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mathieulives

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What my Dr Said
Dec 13^th, 2008 at 6:22am

So, saw the neuro yesterday and he answered some of my questions - wanted to pass it forward take it as you will...

My doc said there's not really a correlation b/t hydration and episodes. - even though drinking plenty of fluids is good for most things. He confirmed O2 works for some (and his dad used to use it for his years ago) but doesn't work for all - and didn't give me an Rx for it (it didn't work for me in the past).

He said verap isn't the type of meds that can cause episodic to chronic, but abortive meds are the kinds of meds that can cause episodic to chronic - especially when used as preemptive meds rather than or in addition to abortive meds - which (preemption) isn't what they're designed for.

He also wanted me to try Maxalt over Imitrex for a while. So far it's worked with less drastic side effects - i've only taken once.

Just thought I'd pass ont he info.

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ClusterChuck

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The BEAST rises again,
and again, and again,
and .

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Re: What my Dr Said
Reply #1 - Dec 13^th, 2008 at 6:48am

Don't believe everything that your doctor tells you. Just because he has PHD after his name does NOT give him all the answers.

Some of what he told you may be right, but I doubt some of it. I would like to see more information about his theories. Are there any write ups in any medical journals to go along with his ideas, or are they his own?

I can't believe he would not give you a prescription for oxygen! THAT is the most side effect free treatment that there is! You said it did not work for you before. So what. Try it again. Let us know exactly how you were using it, and maybe we can come up with some hints to get it to work for you.

Chuck

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CAUTION: Do NOT smoke when using or around oxygen. Oxygen can permeate your clothing or bedding. Wait, before lighting cigarette or flame.

Keep fire extinguisher available, and charged.

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RichardN

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Re: What my Dr Said
Reply #2 - Dec 13^th, 2008 at 8:40am

Ditto what Chuck said,

Many, many here did not find 02 effective when first used. Primarily because they didn't have the proper flow-rate or mask. For instance, after coming here and finding out about 02, I was able to coax a script for 02 from my doc (who had been treated me . . . unsuccessfully . . . for a year). His original script was for 4 lpm through a nasal cannula (the nose thingy) . . . with an 8 lpm regulator . . . that WON'T give you the results you need. You need a minimum 15 lpm regulator (available on ebay for about $40 . . . and a non-rebreather mask (the one with the bag). Even if your insurance won't cover it, 02 is cheap and VERY effective for most of us. I can't use Imitrex (some artery blockage and high cholesterol), so 02 is my only abortive . . . can usually kill him in minutes if used early-on in the attack.

Be Safe, PFDANs

Richard

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I can live with the beast as long as I don't have to "dance" with the bastard.

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fly gas

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Re: What my Dr Said
Reply #3 - Dec 13^th, 2008 at 9:14am

What they said on oxygen, what's he trying to do, save the insurance company money?
Oxygen works or doesn't work fm one headache to another, from one episode to the other, yeah or nay. You have to pound it, some docs don't like that, but read some of the threads on O2, a lot of good experience.
Same with drugs, they'll work, then stop working, then work again.
Just because it didn't work the last time, who knows this time.
A lot of docs and well meaning posters think they know it all.
More often than not, that is not the case.
Keep trying new things, use the list here and your common sense, but there are few who wouldn't suggest you try O2 again, perhaps your GP will write a script for you?
Best of luck,
chris

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Marc

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Re: What my Dr Said
Reply #4 - Dec 13^th, 2008 at 11:15am

I can't stop myself, I just have to chime in here. You need to take a more proactive stance in managing your treatment.

Spend some time reading here and see if you agree with everything your Doctor said. I suspect that you will learn that your Doctor isn’t up to date on managing Cluster Headaches specifically. As you see yourself in some of the posts, you may find treatment options/ideas you haven’t tried – or need to try again.

If Maxalt worked for you, you don’t sound drug resistant. The odds are that oxygen will work this time if applied with the guidelines so prominently talked about here. I wish I had a dollar for every time I’ve heard “Oxygen didn’t work for me before, but WOW am I glad I tried again” – that would include me by the way. Before I get jumped on, I’m NOT saying that it work for everyone, every time. I AM saying that’s it’s damn near a miracle for the vast majority of us.

If it saves a real Clusterhead even one minute of a real K10……..

Respectfully,

Marc

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UnderTheRadar

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Re: What my Dr Said
Reply #5 - Dec 13^th, 2008 at 1:07pm

I'll chime in, too- print out everything in the links to oxygen info and how to properly use it and shove it in your doc's face- and point out that O2 is probably the SAFEST abortive with the least side effects, so there's NO REASON not to try it again and again!!! (and for the record, O2 does not work for me- but my doc would have LOVED for it to work, seeing as how safe it is compared to all the other meds they put us on.)
-Paige

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Remember- double-line the foil, shiny side out.

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Guiseppi CH.com Moderator CH.com Alumnus Offline San Diego to Florida 05-16-2011 Posts: 12063 SAN DIEGO, CALIFORNIA USA Gender:	Re: What my Dr Said Reply #6 - Dec 13^th, 2008 at 1:49pm Sitting down in front of your doctor and saying "fix me" is a recipe for many many painful nights. Your best results will come from educating yourself, and working in partnership with your doctor. Education is power! Guiseppi
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seasonalboomer

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Re: What my Dr Said
Reply #7 - Dec 13^th, 2008 at 9:06pm

My doctor told me the same thing with regard to the O2. It was the first time I ever stood up to a doctor. I brought in all the information and he tried to ignore it - and pass me a couple of imitrex pills. I asked him why he would choose to withhold the "standard" treatment for cluster headaches and force me to endure more pain than was necessary. I asked him to legitimize his decision and he couldn't and finally relinquished the O2 prescription. I wasn't going to leave without it and he knew I was serious.

I don't use preventatives as the abortive options I have (Imitrex/O2) take care of nearly all of my hits. There may be some truth to Imitrex extending my cycles but, to be honest, at this point, if I live to with a couple extra weeks of cycle, but put down my hits within 10 minutes every time, I'll stay in CH land for a couple of extra weeks.

I've also used alternatives as a preventative treatment and have had some success with both Kudzu and RC Seeds.

Don't just take the Doc's word for how YOU should be treated and fight on. He's not living with the pain.

Scott

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Scott

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mathieulives

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Re: What my Dr Said
Reply #8 - Dec 13^th, 2008 at 10:23pm

OK OK OK.. everyone - you all are awesome! Thank you for all your tough love. I've been on this site a few times over the last few years and I agree with you - i'll try again with the O2, with the right mask and regulator, etc... I think my Dr will give me Rx for O2 if I ask for it - no worries.

I've cut down on dairy and it seems to help, i've increase hydration x4 a day (1-2 gallons) which seems to help, even though I live in the bathroom - regardless of what dr says. I took Maxalt today and it suxed, it took like 45 min to kick in at around a k7 while I was in public. - mistake to be in public, nothing too embarassing tho.

Thanks for the smack down everyone! - keep me honest and in the game. I'm not giving up.

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Linda_Howell CH.com Moderator CH.com Alumnus Offline Do not feed the Moderators Posts: 11927 Santa Maria, Ca. Gender:	Re: What my Dr Said Reply #9 - Dec 13^th, 2008 at 10:37pm Quote: I'm not giving up.
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AussieBrian CH.com Hall of Famer Offline CH - It's all in your head! Posts: 3851 Cairns, Qld, Australia Gender:	Re: What my Dr Said Reply #10 - Dec 13^th, 2008 at 10:50pm mathieulives wrote on Dec 13^th, 2008 at 10:23pm: ...i've increase hydration x4 a day (1-2 gallons) which seems to help... Just a note of caution here, mate, because you can drink too much water. Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to or
Back to top	My name is Brian. I'm a ClusterHead and I'm here to help. Email me anytime at briandinkum@yahoo.com IP Logged

MrsT

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Re: What my Dr Said
Reply #11 - Dec 14^th, 2008 at 7:46am

mathieulives wrote on Dec 13^th, 2008 at 10:23pm:

I've cut down on dairy and it seems to help, i've increase hydration x4 a day (1-2 gallons) which seems to help, even though I live in the bathroom - regardless of what dr says.

I'd be extra careful with that much water...........water intoxication HAS happened to a member on this site when "gallons of water" was pushed many years ago. If you're 100% sure that much water is helping, you do need to talk to your doctor to maintain electrolytes (blood test REQUIRED). You don't want to compromise you health while dealing with CH.

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mathieulives CH.com Junior Offline Posts: 57 San Francisco, CA Gender:	Re: What my Dr Said Reply #12 - Dec 15^th, 2008 at 12:45am Less water. Got it. Here's to the painfree periods of the day, cheers.
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AussieBrian CH.com Hall of Famer Offline CH - It's all in your head! Posts: 3851 Cairns, Qld, Australia Gender:	Re: What my Dr Said Reply #13 - Dec 15^th, 2008 at 1:21am Neither of us said less water, mate. We were simply bringing to your attention that some things can be over-done. And here's to pain-free periods any time!!!
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