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        Cluster Headache Help and Support >> Cluster Headache Specific >> What's the deal?
        
(Message started by: dbell on Jun 3^rd, 2006, 5:53pm)

Title: What's the deal?
Post by dbell on Jun 3^rd, 2006, 5:53pm

I've suffered from CH for years and only a few years ago discovered that oxygen works. It has always knocked out the headache and usually the bout as well. Not this time though. Two times this week the oxygen has done little to knock it out, although the pain is reduced when using it. One time it lasted 3-1/2 hrs and last night over 5 hrs. I stayed on the oxygen almost the whole time. The pain never when completely went away, although it was reduced enough to sleep. Today, though, something is different. My neck and ear is tense like it does when the cluster comes in, and has been this way all day. My sinus hurts too. It bled badly the other day as well. The clusters are always bad, but this has been a new experience. I can't have another night like the last one. I don't know if the oxygen is frying my sinuses or what. Has this happened to anyone else? Also I have a question. My sinus always closes when I have one. I usually use a nasal spray to open the sinus before I use the oxygen. Is this necessary? Does the oxygen actually have to get to that sinus? I am clueless.

Title: Re: What's the deal?
Post by marlinsfan on Jun 3^rd, 2006, 5:54pm

I can't answer your q on sinus, but how are you taking O2? Are you using a non-rebreather mask? What flow rate are you using?

Title: Re: What's the deal?
Post by Guiseppi on Jun 3^rd, 2006, 5:58pm

The only thing I can naswer to is the bloody nose. My sinuses dry out from the 02 and will occasionally cause me bloody noses. Especially if I have to use it more then 20 minutes.

The most common problem with 02 failure is too low of a flow rate. Good luck.

Guiseppi

Title: Re: What's the deal?
Post by Bob_Johnson on Jun 3^rd, 2006, 5:59pm

Oxygen will dry out the tissues if not used with a "bubbler", device to add moisture to the flow. If the sinus tissues get too dry they will bleed or become irritated.

Title: Re: What's the deal?
Post by dbell on Jun 3^rd, 2006, 6:04pm

I am not sure what a non rebreather mask is. Mine has a tube that go up each nostril. The flow rate is set at 7 lpm and has always worked in the past. I'll have to check out the accessory that adds moisture, that sounds like that will help.

Title: Re: What's the deal?
Post by marlinsfan on Jun 3^rd, 2006, 6:10pm

That's a canula delivery system. For many of us, the best way is using a non-rebreather mask. The best one can be found here;

http://www.clustermasx.com

You can get cheaper ones at your medical supply store. IT has a mask that covers your nose and mouth, and a reservoir bag that fills up with O2. You breath from the bag, and exhale. It's the best way to get PURE oxygen.

The flow rate I use is 12 liters per minute. 8 LPM has worked for me but takes 15+ minutes, while 12 LPM cuts that down by about 5 minutes.

You can find higher-flow regs on e-bay.

Title: Re: What's the deal?
Post by unsolved1 on Jun 3^rd, 2006, 6:11pm

<--- Check out the "oxygen info" link on your left

UNsolved

Title: Re: What's the deal?
Post by dbell on Jun 3^rd, 2006, 6:26pm

Thanks for the info, I've gotten more info from this site in 10 minutes than from the stupid neurologist I've gone to. You would think he would know this stuff.

Title: Re: What's the deal?
Post by BarbaraD on Jun 3^rd, 2006, 7:19pm

LMAO....

Read some more -- neuro's are NOT experts on CH and most don't know their butt from a hole in the ground. We have to EDUCATE THEM!

On this site you can find out anything you ever wanted to know about CH from many years of research and a lot of people who are going thru exactly what you're going thru.

People here are friendly and someone is around 24/7 to answer questions.

Welcome to Clusterville. Read and Read and then Read some more. There are a lot of new things coming out daily and someone here keeps up with it all.

I hit a can of Red Bull or the coffee pot at the first sign of CH. Then it's the O2. Most of the time I can abort them.

Melatonin at night (I take 12mg) helps get thru the REM sleep and gets you the rest you need to fight during the day. It's worked for a lot of us. I'm chronic and coping nicely as long as I get some rest at night.

Pull up a chair and sit a spell... We're here to help.

Hugs BD

Title: Re: What's the deal?
Post by chewy on Jun 4^th, 2006, 8:48am

Quote:

I am not sure what a non rebreather mask is. Mine has a tube that go up each nostril. The flow rate is set at 7 lpm and has always worked in the past.

Theres your problem.

Click the O2 link and hurry!

Title: Re: What's the deal?
Post by dbell on Jun 4^th, 2006, 7:03pm

Thanks Barbara :). Great tip! I have taken 3 mg of melatonin for many years just to help me sleep on a normal night because I am a major insomniac. I had no idea it was listed as a preventative therapy for CH. I took 9 mg last night and I was pain free all night. I am not sure about the Red Bull though. I have a hard enough time sleeping as it is. I very rarely have an episode during the day (unless I take a nap)

Thanks to all on the o2 tips. I am calling the doc tomorrow to try to get the correct mask and regulator. I am also going to ask about the sumatriptan.

I still have the question about the blocked sinus during the attack though. Does it need to be opened with nasal spray, or is just breathing the o2 enough?

Title: Re: What's the deal?
Post by MJ on Jun 4^th, 2006, 8:36pm

Hi dbell

Regarding sinuses.

In my opinion as far as o2 delivery I would NOT think the affected sinus needs to be opened as the oxygen is absorbed in the blood through the lungs hoewever it gets there should be good enough.

My sinus allways slam shut immediately and opens when CH hit leaves.
Used to use large amounts of sinus sprays years ago untill an infection developed.
The otc sinus sprays are desighned to dry out the membranes and may be the cause of the fryed sinus.
I think most sprays come with a warning that this could happen if used in excess.
I also think that the OTC sprays have a detrimental effect on CH having used them for years long ago. I suspect this may be the case with you.

Title: Re: What's the deal?
Post by kcopelin on Jun 4^th, 2006, 11:25pm

Hey! Glad you found us-O2 questions answered? Canula and low flow rate don't cut it for most-non-rebreather mask+high flow rate=much better chances. O2 gets in through nose and mouth so seems to me that even it that CH side is clogged (which most of us run into) the O2 will work.
Melatonin 9 mg worked really good for me-doesn't for everyone but glad it worked for you!
Welcome home,
Kathy

Title: Re: What's the deal?
Post by Gator on Jun 5^th, 2006, 3:01am

One more thing about pure oxygen. If it hasn't worked in 15 to 20 minutes, it likely will not. It is not recommended to use high flow oxygen for more than 15 to 20 minutes at a time. High flow oxygen for extended periods of time can cause damage to your lungs and can actually be toxic to your body.

Please be careful.