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KevinC

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GETTING PISSED
Aug 22^nd, 2011 at 12:27pm

Is there anyone out there that can give me a DR in the Northern VA area that will give a prescription for O2? I have been to 4 Dr's now and none of them will do it!! I mean you would think I was asking for pain pills or something. My aunt has lung cancer and I went to her house this weekend and gave the o2 a try and it worked wonders for me!!! I am still new to this whole CH thing. I don't know how the hell you guys have dealt with it for so long and not gone nutz. I have insurance so I am so afraid that when I do find a DR to give me the O2 the insurance is going to turn it down> Any Ideas? You guys have been great!!! please excuse the language and the rage I am just so fed up with these headaches I just want my normal life back!!

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Brew CH.com Sponsor CH.com Alumnus Offline Posts: 14163	Re: GETTING PISSED Reply #1 - Aug 22^nd, 2011 at 12:41pm Check this list and see if there's anyone that might work: Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to or
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Bob Johnson CH.com Alumnus Offline "Only the educated are free." -Epictetus Posts: 5965 Kennett Square, PA (USA) Gender:	Re: GETTING PISSED Reply #2 - Aug 22^nd, 2011 at 1:16pm Would be helpful if you tell us what reasons are being given for the refusal.
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KevinC

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Re: GETTING PISSED
Reply #3 - Aug 22^nd, 2011 at 2:18pm

My first Nero says they have not really heard of it and is not comfortable with it, second said there are to many drugs out there for it... That one came off the OUCH web site.. 3rd said the same as the 1st that they just were not familiar with it enough to prescribe it.... I tried 2 of the names on the list and 1 of the Dr's that was close to me said they had never heard of the O2 treatment and the other in Fredrick keeps going to voice mail. I have left a voice mail so we will see what happens. I have also sent emails to people from this site that are in my area to See what they have to say so maybe I will get a few responses from them. I have got a few replies back saying the emails are no good on a few so I will just keep on with what I have got..

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Brew CH.com Sponsor CH.com Alumnus Offline Posts: 14163	Re: GETTING PISSED Reply #4 - Aug 22^nd, 2011 at 2:53pm Keep in mind that the doctors on the OUCH list are not endorsed by OUCH, but by individual OUCH members. In many cases, that means just ONE OUCH member. Not extremely reliable, but a better place to start than the yellow pages, perhaps.
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Mike NZ CH.com Hall of Famer Offline Oxygen rocks! D3 too! Posts: 3785 Auckland, New Zealand Gender:	Re: GETTING PISSED Reply #5 - Aug 22^nd, 2011 at 4:23pm If a doctor isn't familiar with drugs like verapamil, lithium, imitrex, etc for CH treatment then they don't know enough to tream someone with CHs. Similarly if they haven't heard of using oxygen then they need to also do some refresher training whilst you go elsewhere.
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Re: GETTING PISSED
Reply #6 - Aug 22^nd, 2011 at 4:30pm

Keep in mind that the medical industry is just that...an industry devoted to making money, at least that's how it is now. The docs don't get kick backs for prescribing O2 so they don't want to do it.

Check the ouch list and the yellow pages, make phone calls to the doctors office you think might be of help before hand and ask if they are familiar with the correct treatment of CH.

When you do finally get into see a doctor that you think will help you print this out Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

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and make sure he/she takes the time to read it, after all it is your appointment and you are paying for his/her time.

Good Luck!

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bejeeber

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Re: GETTING PISSED
Reply #7 - Aug 22^nd, 2011 at 5:46pm

Clearly most doctors, including neuros, can be summed up in 3 words:

A-holes, a-holes, a-holes. Angry

Who WOULDN''T be getting pissed in your situation??!! Here you've even tried O2 with great results and everything. Angry

I think if it was me, I'd be seriously considering going the route that many here do - just getting welding O2 without a prescription, since it is reputedly the exact same O2 that the medical supply places provide, it's cheaper than medical O2, and yes insurance often doesn't cover O2 anyway.

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CH according to Bejeeber:

Strictly relying on doctors for CH treatment is often a prescription that will keep you in a whole lot of PAIN. Doctors are WAY behind in many respects, and they are usually completely unaware of the benefits of high flow 100% O2.

There are lots of effective treatments documented at this site. Take matters into your own hands, learn as much as you can here and at clusterbusters.com, put it into practice, then tell this CH beast Jeebs said hello right before you bash him so hard with a swift uppercut knockout punch that his stupid horns go flinging right off.

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wimsey1 CH.com Alumnus Offline I Love CH.com! Posts: 2457 MA Gender:	Re: GETTING PISSED Reply #8 - Aug 23^rd, 2011 at 7:24am I have to agree with Jerry. Get O2 any way you can. Just curious, have you printed out the O2 articles here and brought them to a dr? How about your GP and the articles? It isn't just a neuro that can prescribe. Tough times but you have to be tougher. Persist because its your life at stake here. Blessings. lance
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Marc CH.com Old Timer Offline Posts: 429 TX Gender:	Re: GETTING PISSED Reply #9 - Aug 23^rd, 2011 at 7:52am If you really want it, you can be up and running with O2 this morning, safely, easily and very inexpensively. Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to or Sometimes you just have to take control of things. Marc
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KevinC

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Re: GETTING PISSED
Reply #10 - Aug 23^rd, 2011 at 9:48am

GOOD NEWS!!!!!!! WENT to a Dr yesterday with the papers in hand from CH.com and strong armed him into giving up the prescription. I faxed it over to the place today and hope to have it delivered this afternoon. YOU GUYS ARE THE BEST!!!!!!!!!!!!!!!!!!!!! Next I am going to need some tips on the hole thing>>
Do I still take the Imitrex when I feel the CH coming on and then start the O2?
2nd How do I breath the O2? Fast? Slow? Normal?
When I did it at my aunts house I just took really deep breaths and it seemed to work good. Again thanks for all of your guys help!!!!!

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FramCire

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Re: GETTING PISSED
Reply #11 - Aug 23^rd, 2011 at 12:42pm

I don't know of many doctors who get any "kickbacks" in the united States for prescribing certain drugs. HOWEVER, if you want O2 and you have a diagnosis of CH, i would check with your PCP. If you come with info in hand, they generally are more likely to take heed of it than a specialist who might take an ego hit for having a patient know things he/she doesn't.

Just my opinion.

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You've overstayed your welcome since the day we met but it doesn't seem to matter to you. No medications are your master, nothing makes you fret, it's a helpless feeling having nothing I can do

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bejeeber

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Re: GETTING PISSED
Reply #12 - Aug 23^rd, 2011 at 3:37pm

Hey Kevin, GREAT news about the O2!

I imagine that today you won't have a non rebreather mask or high flow regulator at your disposal since those typically have to be mail ordered.

So with your likely low flow current set up (probably 12 LPM max?) I imagine that deep breathing like you did at your aunt's would be good.

When you have a high liter flow you can hyperventilate the stuff and many of us do that for quickest/most effective abort.

About the imitrex - it's good to just hop on the O2, no imitrex, right at onset and reserve the imitrex for a back up just in case the O2 doesn't work. My experience is even if the O2 isn't going to abort the attack, it will hold it at bay, and if you give up, there will still be time/opportunity to abort with imitrex.

And this can be really helpful - also chug an energy drink or shot like red bull with high caffeine/taurine content right at onset. It can help the O2 work better and keep attacks from reappearing as soon.

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CH according to Bejeeber:

Strictly relying on doctors for CH treatment is often a prescription that will keep you in a whole lot of PAIN. Doctors are WAY behind in many respects, and they are usually completely unaware of the benefits of high flow 100% O2.

There are lots of effective treatments documented at this site. Take matters into your own hands, learn as much as you can here and at clusterbusters.com, put it into practice, then tell this CH beast Jeebs said hello right before you bash him so hard with a swift uppercut knockout punch that his stupid horns go flinging right off.

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JustNotRight

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Re: GETTING PISSED
Reply #13 - Aug 23^rd, 2011 at 4:37pm

FramCire wrote on Aug 23^rd, 2011 at 12:42pm:

I don't know of many doctors who get any "kickbacks" in the united States for prescribing certain drugs. HOWEVER, if you want O2 and you have a diagnosis of CH, i would check with your PCP. If you come with info in hand, they generally are more likely to take heed of it than a specialist who might take an ego hit for having a patient know things he/she doesn't.

Just my opinion.

Just an FYI...
My Father worked for a major pharmaceutical co. for over 25 years and knows about the kickbacks or as they like to call them "Bonuses" Doctors and their practices get for prescribing certain medications.

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Batch

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Re: GETTING PISSED
Reply #14 - Aug 23^rd, 2011 at 10:58pm

Kevin,

Fax or email the following chart to neuro's #1, #2, and #3 along with the following link: Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

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Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

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Tell them they are in serious need of remedial CME on the standards of care and guidelines on the treatment of cluster headache and other trigeminal-autonomic cephalalgias.

Tell them also that all the really good neurologists who are up to speed on treating our disorder prescribe oxygen therapy as the first acute treatment of choice followed by the triptans...

Close the note by saying you've sent this to the two other neurologist who refused to prescribe oxygen therapy and that the first one who calls in a prescription for you wins a Kewpie doll, and if no Rx for oxygen therapy is called in, you've prepared a letter to the American Academy of Neurology requesting a self study course in oxygen therapy for cluster headaches be sent to them along with a new pair of glasses so they can read the article in Neurology Today: 21 January 2010 - Volume 10 - Issue 2 - p 31 titled: Major Study Confirms Efficacy of Oxygen Therapy for Many Cluster Headaches" at the following link: Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

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.

If that doesn't work call the Geisinger Center for Clinical Studies in Wilkes-Barra, PA and ask to participate in their study of the demand valve method of oxygen therapy...

Take care,

V/R, Batch

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You love lots of things if you live around them. But there isn't any woman and there isn't any horse, that’s as lovely as a great airplane. If it's a beautiful fighter, your heart will be ever there

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wimsey1

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Re: GETTING PISSED
Reply #15 - Aug 24^th, 2011 at 7:14am

That's great news! And Jerry is right on but if you have further questions about what to do you can PM Batch above. I think you will find if you start on the O2 it will reduce the pain and abort time. Try the energy drink too. If you are still waiting 15+ minutes to abort then do check out the high flow regulators and possibly the demand flow valves. As to trex, I save it for those hits that just won't abort and those that recur every hour or so. Good luck and God bless. lance

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KevinC

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Re: GETTING PISSED
Reply #16 - Aug 24^th, 2011 at 5:04pm

Wow just got my O2 tank. This thing is huge. It is a H tank I think.7986 liters. I don't think I will run out for a while. I have a regulator that reads up to 15lpm. Is this good for now? Didn't get my mask yet. I get that tomorrow when the respiratory lady comes to show me how to use this thing. But from the looks of this site sounds like I am going to get a lot better advice from you guys..

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Guiseppi

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Re: GETTING PISSED
Reply #17 - Aug 24^th, 2011 at 11:04pm

Just make sure she equips you with a NON RE BREATHER MASK. Absolutely critical. You need to get 100% oxygen to your lungs, at a rate to support hyperventilation. Nasal canulas and re breathers, are guarantees of failure. Angry

There are people on the board who abort at rates as low as 10 LPM. Then there are people who said oxygen didn't work at all at 15 LPM, but kicked ass at 25 LPM and up. It's another trial and error thing. Get on the 02 as soon as you feel the headache precursors. The faster I get on it, the faster the abort! Sure hope it proves the miracle for you it's been for me.

Joe

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"Somebody had to say it" is usually a piss poor excuse to be mean.

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wimsey1

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Re: GETTING PISSED
Reply #18 - Aug 25^th, 2011 at 7:27am

Joe's right, and I'm one who had only pain relief (only!) at 15lpm but found rapid abort at higher levels. If you're mask comes with two ventilatin flaps cover one with another piece of plastic or even tape so only one valve opens and closes when you breathe in and out. Or cover both with tape, and breathe in but remove the mask for exhalation. Then get the optimask or something similar. Good luck and let us know. Blessings. lance

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Mike NZ CH.com Hall of Famer Offline Oxygen rocks! D3 too! Posts: 3785 Auckland, New Zealand Gender:	Re: GETTING PISSED Reply #19 - Aug 25^th, 2011 at 8:23am Also take note of the oxygen info on the left. It is quite possible that the oxygen lady will suggest stuff like a very low flow rate and nose canullas. What is on the oxygen page really does work - I can kill CHs in minutes using this technique.
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