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Cluster Headache Help and Support >> Cluster Headache Specific >> Question about masks
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Message started by Kevinjocjr1 on Aug 11th, 2018 at 3:10pm

Title: Question about masks
Post by Kevinjocjr1 on Aug 11th, 2018 at 3:10pm
Good Afternoon All,

My older optimask was damaged in a recent move, so it's not usable.

I have one of the standard non-rebreathers from the hospital. I've done the taping side hole trick, but the constant removal of the mask is tedious. Especially with the severity/frequency of attacks this cycle.

Has anyone had any luck with removing the mask part, and just using the tube of the standard hospital non-rebeathers?

Thank you for any information. The attacks have migrated from only when I try to sleep to running from around 3pm to 5 am, and I'm trying anything until new optimask can be shipped.

Title: Re: Question about masks
Post by Sean McE on Aug 11th, 2018 at 4:04pm
Hi Kevin, When I'm out and about carrying O2 in my car I don't even use a mask, I just breath straight from the small clear plastic tube.  I set the regulator on 15 lpm (it's highest setting) and pinch the tube between breaths. The medical style regulator is difficult to pinch off all the way off but a Harbor Freight regulator pinches off easy. Works fine for me, I just make sure I don't intake any outside air through my nose. 10 to 15 breaths usually does it. (But not always)
   Hope you've got some other tools in your arsenal...like D3 and/or sumatriptans. Any questions just fire away, someone here will be happy to help.

          Sean

Title: Re: Question about masks
Post by Kevinjocjr1 on Aug 11th, 2018 at 4:09pm
Sadly injections ran out last night. New prescription was submitted, but of course pharmacy has to order, so they won't be here until next week.

Probably show up after the cycle ends. Which had better be soon. In my 5th week now.

I'll try direct from the tube when the next one inevitably hits.

Luckily, nothing yet today, though I've been periodically putting the mask on 3lps for 10-15 all day.

Title: Re: Question about masks
Post by Sean McE on Aug 11th, 2018 at 4:18pm
Kevin, if taking straight from the tube, 3 lpm won't cut it. From a full bag...yep, but not fast enuf if straight from the tube. 15 lpm barely cuts it for me.  Sean

Title: Re: Question about masks
Post by Kevinjocjr1 on Aug 11th, 2018 at 4:20pm
For sure, when I'm in the middle of an attack, it's 15lps all the way.

I'm trying to give myself a little oxygen throughout the day in an attempt to stave off the afternoon attacks I've been getting. That is what has been at 3 lps.

:D

Title: Re: Question about masks
Post by Sean McE on Aug 11th, 2018 at 4:32pm
Not a bad idea, my brother-in-law uses an oxygen generator all night to stave off the night hits with pretty fair success. Won't kill a hit but it seems to prevent em.

Title: Re: Question about masks
Post by Kevinjocjr1 on Aug 11th, 2018 at 5:20pm
It seems to be working I think.

Hopefully I didn't jinx myself.
    Today is the first in 4 days I didn't have a hit between 3-5

Title: Re: Question about masks
Post by Skyhawk5 on Aug 13th, 2018 at 8:44pm
You can get a proper cluster mask on this site at the CH.com store. $25+shp.

Title: Re: Question about masks
Post by Kevinjocjr1 on Aug 14th, 2018 at 7:31am
Yup! It was ordered immediately when I found my old on to be damaged beyond use.

It'll be here today.

Title: Re: Question about masks
Post by Peter510 on Aug 14th, 2018 at 9:16am
Kevin,

Good move....they’re far superior to anything you’ll get elsewhere.

Best,


Peter.

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