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tarheel03
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Strange & A Question
« on: Oct 2nd, 2006, 7:30pm » |
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I am probably jinxing myself right now, but something very strange is happening. I had shadows all of last week and finally, wham, I was stabbed in the head during a peaceful night's sleep on Friday night. I figured that was the beginning. It's now Monday and I haven't had another CH since. I feel like in the past, once they start, they don't stop - meaning they come at least once a day. Obviously it's a good thing that I have had three PF days, and I am certainly not complaining...but I am wondering if this sort of behavior has ever happened to anyone else. I guess there is no rhyme or reason to CH most of the time, so this shouldn't come as a surprise. Just strange, and curious to know the group's thoughts. Perhaps I should just stop thinking about it and enjoy being normal while it lasts?
Secondly, I have put off ordering the 02 mainly because I have been in denial and because it costs $ =), but I do need to renew my prescription. I have read a few different things on this board and in my research that say anywhere from 8 liters per min to 15 liters per min...is there a correct answer?
Thank you all!
Meg
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BB
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Re: Strange & A Question
« Reply #1 on: Oct 2nd, 2006, 7:49pm » |
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Hi Meg
Sorry to hear you have this bad headache. I hope you will have more pf days to come. Do read the Board and post questions, you will find knowledge as well as relief here.
First question first: Have you been diagnosed properly by a doctor/neurologist to have CH yet?
If not, thats the first step before anything else.
If yes, order the oxygen now and be ready for the next hit whenever it comes and see how well it works for you. The correct answer for oxygen is : at least 8L/min to work, preferably higher but it depends on the person as to how much works best.
Are you on any other medication?
In the meantime, enjoy your pf days.
All the best.
Annette
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tarheel03
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Re: Strange & A Question
« Reply #2 on: Oct 2nd, 2006, 8:33pm » |
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Thanks Annette! Yes, I have been diagnosed...please see my first post under "getting to know ya" entitled Will there ever be a cure? I should have specified. Thank you for the 02 input.
Take care,
Meg
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E-Double
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Re: Strange & A Question
« Reply #3 on: Oct 2nd, 2006, 8:43pm » |
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O2 is cheaper than all of the meds.
In the long run, even if you have to layit out yurself it is still cheaper than copays adding up
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I can't believe that I have to bang my
Head against this wall again
But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
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Jobette
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Re: Strange & A Question
« Reply #4 on: Oct 2nd, 2006, 8:53pm » |
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 Welcome to OUR TOWN. I have learned to just be thankful for the painfree days. There are no strange questions here because these headaches are strange themselves. I have has a 3 - 4 day break in this cycle, and I was praying that it was over only to find that it had doubled back on me. I have found that out of all the meds that they have given me that oxygen has helped more than anything. I didn't say that it stopped them, but it sure makes them tolerable. It has made a difference. 
Get the oxygen so that you will be ready the next time and don't forget the clustermask (non-rebreather). I use 10 - 12 liters and do not strap the mask on at night. Breathe deeply and let it work. For me it takes about 10 - 20 minutes to get relief. Good luck!!! 
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| « Last Edit: Oct 2nd, 2006, 8:57pm by Jobette » |
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clusterwife
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Re: Strange & A Question
« Reply #5 on: Oct 3rd, 2006, 11:15am » |
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My hubby uses 3 liter/min with a hose that goes directly into both nostrils. He breathes in for 5 and out for a count of 6. Within 15-20 minutes, he's either asleep or up enjoying the pain relief.
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Maybe through me he can find the truth, for I will always try.
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Margi
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Re: Strange & A Question
« Reply #6 on: Oct 3rd, 2006, 11:31am » |
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VERY rare that a clusterhead would find relief at the low a flow rate and delivered through nose cannules. The more successful strategy is a flow rate of at LEAST 8 litres per minute (usually more), delivered through a non-rebreather mask. Your hubby might find quicker relief that way.
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kathy copelin, ch.com 8/8/06
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drivin_blind
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Re: Strange & A Question
« Reply #7 on: Oct 3rd, 2006, 2:16pm » |
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The "pattern" is that there is no pattern. Everybody is different. As soon as you think youv'e figured the pattern out, it will change. It's the nature of the "beast". Take the good days and don't dwell on the bad. (Yeah, listen to me dish out that advise). Dick
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Chonas
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Re: Strange & A Question
« Reply #8 on: Oct 3rd, 2006, 3:08pm » |
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"Obviously it's a good thing that I have had three PF days, and I am certainly not complaining...but I am wondering if this sort of behavior has ever happened to anyone else."
That's the way my cycles always start, the beast briefly appears and then it leaves for some time, it may hit me maybe one or twice a week. This previous period of time, may take me up to 3 weeks, then the cycle begins the way  we all know.
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Here we go again...
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tarheel03
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Re: Strange & A Question
« Reply #9 on: Oct 3rd, 2006, 9:21pm » |
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Thanks all. Shouldn't have jinxed myself - was up at 2 a.m. last night for a quick hour-long battle =). O2 at 10 liters/min to be delivered on Thursday. Thanks again for the thoughts/advice/support.
Meg
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Jonny
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Re: Strange & A Question
« Reply #10 on: Oct 3rd, 2006, 9:28pm » |
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on Oct 3rd, 2006, 9:21pm, tarheel03 wrote:Thanks all. Shouldn't have jinxed myself - was up at 2 a.m. last night for a quick hour-long battle =). O2 at 10 liters/min to be delivered on Thursday. Thanks again for the thoughts/advice/support.
Meg |
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Meg,
Its never a jinx, its the beast and he makes the rules.....scream at the top of your lungs when you are PF because it will make you feel good. (and us)
It took me 30 years chronic to realise this, dont you wait that long to fully enjoy PF without the fear of a stupid ass jinx BS!
Be well.........................jonny
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It is up to YOU to educate yourself and then help your doctor plan your treatment. If you just sit down in front of your doctor and say "make me better" you are setting yourself up for a great deal of pain.
- Guiseppi
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Sean_C
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on Oct 3rd, 2006, 11:15am, clusterwife wrote:| My hubby uses 3 liter/min with a hose that goes directly into both nostrils. He breathes in for 5 and out for a count of 6. Within 15-20 minutes, he's either asleep or up enjoying the pain relief. |
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I read your post on the Supporters Corner, I would of thought differently. Is he properly diagnosed by chance?? Someone who's had TN surgery, would certainly have a doc who knows better than to use that method of oxygen therapy. Last question, how often does he fall asleep during an attack??
Sean.......................................
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| « Last Edit: Oct 3rd, 2006, 9:47pm by Sean_C » |
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George_J
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Re: Strange & A Question
« Reply #12 on: Oct 3rd, 2006, 11:37pm » |
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on Oct 3rd, 2006, 9:28pm, Jonny wrote:
It took me 30 years chronic to realise this, dont you wait that long to fully enjoy PF without the fear of a stupid ass jinx BS!
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Nope. There is no jinx. It's a good thing to talk about it. I think lots of episodics don't stick around here when they're out of cycle just because they're afraid of jinxing themselves. They're missing out, and we're missing their perspectives.
Well, I'm here, and I'm episodic....
HEY BEAST--YOU SUCK!
See? Heh-heh.
Beast can't read, anyway.
George
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Ah! The foreigners put on such airs
Wearing the tangerine suits
And their harlequin eyes.
The pain they inspire
Draws in harmonica melodies
And the feathers of birds
Which flame up at their touch.
It all comes to light in the sheer
Debonair.
(Ellen)
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BB
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Re: Strange & A Question
« Reply #13 on: Oct 4th, 2006, 12:28am » |
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on Oct 3rd, 2006, 11:37pm, georgej wrote:
Beast can't read, anyway.
George
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I CAN !
Annette
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