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Cluster Headache Help and Support >> Cluster Headache Specific >> Oxygen Question and Update http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1285860685 Message started by Lauren17 on Sep 30th, 2010 at 11:31am |
Title: Oxygen Question and Update Post by Lauren17 on Sep 30th, 2010 at 11:31am
Figured I'd take the updates and questions off of the Welding Regulator post, since I have all the questions on the regulator itself answered.
First off- that was EASY with all of your help on figuring out the regulator- highly recommend it to everyone. Just to make sure I have this correct: The flow rate just determines how quickly the resevoir bag on the non rebreathing mask fills up, and you breath from the bag. As long as the bag is full when you go to inhale you're fine- is that correct? We had the flow rate really cranked up on the first two aborts, and those worked great. (and when I say really cranked up I mean using 1,000psi in total and running the tank dry-I don't care if it took the entire M tank each time as long as it works-but it does seem like that was wasting o2) Problem is, now that we've backed the flow rate down it doesn't seem to be as effective. It's a high enough flow rate to keep the bag inflated, so I'm not sure if the flow rate is the problem. Also, the mask I ordered from here hasn't arrived yet, so we're still using the cheap $2 one I found. I can see the white disks on the side vents ruffling out from the incoming O2- and that just doesn't seem right- if there is unimpeded flow to the mask when he's not inhaling doesn't that mean what he's exhaling could go right back in the bag? Lucas, my husband, is sitting upright, hyperventalating for 5 minutes, breathing deeply for around 10, and if that isn't effective waiting a while and then trying again. Do we have the technique down correctly? Are we expecting to much? At it's best does it sometimes leave shadows that linger or only keep headaches to a 4? Which, my god, that is a VAST improvement over what he was going through, but if I can increase the O2s effectiveness for him I will. |
Title: Re: Oxygen Question and Update Post by Guiseppi on Sep 30th, 2010 at 12:21pm
Yes, Yes, Yes Yes and no.
AS long as the bag is filling up between breaths, your flow rate is good. Keep turning the flow rate down until it just doesn't fill the bag, then crank it up a whisker, then you're not wasting any. With the cheaper maks, you'll get leakage OUT of the incoming 02, and it won't always vent all of his exhaled air. Try pulling the mask away as he exhales to make sure he's not getting any exhaled air on his next intake. Your technique sounds fine. You're not expecting too much, once you get the technique personalized for him it's almost miraculous how fast the beasty retreats. I drink a Red Bull as I start my 02, it seems to speed the abort time a little. I don't really chug it, just deep breath, little drink, deep breath, little drink! :) I've said it before but it bears repeating, supporters like you are an awesome blessing. Joe |
Title: Re: Oxygen Question and Update Post by Lauren17 on Sep 30th, 2010 at 12:41pm
Thanks Joe, thats really helpful!
What a difference to not go through a cycle alone- we are so so thankful to have found this place and all of you, to not have to do this on our own anymore. I can't even begin to describe how that makes me feel- but I'm sure you all know, you've all felt the same thing! Lucas is three weeks in to his cycle, and it seems to have bounced around a bit more than usual. Sometimes 3 times a day, sometimes 24hours pain free, sometimes shadows most of the day. But his only prescription was Imitrex nasal spray, which works, but now he's trying to minimize it's use. Rebound from using it might account for some of this weird cycle. |
Title: Re: Oxygen Question and Update Post by DennisM1045 on Sep 30th, 2010 at 12:42pm
What Joe said :) Looks like you two are on the right track 8-)
I'd also suggest taping over the holes on the mask. If the butterfly valve doesn't seat right you'll be getting outside air in. He'll then have to lift the mask off his face to exhale. It may explain why when you turned the pressure down it wasn't as effective. The excessive flow rate was keeping positive pressure inside the mask. Another alternative is to get creative with another $2 mask and see if he can fashion it into a mouth tube. I use a mouth tube instead of a mask myself. It has a rebreather bag but instead of a mask over the face I put the tube into my mouth. It simply works better for us guys with facial hair ;) -Dennis- |
Title: Re: Oxygen Question and Update Post by Lauren17 on Sep 30th, 2010 at 1:22pm
Nah, Dennis, I like him cleanshaven better anyway! "Hmmm, mask not working, you say? Well you better shave then!"
I kid of course, but I do think the new mask will help things once it gets here. I put a rush on it and it's already shipped, so hopefully it'll be here soon. I'll talk to him about adjusting hs technique and lifting the mask to exhale till then though! As for me- my job is the easy one, and I do it gladly. Not sure who posted it but someone here said they would drink a gallon of cat piss while rolling in elephant feces if it would make the pain stop. (which made me smile when I had little to smile about at that point, so whoever it was, my thanks for that) but I'll add to that and say that I would do the same if it would stop his pain. You know, someone once joked that Lucas had the easy part when I was in labor with our second daughter, but I disagree. Having watched him struggle with this for years I know that watching the one you love in pain is a special and hellish pain itself. |
Title: Re: Oxygen Question and Update Post by Guiseppi on Sep 30th, 2010 at 5:17pm
You know, someone once joked that Lucas had the easy part when I was in labor with our second daughter, but I disagree. Having watched him struggle with this for years I know that watching the one you love in pain is a special and hellish pain itself.
Bears repeating, we don't always give our supporters the credit they deserve. It'd be so much worse for me to watch Christy go through this, then to just deal with it myself. Joe |
Title: Re: Oxygen Question and Update Post by Callico on Sep 30th, 2010 at 6:12pm Marc wrote on Sep 30th, 2010 at 5:31pm:
No doubt! I'd love to be able to take Linda's problems on myself, and hate to have her see me getting hit. Jerry |
Title: Re: Oxygen Question and Update Post by Lauren17 on Oct 1st, 2010 at 1:07pm
Ah, rough night. 3 HA all 2hrs apart, husband's been up for good since 3:30am. Oxygen seems to be helping, and he's trying to wean off the Imitrex and just use it for emergencies if he can't get to the oxygen in time. I'm reassured by Batch's assertion that oxygen therapy temporarily increases frequency of headaches, but that it dissipates in time. Just read that this morning on an older thread. Gotta trust a size 18 font!
I'm also getting the rest of the components for the PH treatment he discusses. Lucas was already on the magnesium and also feverfew. Question on that if anyone knows- can he sweeten the lemonaide? I stripped my vocal chords once with pure lemon and water trying to get rid of a cough- I am talking couldn't even whisper- not a sound, I lost my voice that badly. So just wondering about that. Curious about melatonin- need to figure out a way to get him some rest at night, but I've been hesitant since it made some people's headaches worse. Not sure we can handle that right now. Lucas's strength, and everyone who deals with these, is astonishing to me. That he could go through hell and yet be more concerned about keeping silent so as not to wake me up is verging on a Herculean will. Not sure I wouldn't wake the entire neighborhood screaming if it was me! And yet I keep telling him to wake me up when he gets one, even if the only help I can give is to make sure he isn't alone in the night with this thing; I would rather do that than be well rested the next day. Sigh, grasping at straws these days, but I looked out the window at work a few hours ago to see a hawk perched on the header rack of my 4runner. Seeing a hawk has always made me smile and filled me with a bit of something I can't describe-pride? pure joy? freedom? I stil can't nail it down- none of those is still quite right. I'm a pretty practical person, but I will take what is given today and choose to see the hawk on the car as a good sign. |
Title: Re: Oxygen Question and Update Post by Lauren17 on Oct 1st, 2010 at 1:20pm
Oh, and just to be clear- I've done my homework on the Melatonin- even printed the post out on it on the second page of the board here- just thought I'd mention that we're still weighing our options on that one is why I put it in my ost.
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Title: Re: Oxygen Question and Update Post by Mike NZ on Oct 1st, 2010 at 6:49pm Lauren17 wrote on Oct 1st, 2010 at 1:07pm:
This paragraph also shows a great relationship in action. One person when in great pain is doing all he can to avoid disrupting the sleep of others. Whilst at the same time the supporter wants to do all she can, even if there is little she can do other than being there. I just wish we didn't have to go through experiences like this. |
Title: Re: Oxygen Question and Update Post by Lauren17 on Oct 1st, 2010 at 10:43pm
Hmm, well dang it, I thought I was onto something there! i guess peak and backing off his Meds has to account for the increase.
Thanks for the kind words mike, I think we have a good thing going and am lucky to have him. Hopefully he'll introduce himself soon- you guys will like him! |
Title: Re: Oxygen Question and Update Post by Agostino Leyre on Oct 2nd, 2010 at 1:03pm Lauren17 wrote on Oct 1st, 2010 at 1:20pm:
Try it, I waited a cycle before trying it and wish I hadn't. Would have saved me a lot of unecessary pain. I all reality, the worst thing that will probably happen is that it doesn't help him at all. I'd try 12mg of melatonin about 45 min to an hour before bed, and if you get lucky, he might actually sleep through the whole night. Edit to add, I've been using it for about 8 years now and it is by far THE BEST prevent I've ever used. |
Title: Re: Oxygen Question and Update Post by Lauren17 on Oct 2nd, 2010 at 3:58pm
And a pain free night! Lucas felt some needle prick tingling around his right eye yesterday evening; new since it was surface sansations where his cluster pain is deeper. Went to sleep and night attacks never came. Woke up, no attack, took a nap even and still nothing today except he says he has a bit of light pressure! Wow!
Who knows what caused this relief, but if it was the hawk that landed on the car yesterday I will suggest you all start duct taping mice to your roofs!!! Haha wishing you all pain free days and nights! |
Title: Re: Oxygen Question and Update Post by D.D. on Oct 22nd, 2010 at 8:55pm
I'm new to the site and am still reading and learning. One thing I found here that worked great for me was the melatonin. Huge difference in night hits. Dropped me from my usuall pain of 8-10 down to 2-5. Much shorter duration also. Good luck, and hope things go well.
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Title: Re: Oxygen Question and Update Post by Lauren17 on Nov 8th, 2010 at 12:11pm
Batch, thanks so much for checking back and the time and effort you put into your response (and research, and all the rest you do!). I've printed out your entire response to put in the notebook for next time- luckily Lucas's cycle ended a few weeks ago. O2 was very effective for him, but I think your suggestions will up his effectiveness with it next time. We will also start on the PH treatment at the start of his cycle- we started it at the end of his cycle, and it coincided with a decrease in the severity and frequency of his headaches, but that could have been the cycle winding down too. But we will most definately be trying it again.
Thank you for all you do, sir! |
Title: Re: Oxygen Question and Update Post by Batch on Nov 8th, 2010 at 12:50pm
Lauren,
You're most welcome. Great news that Lucas's cycle ended with a wimper... I love it when that happens. Take care, V/R, Batch |
Title: Re: Oxygen Question and Update Post by wimsey1 on Nov 9th, 2010 at 7:41am Quote:
Amen to that, and good to hear from you Batch. It wasn't so long ago that you were giving me the same advice and technique. I remember how incredibly amazed and delighted I was to have found an effective means of aborting the beast. O2 became my newest, bestest friend; and still is! Blessings, and thanks! lance |
Title: Re: Oxygen Question and Update Post by Guiseppi on Nov 9th, 2010 at 8:49am
We talk a lot about the depression that can occur with CH, since finding 02 as my abortive, the beast has lost the majority of his "fear factor." It's amazing how it changes your whole outlook! :)
Joe |
Title: Re: Oxygen Question and Update Post by Mike NZ on Nov 9th, 2010 at 2:14pm Guiseppi wrote on Nov 9th, 2010 at 8:49am:
Going from where a CH meant 45-75 minutes of agony just waiting for it to be other to 6-8 minutes actively doing something (oxygen) knowing that it'll be over soon is the game changer. |
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