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misee

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Just got O2 ..not sure
Dec 18^th, 2009 at 9:33pm

I have had This cycle of CH for just about 5 months..My dr prescribed me injections and nasal spray(sumatriptan)I am breast feeding my baby so I really was uncomfortable using either one...It got bad and I finally tried the nasal spray and it didnt work well....I was put on verapamil a little over 2 weeks ago. 240mg. I went back to the dr to be checked and my blood pressure was a little low. (I was getting up to get the baby in the middle of the night and felt like I was going to pass out)...so the dr said its not a good idea to up the dose. I haven't felt great since Ive been on it and haven't noticed too much of a change in my headaches. He ordered me o2. I started using it at 7ml and saw no results...tried 10 still nothing. I tried it at 12 and I guess it worked better but within an hour it was back! I'm not sure if I am doing something wrong or if Its just not working for me..I feel like the headaches are coming more often but not as intense...they are waking me up 1-2 times a night and I just don't know what to do! Should I keep trying? Stay on the verapamil? increase the O2?
I get shadow headaches all day long (I think its been since Ive been on the Verapamil)..Ive heard to use the O2 as soon as you feel an attack coming on. Even with the shadow headaches? Thanks for listening...Any advice?

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vica

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Re: Just got O2 ..not sure
Reply #1 - Dec 18^th, 2009 at 10:57pm

I am not a physician so please take this advice accordingly.

The good news is that you CANNOT OVERDOSE THE OXYGEN. You should try the maximum setting that your regulator allows. The caution regarding flow rates is aimed at pulmonary patients because they are usually breathing it for hours. In that case it can irritate the air passageways. We clusterheads are using it for brief periods of time to abort the attack so it is not a concern. The oxygen itself is NOT toxic.

Remember the golden rules:

You need to inhale PURE 100% oxygen, therefore no leaks are allowed. You need non-rebreather mask (one with a bag). If your mask has openings (usually a set of holes on the side) cover them with your finger while inhaling and expose them as you exhale. When you feel that the pain is subsiding DO NOT STOP! Continue with oxygen for few more minutes.

You are making a noble sacrifice by avoiding Imitrex injections. My heart is with you.

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DennisM1045

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Re: Just got O2 ..not sure
Reply #2 - Dec 19^th, 2009 at 12:30pm

Hi Misee,

That's awesome that you are seeing some relieve. Now all you need to do is to dial it in to get the amazing results so many of us are getting.

I'm with vica. Get one the O2 as soon as you feel the pain coming on and crank that sucker up as high as it can go.

You want to hyperventilate if you can. You need a rate that doesn't allow the rebreather bag to totally colapse or overfill.

O2 used correctly will chase the beast away quick. Be sure to stay on till you're completely PF.

Now O2 only supresses the hit and does nothing for the underlying condition. The hit can come back once your O2 blood levels are back to normal. If he does come back, hit him again.

I try really hard to only use O2. Occasionally I back up the O2 with an energy drink. But I don't like to combine them with Verapamil. I only use Imitrex as a last resort.

What kind of mask are you using? Some have reported really good results with the Optimask sold here at CH.com. It seems to make O2 therapy even more effective.

-Dennis-

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Where there is life, there is hope.
Where there is Oxygen, you must use proper caution.
So be safe, don't smoke while using O2. Kill the pain and not yourself.

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Batch

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Re: Just got O2 ..not sure
Reply #3 - Dec 19^th, 2009 at 3:11pm

Hey Misee,

Vica and Dennis are giving you good advice... If a flow rate of 12 to 15 liters/minute is working better to abort your attacks, call your doctor and ask him to up the flow rate with a new Rx for 25 liters/minute.

If he won't do this, you've always got the option of buying your own high flow rate regulator... You can get a good 0-25 liter/minute regulator for under $50 or an excellent 0 to 60 liter/minute regulator for $137... You can order them over the Internet without an Rx... The O2PTIMASK™ kits here at the CH.com store for $27.50 are a good idea as well... It's amazing how a 3-liter reservoir bag helps when you try to take a deep breath...

I've added a couple posts to the thread on Insufficient O2 in the link below. Read through my links and you'll see why the higher flow rates that support hyperventilation will work much faster than flow rates at or below 15 liters/minute.

If used properly at flow rates that support hyperventilation and as early as possible, oxygen therapy should be giving you aborts in an average of 7 minutes...

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

or

You will see an initial increase in the number of cluster headache attacks when you start using oxygen therapy... However, as my posts explain, staying on oxygen after the abort at a flow rate of 10 to 12 liters/minute to bring the total time oxygen time up to 15 to 20 minutes will help prevent re-attacks...

Regarding the use of verapamil at any dosage... particularly as you're breast feeding, it might be best if you discussed the following link on a study done by Dr. Peter Goadsby on this topic...

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

or

I'm with Dennis... I use only oxygen therapy. I've not used any preventatives in over 4 years and only take a rare snort of imitrex nasal spray if I get hit while traveling by air...

Yes... as a chronic I still get hit, but I've been using oxygen therapy at flow rates that support hyperventilation for over 4 years and my attacks are now so mild, most are easily blown away in 2 to 3 minutes with this method...

Take care.

V/R, Batch

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« Last Edit: Dec 19^th, 2009 at 3:12pm by Batch »

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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angela.lambert

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Re: Just got O2 ..not sure
Reply #4 - Dec 19^th, 2009 at 4:39pm

Hit that O2 hard!!! You have the right mask? Non-rebreather? Ask your doc for one, they should give a free disposable wrapped in plastic. I get one every year from the medical center.
If your hits are lessening in severity then the V is working. It won't stop CH, just muffle them.
Use the imitrex tip on the side menu, keep it at a low dosage, but only use it if the O2 isn't working, or if your out of the house.
It's recommended to get your normal sleep in, but you've got a little one, and that's not going to happen! I would suggest Melatonin, but your getting up in the middle of the night.
If you can take a very small dosage, so you won't be groggy in the middle of the night, maybe, just maybe it might help with the night hits. Worth a try once. I think you can by the liquid droppers from any drug or health store. You can take 1mg and see how you feel. I take 9mg during a cycle and stop all my night hits that way.

Keep trying, you'll find your right mix.
Angela

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Bob Greenwood

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Re: Just got O2 ..not sure
Reply #5 - Dec 20^th, 2009 at 5:25am

I agree with these guys. Crank it up and breath hard and fast. Like you just got done running. I went through hell until I got 02. It helped me more than words can say.
Sometimes the CH would be gone in 2 minutes and sometimes 5 minutes, but they went away. BUT I had to get the mask from the CH store with the bag for it to work.

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misee

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Re: Just got O2 ..not sure
Reply #6 - Dec 20^th, 2009 at 8:32pm

Thanks everyone! I do have a non-rebreather mask. It has holes on the side...maybe i need to also try to cover them better. My O2 only goes up to 16 but I cranked it up and I can tell it goes much higher than that. (i actually noticed when I went to shut it down and I turned it the wrong way) I'm going to keep trying. I might look into getting the other mask you all have mentioned O2ptimask, if I can't find relief soon.
Also, thanks for the suggestion to try melatonin. Someone else on here had mentioned that. I'm going to look into it.
You all are so informative~you know your stuff:) Happy holidays everyone...I hope you all enjoy your families.

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Skyhawk5 CH.com Alumnus Offline I love YaBB 1G - SP1! Posts: 1320 Ypsilanti, Mi. USA Gender:	Re: Just got O2 ..not sure Reply #7 - Dec 21^st, 2009 at 12:57am Just to be sure, does your O2 mask have a bag attached to it??? And the holes on the side MUST be closed when taking a breath of O2. Don
Back to top	Though I walk through the valley of the shadow of the Beast , I have O2 so I fear him not. IP Logged

misee CH.com Newbie Offline I Love CH.com! Posts: 9	Re: Just got O2 ..not sure Reply #8 - Dec 21^st, 2009 at 9:47am Yes, it does have a bag attached. I have been covering the little holes with my fingers and hands whille im breathin. Thanks for checking:)
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Skyhawk5

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Re: Just got O2 ..not sure
Reply #9 - Dec 22^nd, 2009 at 10:16pm

Here's a simple test to check your mask for outside air leaks.

With the O2 tank turned OFF and the bag empty, put the mask on and inhale . If the mask is sealed properly you should get suction with no outside air coming in.

If you're getting outside air then you may need to tape (duct tape or similar) the holes shut and lift the mask to exhale.

Don

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

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