th, 2005, 9:00pm

I have had O2 prescribed during my last three cycles and it worked well. I also have a 15 lpm regulator and a few non-rebreather masks.

My trouble now is a new doctor who is a N00b. He said he will prescribe it, but suggested I conatct the 02 place (Apria Healthcare), ask for O2, ask them to contact him, and then he will approve it. Totally illegal in California I am told (why didn't he know that ?). So I have to ask him to call them on Monday... not the other way around.

Meanwhile, I have found four Maxalt MLT tabs that expired in 2004 to go with my three (six if I split them) Imitrex injections... to last me until I can get O2 on Tuesday or Wednesday if all goes well.

Title: Re: Hi Again!
Post by LeLimey on Sep 10^th, 2005, 6:06am

Frank if you can get there your local firestation has o2 and several ch'ers have gone to use it before. They will not turn you away although they may ask questions about it afterwards. Its worth knowing!
Your doctor sounds about as much use as a chocolate fireguard.. time for a new one methinks! At least you have done what the ins company wanted so they can't argue with you seeing a specialist now.
Good luck, keep us up to date okay?
Helen

Title: Re: Hi Again!
Post by FrankF on Sep 10^th, 2005, 10:30pm

I have a cluster friend in the town where I live who said last week he has ten O2 tanks. I'm going to fix his virus infested computer tomorrow. Seems like a good trade.