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Larry

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For predominantly NIGHT time attacks
Mar 21^st, 2009 at 5:45pm

First of all a brief history. I am 50 yo male and have had these life disrupting headaches for 30 years and always 1 to 2 attacks lasting an average of 6 weeks per year. I have tried every single thing on this and any other web site. I was forced to find a NEW Primary Doctor and actually got one who truly cared and wanted to help. I explained to him that I have tried everything and know of every single treatment out there and that I really didn't want to go through more trial. Oxygen and an Ice Bag with an occasional dose of AXERT was keeping me from insanity. My new Dr. recommended a sleep study. I told him I didn't think that it would help but I had not ever been asked by the old medical people to do that. As it turned out I did have sleep apnea and also a very low oxygen level while asleep. The hospital that did the study set me up with a CPAP machine AND this machine that creates it's own oxygen. Oh my GOD. It has been 3 seasons that potentially could have tripped off a batch of headaches and although I am still on guard I truly believe that I might finally be over these beasts. I know at 50 yo you most likely grow out of them and that being diagnosed with very bad sleep apnea and very low oxygen levels may only be coincidental but ask your health provider to do a sleep study on you if like me your attacks were mostly at sleep.

GOD bless you all and stay STRONG !!

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Brew

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Re: For predominantly NIGHT time attacks
Reply #1 - Mar 21^st, 2009 at 7:19pm

Welcome.

Successful treatment of sleep apnea is a wonderful thing. I started on CPAP therapy in 2000 and it has made a world of difference in my life. It did not, however, rid me of CH. Both my pulmonologist and I had high hopes, but alas, no.

You made the statement that you "know at 50 yo you most likely grow out of them," but that's not necessarily the case. Some people do go into what seems to be eternal remission, and it happens mostly to people over 50. But that's the exception, not the rule.

Anyhow, stick around, grab an oar, and help row this thing. I'm sorry you had to come looking for us, but glad that you found us.

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"I have been asked if I have changed in these past 25 years. No, I am the same. Only more so." --Ayn Rand

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Guiseppi

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Re: For predominantly NIGHT time attacks
Reply #2 - Mar 22^nd, 2009 at 12:19am

I'm about to turn 49 and was so looking forward to turning 50 and growing out of these! Having met and spoke with numerous....ummmm...elder statesmen and women on the board, I've sadly learned there's just no guarantee you'll grow out of them. I haven't given up hope....but neither am I going to get far from my prevents and abortives!

Hoping we're both 2 of the lucky ones and out grow them soon! Wink

Joe

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

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ClusterChuck

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

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Re: For predominantly NIGHT time attacks
Reply #3 - Mar 22^nd, 2009 at 12:41am

Guiseppi wrote on Mar 22^nd, 2009 at 12:19am:

Having met and spoke with numerous....ummmm...elder statesmen and women on the board

Are you talking about me again, Joe???

Just because I have already had my last birthday in my fifties, does NOT mean that I am old! NOR does it mean that I have grown up!

I guess one of these days, I should sit down and figure out what I want to be, when I grow up ...

Anyhow, for THIS over fiftier (is that a word?) they have been getting progressively WORSE, not better!

- - - - - - - - - - - - - - - - - - - - -

Larry, I agree that most sufferers should get checked for sleep apnia. It seems that we, as a group, have a much higher rate of afflicted individuals, than most other groups! A few HAVE had similar results to what you have had, but I was not so lucky. Although, I think the CPAP DOES give me a better night's sleep, It does not stop my nighttime hits.

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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FramCire CH.com Alumnus Offline Life like a froward child must be humored a little Posts: 1710 Bolivar, MO USA Gender:	Re: For predominantly NIGHT time attacks Reply #4 - Mar 22^nd, 2009 at 1:33am CPAP does not create Oxygen. It helps you breathe regular air better. Just want to correct a minor factual error.
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Brew

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Re: For predominantly NIGHT time attacks
Reply #5 - Mar 22^nd, 2009 at 8:19am

FramCire wrote on Mar 22^nd, 2009 at 1:33am:

CPAP does not create Oxygen.

It helps you breathe regular air better.

Just want to correct a minor factual error.

You are correct, Eric. CPAP itself does not create nor concentrate oxygen. But in Larry's defense, there are masks available that have a small port which can be connected either to an O2 tank or an O2 concentrator so that the patient receives both pressurized room air and pure O2. I think that might be what he was talking about.

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"I have been asked if I have changed in these past 25 years. No, I am the same. Only more so." --Ayn Rand

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Marc

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Re: For predominantly NIGHT time attacks
Reply #6 - Mar 22^nd, 2009 at 9:32am

I haven't checked - you guys really sure someone isn't making a hybrid CPAP/O2 Concentrator? Yes, I know that feeding O2 into the CPAP supply line is the normal method of doing both.

In the FWIW category: My younger brother is also a CH'er - started many, many years before I did. He's got REALLY severe apnea and swears that the the machine has made all the difference in the world to him, like 99%. But then, he's 50 and they were tapering down on their own, so....

Marc

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« Last Edit: Mar 22^nd, 2009 at 10:09am by Marc »

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Larry

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Re: For predominantly NIGHT time attacks
Reply #7 - Mar 22^nd, 2009 at 4:35pm

Brew,
I know CPAP does not create oxygen. I have a stand alone unit that creates the oxygen and feeds it through a 1/4" tube into the neck of the tube that goes from the CPAP to the user. I should have been a little more clear because that is very important. Having a low oxygen level when you are sleeping may be an important factor,,,, it is too soon to have a party , but the prospects look good.

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Larry

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Arizona
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Re: For predominantly NIGHT time attacks
Reply #8 - Mar 22^nd, 2009 at 4:44pm

Brew,
Another important thing is the volume. 2 LPM is what the sleep doctor said I should leave mine set at. I live in Arizona and typically would have gotten a 6 week batch of the headaches at either the start of the winter season or at the start of spring. So far so good, the sleep apnea is in check and the low oxygen level at night is taken care of and I am optimistic about the onset of summer because if I can go into and thru July then it would be the first time in 30 years that I made it through those three seasons.

Lar

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Brew

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Re: For predominantly NIGHT time attacks
Reply #9 - Mar 22^nd, 2009 at 9:56pm

Well, let's hope it stays all good and you make it through those three seasons unscathed.

One thing I'd like to point out to anybody reading this is that many times successful treatment of sleep apnea via CPAP will automatically raise pulse-ox levels. During my sleep study some 9 years ago, my serum O2 levels dropped down into the low 80% range untreated. During the CPAP portion of the test, it was up in the 97-99% range with just CPAP - no additional oxygen in the mix. When your airway is open and you're breathing normally, and you have no COPD issues, CPAP alone is all you need.

As to throwing some additional O2 into the mix, I'm glad it's working for you, Larry. Since my waking and sleeping O2 blood saturation levels are 97-99%, I'm not sure how it might help me. I've gotten a good handle on my nighttime hits through the use of melatonin plus my usual preventatives, lithium and methysergide.

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"I have been asked if I have changed in these past 25 years. No, I am the same. Only more so." --Ayn Rand

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