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dannymack

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Been here 8 years . . . first post. LOL
Jul 6^th, 2009 at 6:54pm

I'm Daniel, from Indianapolis . . .

Hello, everyone!

I'm 31, have two boys, recently remarried, and I'm switching to chronic from episodic . . . my cycle is all messed up with two or three a day, for now, and out of Imitrex and no insurance. Not a good combo. LOL Just got done with a Kip 6 and thought I'd keep my mind off it and get on here.

Hope everyone is doing well. Look forward to getting invloved more and talking to all of you who know exactly how I feel. Everyone keep your chin up!

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Iddy CH.com Alumnus Offline Smile Posts: 486 Toronto,Canada Gender:	Re: Been here 8 years . . . first post. LOL Reply #1 - Jul 6^th, 2009 at 7:17pm Hi Daniel,welcome Tell us how you battle the Beast o2 rules! For most of us. All the best Iddy
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Marc Ex Member Gender:	Re: Been here 8 years . . . first post. LOL Reply #2 - Jul 6^th, 2009 at 9:08pm Hi Daniel, Since you've been here that long, you already know about O2 - including welding O2 because it's downright cheap. Do it - you may be amazed. Marc
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dannymack CH.com Newbie Offline I Love CH.com! Posts: 8	Re: Been here 8 years . . . first post. LOL Reply #3 - Jul 6^th, 2009 at 9:39pm Well, I tried it once and got absolutely no relief. Maybe I was doing it wrong . . .? Where would be a good place to get some? BTW, I was born and raised in Texas . . . Good to meet you, Marc.
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dannymack

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Re: Been here 8 years . . . first post. LOL
Reply #4 - Jul 6^th, 2009 at 9:41pm

The only thing working for me right now . . .if I HAD any . . . is Imitrex. No Zomig or any of that When I was on Lithium and Depakote (valproic acid) I would still go through my cycle, but they would max out at MAYBE a three, if that, for the whole cycle. THAT was awesome.

I just need insurance and I can get back on it again, but changing jobs will do that to you . . . Good to meet you!!

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JustNotRight

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Re: Been here 8 years . . . first post. LOL
Reply #5 - Jul 7^th, 2009 at 7:01am

Hi DannyMack and Welcome

I've been in your shoes, the no ins. shoes that is...

Go see your Neuro to see if he has any samples for you and explain your situation with the ins. If he has any samples even the lower 4mg shots will be of help. Most Neuro's still have the samples just in a lower dosage.

Good Luck to you and I hope you get ins. soon, this is one Disease that is REALLY HORRIBLE to go through without ins. and medication.

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Callico

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Re: Been here 8 years . . . first post. LOL
Reply #6 - Jul 7^th, 2009 at 6:00pm

Read the oxygen info button on the left of the page. If used properly with a high enough flow rate most get relief. If it is not done properly you won't get it at all, or at mest minimally.

At the first sign of an attack, before it gets bad, chug down an energy drink as quickly as you can drink it. The Taurene and caffeine combo seems to work pretty well for some of us, and you don't need a prescription. WalMart sells RipIt for about a buck in the deli section. It really doesn't matter which kind you use as long as it has both Taurene and caffeine.

Jerry

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Skyhawk5

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Re: Been here 8 years . . . first post. LOL
Reply #7 - Jul 8^th, 2009 at 12:12am

When you tried O2 it was probably not the current minimum application. Nasal canula's are nearly useless. The current minimum flow rate is 15 LPM, thru a NON-REBREATHER mask.

If you have not used Oxygen in the above way, you don't know what it can do. Many here have said the same thing as you, only to find that with the proper set up it does work.

Medical or Welders O2 is the same O2. If you give it the attention needed to get set up, you too may find some relief from our CH hell.

Once you've decided, all the help you need is here for the asking.....

Don

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« Last Edit: Jul 8^th, 2009 at 12:14am by Skyhawk5 »

Though I walk through the valley of the shadow of the Beast , I have O2 so I fear him not.

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dannymack

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Re: Been here 8 years . . . first post. LOL
Reply #8 - Jul 8^th, 2009 at 8:40am

I'm sure it was a bad setup, then. I don't recall having the mask type you mention, since I recall what it looked like. I've GOT to find a setup that works. This is the first cycle I have been in since getting married seven weeks ago, and my wife is really in shock at the actions and behaviors that coexist with the high level clusters. I warned her all about them, watched the videos, read all the info to her . . . but she wasn't really prepared emotionally to see it first-hand. She wants to help so bad and, like all or our spouses, feels bad that she can't and there's nothing she can do. I've had these for 16 years now, since I was fifteen, so I know what to expect, but she didn't and she's really struggling. BUT . . . I know God is in control, and I will make it through these fpr how ever many more years there are to come! Have any of you been to a convention or other get-together with other clusterheads? I have yet to go, but it would be a great kinship to be able to sit and talk with someone who immediately knows my pain. There HAS to be a great bond there . . .

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Marc

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Re: Been here 8 years . . . first post. LOL
Reply #9 - Jul 8^th, 2009 at 10:26am

I will take Don's comment one step further:

If you have not used O2 at a high enough flow to hyper-ventilate for a few minutes, you don't know what it can do.

I have yet to see anyone in person that can truly hyper-ventilate at less than 20-30 lpm. For me, it takes twice that. At 25lpm, I suck the 3 liter bag empty and still need more with every breath.

I've sent you a PM to talk about ways to do it without insurance.

Marc

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« Last Edit: Jul 8^th, 2009 at 10:27am by Marc »

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dannymack CH.com Newbie Offline I Love CH.com! Posts: 8	Re: Been here 8 years . . . first post. LOL Reply #10 - Jul 9^th, 2009 at 8:51pm This might be a stupid question, but besides flammability caution, is there any risk involved in taking in that much oxygen?
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Todd D

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Re: Been here 8 years . . . first post. LOL
Reply #11 - Jul 10^th, 2009 at 9:09am

Hi Danny,

No insurance sucks, but my O2 is not that expensive, and it works miracles!

You will need a Rx from DR. Find an O2 supplier and explain situation to them. I was able to get 2 "E" size tanks, 15lpm regulator, and a crappy mask for $50/month, $10 to refill tank. What they bill insurance and what they will bill you cash are to very different numbers.

Point your wife to the supporters forum here. It may help her to talk with other supporters. I know this forum has helped me deal with the beast.

I'm know expert, but I am not nearly as concerned about any side effects of O2 versus the Prednisone and Gabapentin my Dr just started me on. I've been on a two martini buzz for two weeks now.

Keep up the fight, don't let the beast beat you down.

PFD

Todd

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Callico

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Re: Been here 8 years . . . first post. LOL
Reply #12 - Jul 10^th, 2009 at 11:46pm

Hi Danny,

There is a convention coming up in just a couple of weeks in St. Louis. July 23-26 or something like that. If you can possibly make it it is lifechanging! To meet someone else who understands what you deal with is phenominal! There will be a couple of guys there who have done a lot of the pioneering work on developing the improved method of O2 usage and you can learn from them first hand. Hope it works for you to make it.

Jerry

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"Political correctness is a doctrine, fostered by a delusional, illogical minority, and rabidly promoted by an unscrupulous mainstream media, which holds forth the proposition that it is entirely possible to pick up a piece of dung by the clean end." Texas A&M Student (unknown)

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