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I gave oxygen a try...and... (Read 1893 times)
brittbrat
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I gave oxygen a try...and...
Nov 19th, 2010 at 4:00am
 
2am I woke up with the starting of the "pain" I have gotten to know all too well over the last month. The one the Dr's keep telling me "it's just in your head, its a headache get over it".
I tossed and turned trying to sleep but the pain kept getting worse.
Finally about 2:45 I hit between a 7 and 8 on the pain scale, enough to make me get up in tears holding my head, praying it would get better b/c I'm at work.
I decided to try some oxygen, I figured it couldn't hurt. If the pain got any worse I was going to be in trouble. I didn't want my partner to wake up to me screaming and want to take me to the hospital again, I've been taken enough lately with no results.
After 8 mins on oxygen my pain was down to a 5, tolerable. I was not expecting and results...but was shocked when I noticed a decrease in the pain.
Thanks for everyone who talked and mentioned to try oxygen.
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Brew
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Re: I gave oxygen a try...and...
Reply #1 - Nov 19th, 2010 at 7:32am
 
You actually employ doctors who tell you "it's just in your head, its a headache get over it?"

Wow.
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Guiseppi
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Re: I gave oxygen a try...and...
Reply #2 - Nov 19th, 2010 at 8:37am
 
I have found with oxygen, the faster I get on it, the faster I can abort. DON'T WAIT to get on the 02. A delay of even 3-4 minutes can double my abort time.

Sure glad it's helping, it's been my best friend for many years now!

Joe
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Batch
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Re: I gave oxygen a try...and...
Reply #3 - Nov 19th, 2010 at 9:45am
 
Britt,

Not bad for a first attempt with oxygen therapy.  The first time I tried it at 9 liters/minute it didn't work at all on a high Kip-8 and I gave it 45 minutes.

They had given me a flow meter type regulator like the kind you see on the wall in the ER and hospital rooms with the calibrated plastic tube on top and needle valve to control the flow so I cranked the output up to 15 liters/minute for my second attempt an hour later on another Kip-8. 

That flow rate was only marginally better as it only brought the pain down to a Kip-5 after 25 minutes so I cranked up the flow rate to an estimated 30 liters/minute for the next attack and was rewarded with an abort in 15 minutes.

I finally got what I considered was an effective abort time of 10 minutes to a pain free state with an oxygen flow rate around 45 liters/minute.   

All these cluster headaches were hitting while I was sleeping and I was slow to start the oxygen therapy.  Most were between Kip-5 and Kip-6 before I started the oxygen therapy.  I found that my eye started to water at Kip-6 so that made it easy to calibrate my sensing of the Kip Pain scale. 

It took a while but like so many other oxygen therapy user's I discovered that starting oxygen therapy as early as possible at the first sign of an attack while awake or as soon as I woke up with one resulted in the shortest abort times.

Before I get off the topic of oxygen therapy...  It is very safe...  even at higher flow rates.  I'm an old Navy pilot with over 3000 hours flight time in fighters and all of it was spent breathing 100% oxygen from takeoff to touch down.  Moreover, Navy and Marine Corps pilots have been breathing 100% oxygen this way while flying since 1942 and we all get annual flight physicals with chest X-Rays just to stay in the cockpit. 

I can also assure you that when maneuvering at high Gs, the work load is such that we suck down that 100% oxygen at flow rates of 50 liters/minute and higher.

What flow rate did you use during your first attempt with oxygen therapy and what kind of oxygen mask did they give you?

Most successful oxygen therapy users find that an oxygen flow rate of 15 liters/minute is the minimum required and then it only works effectively for cluster headaches at the lower pain levels if they start early.

The most successful users of oxygen therapy use oxygen flow rates that support hyperventilation.  We've found that 25 liters/minute is the minimum to do that and there are several that use much higher flow rates to achieve very short abort times to a pain free condition.

Nearly all of us use one of the O2PTIMASK™ kits from the CH.com store at the left.  The 3-liter reservoir bag on the O2PTIMASK™ makes it possible to inhale a lung full of oxygen with each breath.  You can't do that with the POS, disposable NRB masks with a 1 liter reservoir bag that the home oxygen therapy providers deliver.

Take care and keep trying the oxygen therapy.

V/R, Batch
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thebbz
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Re: I gave oxygen a try...and...
Reply #4 - Nov 20th, 2010 at 2:16am
 
Quote:
You actually employ doctors who tell you "it's just in your head, its a headache get over it?"

Wow

Gee Brew,
I paid a neuro to tell me,"Take and aspirin and drink a coke." Grin  I think it was 300.00 for 15 minutes.

Jack up the flow, get on it quicker, stay on it 10 minutes after the pain stops....enjoy.
Glad you had results
the bb
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Guiseppi
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Re: I gave oxygen a try...and...
Reply #5 - Nov 20th, 2010 at 10:23am
 
Batch's posts are long, technical and wordy! Grin read them anyways, the man knows of what he speaks. Wink

Joe
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Linda_Howell
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Re: I gave oxygen a try...and...
Reply #6 - Nov 20th, 2010 at 1:18pm
 
I'm with Guiseppi on this point.  If you waited til it hit a 7 or 8...I'm surprised the 02 worked at all.   You must get on it at the first twinge. 

One of our worst frustrations are seeing Dr.s who are clueless about this rare condition of ours.  It may be hard for you to find another Dr. who is knowledgeable...but please try.  A physician who tells you Quote:
it's just in your head, its a headache get over it".
  isn't worth the cost of the paper his license is written on.

Linda
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Ernie Moss aka Wishbone
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Re: I gave oxygen a try...and...
Reply #7 - Nov 22nd, 2010 at 4:56pm
 
Guys I have been a believer and users of O2 of some time including the demand value but that is not my story at this time. In March I suffered a heart attack (full recovery so far thanks) but had to have stents inserted) 4 the first day and 2 two days later. I don't know about you guys but whether or not I am in cycle (I am not chronic)if I lay in a certain position etc. for too long I can get a CH.  Well as fate would have it as I returned from the operating room from the second stents I was hit with about s 5kip CH.  Fortunately my wife was with me knew what was happening (she had already advised the staff I was a CH sufferer)an we had an angel nurse in ICU.  They did not have a non-rebreather mask but did have a mask and she turned the O2 full blast (well over 25lpm)To my surprise I aborted in less than 15 minutes at that level.  I am like Linda and others normally if I wait that long to hit the O2 it takes longer but not this time.  Possibly the drugs in me may have helped I don't know or maybe the fact I was getting heaven only knows how many lpm.  All I can say is never wait a second if you don't have to get on the O2.
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Jimi
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Re: I gave oxygen a try...and...
Reply #8 - Nov 22nd, 2010 at 5:04pm
 
I am sorry to hear about the heart attack Ernie but I am glad to hear that you have made a full recovery with the stents.

Good to hear from you. Smiley
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Guiseppi
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Re: I gave oxygen a try...and...
Reply #9 - Nov 22nd, 2010 at 5:48pm
 
Damn sorry bout the heart but with Jimi, glad you're still here to tell us about it. The higher flow rates are helping some who either had no luck, or just limited luck at the 15 LPM flows. Great to here it left the beast in retreat! Smiley

Joe
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Ernie Moss aka Wishbone
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Re: I gave oxygen a try...and...
Reply #10 - Nov 23rd, 2010 at 10:01am
 
Thanks Jimi and Guiseppi. Of course cardiologist attributed much of blockage 100% in one area and 85% in the other to smoking, he mostly attributed to genes (bad family history). I had had nuclear stress test a year ago and no problem and cholesterol has never been over 130. Dr said he never really paid much attention to either unless they were bad for simply reason of history. One nurse in ICU said she felt anyone with a history should have an arteriogram after age of 40 for people just like me. Of course insurance won't pay for same unless you are having problems, they rather you have a heart attack I guess. Also I was very lucky because the fact of my CH I had O2 in my office and when I felt the heart attach coming on I got on O2 immediately with flow rate of 6 lpm (odd but I had a cannula laying around from when I had ordered a mask).
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Chris H
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Re: I gave oxygen a try...and...
Reply #11 - Nov 23rd, 2010 at 11:17am
 
Ernie, I'd take some care with the O2 and a heart condition. I read recently that O2 may be detrimental during an infarction due to constriction of arterial blood flow. This may not apply to you, but suggest you read up. -Chris

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bejeeber
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Re: I gave oxygen a try...and...
Reply #12 - Nov 23rd, 2010 at 11:45am
 
Just one more clusterhead piping in here about getting on that 02 right at onset - can make the difference between knocking a K8 down to K5, and knocking a K6 down to a K0.  Cool
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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.
bejeeber bejeeber Enter your address line 1 here  
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Brew
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Re: I gave oxygen a try...and...
Reply #13 - Nov 23rd, 2010 at 11:53am
 
There are several other combination CH/cardiac patients around here, and the only thing their docs allow to abort is O2. No triptans.

Go figure.
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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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