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Title: Clustermasx Review Post by rextangle on Oct 28th, 2005, 10:32pm Well, first I want to thank Mr. Happy again for sending me a package today. I got a Clustermasx, a modified 540 02 Regulator, a bubbler, tubings, hoses, bags, mouthpiece... the works! I just got to use it for the first time and boy! What a difference! I can't believe I've been using these cheap ass masks all this time with an ass sucking regulator. Anyway, the mask itself it a work of art. Completely padded with inflated plastic around the mouth and nose. A heavy duty exhaust and intake hoses with great valve system. The combination of the Clustermasx and the "Happy 540" is pure magic. It's also important to use a bigger bag attached to the mask! Since you're inhaling nothing but pure oxygen at high flow, you need a bag big enough to keep up! Of course the LPM gauge is useless when using the "Happy 540 regulator", but the tank gauge is still accurate. You need to figure out the flow for yourself. I'm guessing that mine is adjuted to probably 25 LPM, only a guess, but it actually reads 4LPM on the dial. It's perfectly adjusted so that when I'm done exhaling the bag is refilled without the wait. The bubbler is a must since you're gonna be sucking huge amounts of 02, you don't want to dry out your throat. For guitar players, it's like switching from a Pignose amp to a Marshall stack! For those like me, who heavily rely on 02, it's a must! A beast killer... I give it 5 fuckineh out of 5. No cons, all pros! THANK YOU RJ FOR PIMPING MY TANK!!!!;) Praise Wotan Big Time! Rex |
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Title: Re: Clustermasx Review Post by pattik on Oct 28th, 2005, 10:44pm Hey Rexie....it's great to hear that it's working so well for you. I've been thinking about getting one too, so I really appreciate the review. :D Must feel great to have such a good weapon in the arsenal. Patti |
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Title: Re: Clustermasx Review Post by rextangle on Oct 28th, 2005, 10:50pm Go for it Patti, that's stuff's gold! |
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Title: Re: Clustermasx Review Post by Mr. Happy on Oct 29th, 2005, 12:51am on 10/28/05 at 22:44:15, pattik wrote:
Stop thinking and start getting. It isn't dubbed the Mask of the Gods for nothing. Lead the masses to water, and they still balk at having cheap sex. Everybody needs to be using one of these things (http://clustermasx.com). Since vendors aren't allowed to tout their wares here, I'm more than HAPPY to spread the word of even Better O2 Enlightenment. The Clustermasx (http://clustermasx.com) IS the better mouse trap, if you use O2. Don't be fooled by imitations from the Conspiracy. Buy now, and pay double later. Or repent. It's still a NRB. But a Much Better One, developed buy UK Ben, a CHead of consideration and esteem. It has a greatly improved face mask, the check valves are superior, the bag size can be adjusted as needed.....all the Key factors...it's simply the Best O2 util that's come along since the Bic Pen or liquid Prell. Don't take my word for it. WAIT a minute. Take my word for it. Do yourself a favor. And everybody around you. Buy now. Repent later. RJ |
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Title: Re: Clustermasx Review Post by LeLimey on Oct 29th, 2005, 1:42am I won't use anything but a clustermasx ever again? why have lead when you can have gold?! I love the big bag, just being able to keep breathing without waiting for it to refill is perfect and it means you can abort so much quicker too and use so much less o2 you won't believe it! The padded mask is so comfortable, you'll never have to use two hands and be trying to squeeze it to get a good seal again! you get a 100% seal with this and can hold it easily with one hand. It also comes with a mouthpiece for those of you who prefer to breathe through one of those. I personally can't but some people I know rave about that method I also know of people for whom o2 hasn't worked before who now get a benefit from using a clustermasx. One of them posts here occasionally so I'll get her to come along and give her views too. Jasper won't touch an ordinary non re-breather mask, he wouldn't even try one but he took to his clustermasx from day one and uses it without any fuss. Ben should be getting a knighthood if you ask me :) |
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Title: Re: Clustermasx Review Post by rextangle on Oct 29th, 2005, 2:29am Just used it again to kill my 1am... Unreal! Quick and easy... what a breeze... The word needs to get out there. Fuckineh! Rex |
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Title: Re: Clustermasx Review Post by zanychef on Oct 29th, 2005, 2:39am i got mine this week and have found the difference amazing to the standard non-rebreather mask ;;D ;;D its like supercharging a car ;;D ;;Dalso as helen says you use a lot less o2 my little 460l bottle now does about 7 hits instead of the 4-5 i got before! all i can say is buy one!! zany |
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Title: Re: Clustermasx Review Post by Squanto on Oct 29th, 2005, 4:38am I finally got my rig set up today. Clustermasx, 540 reg (unmodified, I think - I'll have to check the little hole), bubbler and a 80 cft welding O2 cylnder. First thing I did was take the small bag off and put on the 2x "supersize" bag. I've used it twice. Once as a test and once to abort a hit. Hardly a fair trial yet . I'll report results of the abort trial on another thread ("My Alternate Thereapy...") But first impressions: 1) I like the comfort of the inflated edges of the mask. 2) The longer tube is VERY helpful. However: 3) Attachment of the "supersize" bag leaves something to be worked on. I"m not happy with the "jury rig" aspect of scrunching down a 12 inch hole onto a les than one inch diameter connector. Seems awfully twisted up the way I did it. 4) At both 10 LPM and at 12LPM it feels like there's resistance to inhalation and exhalation (breathing in and breathing out.) Right on the edge of uncomfortable. Has that "sucking through a straw" feel. The big reservoir bag "breathes" okay. Collasping with breathing in and refilling between breathes. I'd guess the resistance is in the check valve(s). I'll fiddle with the rig some (no destructive changes of course) and try using the mouthpiece (probably need a nose clip for that method) I'll get back to ya'll on that. Overall, I think it's a huge improvement over the standard non-rebreather you'll get from a medical supply shop. I doubt that Ben is making any money on this product - probably going in the hole. Thanks Ben and Mr Happy Squanto |
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Title: Re: Clustermasx Review Post by E-Double on Oct 29th, 2005, 5:29am I gotta jump on this one. Nights like tonight my arsenal was shot. Nothing worked and have to rely on time which seems like forever when you go back to back with long one,intense mothers. So if it is as advertised it might make O2 work again. Stoked! E |
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Title: Re: Clustermasx Review Post by LeLimey on Oct 29th, 2005, 6:09am Eric what have you got to lose except some pain filled time.. and thats not the PF time we're aiming for! Give it a go..I promise you you won't be disappointed. When I first bought my clustermasx it was to please another uk cluster head (Hiya Tommiepoos!) - I really didn't think anything could make O2 any better, I was already having really good results with it and frankly I was dubious but I thought "What the hell?" BLOODY HELL!! It's like comparing chalk and cheese literally. I don't think I could bear the agony of having to use an ordinary non rebreather mask ever again. Just ask yourself why settle for less? I have less than halved the amount of time I take to abort with o2. Half the time, half the o2 more time for me to play the fool.. its I win, I win, I win and as Rex says no con's - all pro's! |
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Title: Re: Clustermasx Review Post by E-Double on Oct 29th, 2005, 6:18am Just ordered the bad boy :) |
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Title: Re: Clustermasx Review Post by ben_uk on Oct 29th, 2005, 6:52am Love this thread you guys, fanx. Re Sqanto:- “Attachment of the "supersize" bag leaves something to be worked on. I"m not happy with the "jury rig" aspect of scrunching down a 12 inch hole onto a les than one inch diameter connector. Seems awfully twisted up the way I did it.” Yep, it can be a fiddle but well worth it as the “scrunching” holds the bag away from the inlet housing, thereby avoiding occlusion. However, you can avoid “the scrunch method” by sealing the open end of the bag and making your own “smaller” opening. “At both 10 LPM and at 12LPM it feels like there's resistance to inhalation and exhalation (breathing in and breathing out.) Right on the edge of uncomfortable. Has that "sucking through a straw" feel. The big reservoir bag "breathes" okay. Collasping with breathing in and refilling between breathes. I'd guess the resistance is in the check valve(s).” -The O2 inlet housing and non return valve come from a standard NRB set up, so the “resistance”is the same but may be more noticeable because of better efficiency. E-Double, Just got your order – it’s in the post today. :o |
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Title: Re: Clustermasx Review Post by Jimmy B. on Oct 29th, 2005, 8:20am He doesn't like anyone to know it & will try his best to hide it...but Randy (Mr. Happy) will do everything in his power to help fellow sufferers. He's gold in my book...BTW...how much is gold going for these days...maybe we can sell him ;;D All hail Mr. Happy, praise Wotan and all that stuff ;) |
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Title: Re: Clustermasx Review Post by rextangle on Oct 29th, 2005, 2:50pm Ben, thank you for designing the mask! You're a genius... Love the simple yet very effective set up! Good going! When I got my 3AM big mofo, it was awsome. Don't get me wrong, the head still hurts, but it never got get to the unbearable level it usually gets too with a cheap ass mask. It remained at a kip3 and killed in 20 minutes! Wow! A chronic "must have"! An episodic "should have"! Praise Wotan! [smiley=bow.gif] |
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Title: Re: Clustermasx Review Post by LeLimey on Oct 29th, 2005, 3:15pm There's no evangelist like a born again clusterhead is there?! ;;D Rex reading your comments is a huge pleasure, I know how good this masx is for me and hearing you give your verdict to and knowing more and more people are getting the benefits is making me really happy. |
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Title: Re: Clustermasx Review Post by Lizzie2 on Oct 29th, 2005, 5:20pm Just ordered one! Really must get one with all these good reports flying around!! I need all the help I can get LOL Thanks for your wonderful work, Ben and Happy! Carrie/Lizzie2 :) |
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Title: Re: Clustermasx Review Post by rextangle on Oct 29th, 2005, 9:29pm Good move Carrie, you won't regret it! Welcome to the Clustermasx club! And thanks Helen for your comments! ;) |
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Title: Re: Clustermasx Review Post by Squanto on Oct 30th, 2005, 4:30am Up-date: I've re-arranged the connection of the 2x supersize bag to the system. Presently, the in-flow resistance is almost nil. However, some out-flow resistance is still apparent. Overall, an improvement. I'm still not satisfied with the bag attachment arrangement I've made. I'll work on it. Squanto |
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Title: Re: Clustermasx Review Post by Mr. Happy on Oct 30th, 2005, 10:52am on 10/30/05 at 04:30:08, Squanto wrote:
Here's a cool trick. When you exhale, Lift the Mask slightly away from your face. It really cuts down on that resistance. After fooling around with different bags and different adherants, it's hard to beat duct tape. Electrical tape and surgical tape work fine, but I always know where the roll of duct tape is located. Rubber bands work too. RJ |
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Title: Re: Clustermasx Review Post by rextangle on Oct 30th, 2005, 8:51pm I don't know where's the resistance coming from... Did you hook up the Masx correctly? With that big of an exhaust, an elephant could blow through it without difficulties.... I don't get it.... Read the little stickers by the check valves and see where the arrows show where the "flow" should go! That might be your problem... If you still have problem, shout and I'll send you a pic. Rex |
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Title: Re: Clustermasx Review Post by rextangle on Oct 30th, 2005, 8:53pm on 10/30/05 at 20:51:34, rextangle wrote:
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Title: Re: Clustermasx Review Post by E-Double on Oct 30th, 2005, 8:58pm on 10/30/05 at 20:51:34, rextangle wrote:
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Title: Re: Clustermasx Review Post by E-Double on Oct 30th, 2005, 9:00pm on 10/30/05 at 20:58:01, E-Double wrote:
Just running up the numbers ;;D |
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Title: Re: Clustermasx Review Post by ozzy on Oct 30th, 2005, 9:16pm It's a numbers game apparently....... ;;D BTW bubbler absolotely necessary? My ass!! Bubblers are for pussies! Use your vocals for grating cheese! Ozzy |
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Title: Re: Clustermasx Review Post by Mr. Happy on Oct 30th, 2005, 9:28pm on 10/30/05 at 21:16:41, ozzy wrote:
Whoa. Dude. Vocals? Grating cheese? Either your meds are better than mine, or you put more _Glue_ in the bag than me. Cheesus, Oz. Jones |
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Title: Re: Clustermasx Review Post by rextangle on Oct 30th, 2005, 9:29pm Ozzy, maybe you don't mind sounding like Joan Rivers after huffing 02... but I do. ;) Rex Eric, even though you're E-Double, there's no need to double your posts.... :o Enjoy the mask when you get it! ;) Rex |
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Title: Re: Clustermasx Review Post by ben_uk on Oct 31st, 2005, 4:16am Re Resistance:- Helen (kindly) test drove a proto-type twin exhaust model. There was an issue about placement of vales – “handling”. What do you say Helen? Was there less resistance? shocked |
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Title: Re: Clustermasx Review Post by LeLimey on Oct 31st, 2005, 4:39am Hi Ben, Regarding the twin exhaust model... yes I suppose there was less resistance but it was more awkward to hold and I kept blocking the thingummy doo dahs (technical term) with my hands as they were in the way of my holding the mask. This actually created MORE resistance so for me at least it was not a better option and I prefer the normal style. I chug o2 at 15 LPM as you know, not a lower flow rate and I can honestly say I don't have a problem with resistance. Love it, love it, love it!! Ben have I told you lately you're my hero by the way? :-* [smiley=inlove.gif] |
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Title: Re: Clustermasx Review Post by Svenn on Nov 1st, 2005, 6:51am Just got one today thnx to a crazy limey called Zanycheff here. THANX A MILL IAN [smiley=laugh.gif] [smiley=laugh.gif] all i can add here today is a big WOW Svenn |
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Title: Re: Clustermasx Review Post by zanychef on Nov 1st, 2005, 8:01am [smiley=stfu.gif] you making me all :-[ ian |
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Title: Re: Clustermasx Review Post by Kateeast on Nov 1st, 2005, 6:18pm When i had the old mask 02 never worked for me and i gave up trying. Then my daughter ordered me a clustermasx and I haven't looked back! I can abort in 10 minutes now and after being shown by the man himself how to get maximum benefit I now use half the 02 I previously did. Its a godsend! |
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Title: Re: Clustermasx Review Post by rextangle on Nov 1st, 2005, 6:40pm I'm glad that more of you are getting the "Mask of the Gods". Finally something that works well for CH! Good going Ben! and thanks again RJ for bringing that up! Rex |
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Title: Re: Clustermasx Review Post by astings on Nov 2nd, 2005, 10:06am Hi Guys I also use the clustermasx and find it a vast improvement on the old crap I used to use. Another benefit I found was to re- inflate the reservoir bag after use, so its the 'primed' ready for the next attack, so you are breathing pure O2 without waiting for the bag to inflate and aborting attacks in under 5 mins (P.s. its takes approx 6/ 8 hours for the bag to deflate) Thanks Ben ;) Tom |
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Title: Re: Clustermasx Review Post by Marc on Nov 2nd, 2005, 10:46pm And yet another resounding endorsement for Ben's Wondermask................ Randy sent me one back in June along with a great 15+ LPM regulator. I WAS one of those people who said the O2 just didn't work well for me. The key word being - "was" This mask made the difference between rocking in agony for 30 minutes hoping that O2 would work, to KNOWING that it will be gone in minutes. The difference is like night and day. In fact, I don't even watch the time anymore. I count 40-50 slow breaths and 95% of the time - it's gone. I've been chronic for almost 9 years and it really, really pisses me off when I think of all of the agony that could have been avoided. If you don’t have one, get one – period. Randy - I still owe you man! Marc |
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Title: Re: Clustermasx Review Post by Mr. Happy on Nov 2nd, 2005, 11:05pm on 11/02/05 at 22:46:16, Marc wrote:
Call me Ben. Ben Khan. You can find me at WWW.Clustermasx.com 24/7. CMasx Pimp and Sex Slave (http://clustermasx.com). RJ |
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Title: Re: Clustermasx Review Post by Beastfodder on Nov 3rd, 2005, 4:42am It's getting bad when you start lusting over a mask you stick on an 02 cylinder. That's how it is for me - new to O2 this cycle, delighted to see it working - and that with a small face mask with tape stuck over the nose holes albeit at up 15 litres per minute from the cyclinder. How can I can one of these in the UK ? |
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Title: Re: Clustermasx Review Post by LeLimey on Nov 3rd, 2005, 6:30am Just answered you on another thread BF but I'll repeat it here for anyone else who wants to know! IM ben_uk if you are in the uk. The price on www.clustermasx.com is set to include postage to the US. Hope this helps! Helen |
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Title: Re: Clustermasx Review Post by pubgirl on Nov 3rd, 2005, 6:36am Just to add my endorsement as I have been using it for two full cycles now: It is as good as everyone says: It aborts faster- less than 10 minutes for me with this mask It uses less 02 to abort It is comfortable to use You have no risk of suffocating while using it I love the tube version as I bite on it while puffing and that somehow helps (reminds me of labour perhaps as it is an Entonox tube) Ben is a genius Wendy |
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Title: Re: Clustermasx Review Post by alleyoop on Nov 3rd, 2005, 11:03pm This is the Rolls Royce of oxygen masks!!! For those who don't know me, I'm a primary chronic and I've been using Ben's mask for a while now. You'll make up the cost of the mask in o2 saved in no time. But the best thing is how quick it works. I recently got hit with a K-8 about 20 minutes from home. By the time I got to the house and the o2, it was all I could do to even see. Grabbed the Clustermasx and started sucking the o2 - aborted in less than 5 minutes!!! :D ..........alley -- one of Ben's faithful!!! |
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Title: Re: Clustermasx Review Post by LeLimey on Nov 4th, 2005, 3:55pm How to abort a hit if you are 4. I thought you might enjoy Jasper's definition of how clusters work. Mummy: So what do you think makes your head hurt? Jasper: There is a monster and it gets into my head. It eats my inside of my head and thats why it hurts Mummy: How does that beast get into your head? Jasper: It's not a beast, it's a monster like the one that chases Harry Potter. Mummy: Well how does the monster get into your head then. Jasper: It gets in through my mouth when I have dinner's I don't like and then it hides. (nice try huh? he thinks he can get away with chocolate and chips for the rest of his life!!) Mummy: So how do you make the monster go away. Jasper: I get my magic mask and breathe and that blows the monster out of my nose and then it can't hurt me anymore. So there you have it, get a clustermasx, its a monster blow job!!! [smiley=laugh.gif] I'm just over the moon I have something that works, that Jasper is willing (and eager) to use and that won't do him any harm as he grows which, with the other meds available, I can't be so sure of. |
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Title: Re: Clustermasx Review Post by Beastfodder on Nov 7th, 2005, 6:20am Wow - next day delivery and what a result. Stopped a hit that night - as good as everyone has said it is. Thanks Ben |
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Title: Re: Clustermasx Review Post by heprat on Nov 7th, 2005, 11:22pm Ben_UK help I'm starting cycle and just ordered a mask...unfortunately my wife ordered one at the same time (I'm out of town and didn't think I could..she did then I did) Anyway how can I cancel one of the orders? PM me please. PS I can't wait to try it |
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Title: Re: Clustermasx Review Post by pattik on Nov 8th, 2005, 4:05pm ;;DMine just arrived today. I'll repost when I can give it a review. Thanks again, Ben. |
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Title: Re: Clustermasx Review Post by rextangle on Nov 8th, 2005, 7:42pm Alright Pattik! keep us posted and... enjoy! |
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Title: Re: Clustermasx Review Post by Lizzie2 on Nov 8th, 2005, 7:59pm Here's what I wrote about it on OUCH UK: Just wanted to post that I got my masx last night before going to work! I'm thrilled! I haven't needed to use it yet (knock on wood....I do take Frova at night many times)...but I showed it to a bunch of people hehe I also had a neuro appt this morning after I got off work, and I showed it to him as well. He bookmarked Ben's site and asked me to report back to him with details on how it was working out for me. I told him that EVERY SINGLE person who's tried it has said it's made all the difference in the world, and that I could tell the same was going to be for me as I did just test it out when over at Randy's house the other day. I also told him that Randy made me a regulator with the flow part drilled out so that it goes to any level, but I doubt I'm the type to need that as my lung capacity is not good, and I rarely drain a reservoir bag at 15LPM - I just needed a better seal for sure! I have to try the regulator with the masx - I think that's totally gonna kick arse...and Randy, if I get an H tank (maybe in a month or so...I have a regulator for that we could maybe drill?) :) Ben...thank you SO MUCH for all you've done And for those who've posted tirelessly about the benefits of this mask! Carrie |
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Title: Re: Clustermasx Review Post by E-Double on Nov 8th, 2005, 8:27pm I got mine too. I'm psyched ( I guess) to try it out. TY |
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Title: Re: Clustermasx Review Post by Jonny on Nov 10th, 2005, 9:29pm Here is the link to Clustermax. http://www.clustermasx.com/ |
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Title: Re: Clustermasx Review Post by Kevin_M on Nov 10th, 2005, 11:01pm I've had the same good results too. Just adding another big endorsement. Thanks Ben Jones too. ;) |
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Title: Re: Clustermasx Review Post by PittsburghJoe on Nov 13th, 2005, 2:14am My main squeeze ordered one for me this week... can't wait to try it out. I've used up 2 e-tanks in the last 3 days, I'll be VERY happy if this save me O2 as well as being a great big gust of pure, sweet oxygen. Looking forward to not having to rely on a crappy old non-rebreather. Thankfully, my O2 supplier got with the program and finally got me a 15 lpm regulator! Now I'm just waiting on the Mask of the Gods... I'll report back when I try it out. Joe |
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Title: Re: Clustermasx Review Post by Mr. Happy on Nov 13th, 2005, 11:27pm on 11/13/05 at 02:14:23, PittsburghJoe wrote:
You should be well satified, Joe.....even by a mask. A bunch of the lime suckers were having contests sometime back: Who could abort the fastest at the lowest lpm. The setup is excellent for that. But not for ME. The selling factor wasn't conservation, it was On Demand. Granted, that took a change in regulator output, (http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=meds;action=display;num=1129654448) but having this mask, with a huge bag, and the ability to refill it in seconds.......ye gods. If there's one complaint I've heard from heavy lunged O2 suckers, it's bag refill time. That can now be avoided. Once you've huffed yourself down from the peak, you can turn that output meter WAY down. Until then, you can get all you need, thanks to the larger bag. Excess or conservation.....it's a win win. 4 out of 5 Resp Therapists agree. About something. RJ |
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Title: Re: Clustermasx Review Post by JoeKen on Nov 14th, 2005, 11:54am :) This reply is aimed mainly at Ben UK and Zanychef - both should know why. I would just like to add my two penn'orth to this thread. I received my Clustermasx some weeks ago and can wholeheartedly endorse all the good reports that everyone else has given it - thanks Ben, from a fellow Yorkshire man. The previous OUCH mask was OK, (so I thought), but it didn't abort all my attacks. The Clustermasx mask has a much higher success rate, but still not 100%, and having read all this thread and connecting threads, I think I may know why. I pass on my thoughts just in case there are other readers who are as slow on the uptake as I am. I think that I read somewhere that the recommended flow rate for oxygen, for it to be effective, is 8 to 12 lpm. I have always run my regulator at 9 lpm, not wanting to waste precious oxygen (comes from my Yorkshire background - waste not, want not). I often found myself sucking the bag empty and responded by slowing down my breathing, or breathing a little less deeply. Being a big guy, I guess that I probably need a bit more than average to fill my lungs. I also have a full face set of whiskers and I often feel the 'chill' of cold air leaking in under the whiskers, particularly towards the end of the intake of breath, unless I press the mask really tight to my face. On my next attack I shall 'turn the wick' up on the regulator so that I have no possibility of sucking the bag dry, and if others are to be believed, (and I'm sure that they are !!), I should reduce the overall consumption of oxygen. BTW anybody got an answer to sealing the mask against a full set of 'face fungus', apart from a razor blade?. Thanks again to Ben - when it is effective, oxygen must be the preferred medication - cheap and fewer side effects - anything that can make it more effective is to be commended. JoeKen. |
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Title: Re: Clustermasx Review Post by rextangle on Nov 14th, 2005, 3:46pm Hey Joe, Have you thought about attaching a bigger bag to your mask? That's what I did, and it makes a big difference. If you do so, crank your regulator to max, and wait til the bag is full.... start huffing and then you can decrease the LPM gauge to your likings. I also got (from Mr. Happy) a modified regulator that would probably go up to 100 LPM if I cranked it all the way. Fills the bag in 3 seconds and for the first 3 minutes, I'm probably inhaling 20 LPM. Then I turn it down so that when I'm finished exhaling the bag is refilled. Works like magic. As far as the whiskers go.... you can either press the mask harder (don't pop it!), or shave all that crap. It'll make you look younger, and you'll get more 02 in your lungs. Practicality over vanity, it's a no brainer. Good luck to you, Rex |
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Title: Re: Clustermasx Review Post by PittsburghJoe on Nov 14th, 2005, 11:38pm Got my Clustermasx today, and even got a couple hits to try it out. Get. This. Now. That is all. Joe |
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Title: Re: Clustermasx Review Post by LeLimey on Nov 15th, 2005, 3:55am Oh Joe, I'm sitting here grinning like a right nutter! I'm so pleased you've got your masx now and I love it when people are so impressed with it. I know how much of a difference it's made for me and I just want everyone else to have one too! Thank you for my first happy smile of the day ;;D |
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Title: Re: Clustermasx Review Post by JoeKen on Nov 15th, 2005, 6:11am :) A bigger bag seems a good idea - does anyone do them 'off the shelf' or can any body point me in the right direction to obtain on in the UK. Can we start a movement to get the Clustermasx prescribed on the NHS - the benefits to them are reduced oxygen consumption definitely, reduced expensive other meds probably, and happier, healthier customers - seems like a 'no-brainer' to me. JoeKen. |
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Title: Re: Clustermasx Review Post by zanychef on Nov 15th, 2005, 6:31am clustermasx IS undertrials and should be availiable on nhs soon ben hopes ;;D ;;D joe i still want to talk to you about imigran :-/ ian edited to add: use as soon as you feel a hit coming on aborts quicker and you use less o2(for all the yorkshiremen in the house ;) [smiley=laugh.gif] [smiley=laugh.gif] ) |
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Title: Re: Clustermasx Review Post by JoeKen on Nov 15th, 2005, 7:19am :) First to LeLimey: - glad that I made you smile - nice to know - I was beginning to think, because of the lack of reaction, that my humour was not much appreciated on this site. Maybe it's because it's a bit unusual I guess. Now to Zanychef: - Hi Ian. Glad to know that Ben and the NHS are talking - hope he gets a better response than most of their customers feel that they do. I fully understand your thinking on my GP prescribing Imigran, but I do not yet want to put him in a position where he feels that I have 'forced his hand'. At the moment I am 'enjoying' a relatively quiet and benign period of CH (shadows only) - keep your fingers crossed that it lasts - and I am learning to manage ok with black coffee, oxygen and fresh air. I would prefer to keep the BNF 'big gun' in reserve until life gets intolerable - at that point I really shan't care who the hell I upset. JoeKen. |
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Title: Re: Clustermasx Review Post by E-Double on Nov 15th, 2005, 7:26am Joe, Although I live in the US, I have learned enough about the UK system from freinds that have to deal with it. It is a fact that the recognized treatment for CH is sumatriptan injectables in the UK. This is per your government. There is no need to threaten your doctor with the big guns but why not get what you are entitled to and what is relatively cheap. If it were the US and you perscribed something other than the approved med, you would then be paying more money. I am not sure if this holds true in the UK. It appears to me that if it were available to you then you could stock up since everyone there gets tons paid for compared to here and you could wind up with an arsenal ready for the future. Good luck!!! Eric |
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Title: Re: Clustermasx Review Post by pubgirl on Nov 15th, 2005, 8:21am on 11/14/05 at 11:54:40, JoeKen wrote:
If your clustermasx came with a mouthtube as well as a mask like mine did, use the tube instead, that's what I use and there is nor problem with "leaking" with that one. r.e. a bigger bag, message ben and ask him but I can't see any reason why you shouldn't have any size bag you like attached. Wendy |
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Title: Re: Clustermasx Review Post by pubgirl on Nov 15th, 2005, 8:26am on 11/15/05 at 07:26:37, E-Double wrote:
Eric (and any UK people reading), this isn't actually accurate. The two abortives recommended in the BNF (the GP prescribing Bible) are Imigran injections and HIGH FLOW RATE OXYGEN. Only the Imigran is licensed but Professor Goadsby worked very hard to get a page on Cluster Headaches in the latest BNF, AND to have that page include 02 therapy as GP's really do use this book to guide their actions. If a GP is asked to refer to their own BNF and further encouraged that the 02 is cheaper, many cave in and prescribe. Wendy |
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Title: Re: Clustermasx Review Post by E-Double on Nov 15th, 2005, 8:29am Damn it! I just fit itnto the sterotype of big mouthed American who doesn't know what he's talking about. However, I will fight to the end ;;D I defer this round to the Brit ;) |
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Title: Re: Clustermasx Review Post by pubgirl on Nov 15th, 2005, 8:32am You're half right though Eric, our GP's are scared of prescribing the 02 because they have mostly never heard of it and the fucking nutters are happier handing out expensive drugs. >:( >:( W |
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Title: Re: Clustermasx Review Post by JoeKen on Nov 15th, 2005, 8:33am :), Aimed mainly at E-Double: - Hi Eric, I think that you may misunderstand the situation in the UK - whilst it is true, in theory, that the UK National Health Service (NHS) provides whatever treatment is required/needed/necessary, in practice it doesn't quite work like that, and it is getting even less so. (worse). All local doctors (GPs) have to work to a budget based on the numbers of patients registered with them. I am not sure what the penalties are but they would be quickly in trouble if they did not stay close to their budget limits. So, even though the NHS Neuro diagnosed CH, he (the Neuro), can't prescribe for me, only recommend - my GP is the only one that can prescribe for me, (unless I am hospitalised, obviously). My guess is that, because my CH is not 'classic', my GP is treating me, with some limited success, as a Migriane sufferer - I stress this is my guess. I also believe, (will someone in the UK please correct me about this point or any of the ones above, if I am wrong), that Imitrex injections are much, much more expensive per dose, in the UK, than any other CH meds. Thanks to you and Ian (zanychef) for your concern. Joeken. |
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Title: Re: Clustermasx Review Post by pubgirl on Nov 15th, 2005, 8:37am JoeKen They are MILES more expensive. I can get you the figures if you want but the drug plus statdose injector pen system and the cases push the cost up into silly money. This is why UK GP's keep pushing the pills as they are much cheaper. The nasals are cheaper too, Zomig nasal is well worth a go to add to your armoury, particularly if you are struggling to keep enough stock of injections as most GP's are very resistant to giving you loads of them Wendy btw, most PCT's work on a policy of not withholding the correct treatment on the basis of cost and as the Imigran injection is the licensed abortive for Ch you can always try quoting this. |
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Title: Re: Clustermasx Review Post by pubgirl on Nov 15th, 2005, 8:40am P.S. JoeKen, did you see my post above about tube and bag? Wendy |
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Title: Re: Clustermasx Review Post by zanychef on Nov 15th, 2005, 8:58am joe i would still talk to your gp about the injections as it would be no good when you need the 'big guns' and you have to wait 1 day to se the doc and a further 2 days for the chemist to get it in as it (they) are not a standard stock item for most. yes they are expensive but the immediate relief is astounding (this from a guy who is going to try seeds), and please remind your doc you are NOT a migraine sufferer but a CLUSTERHEAD (wear the droopy eye with pride) ;) and as such the treatment is different for each and every one of us ;;D ian edited to add: ps my imigran bill for my g.p. is currently over £250 per week and he foots the bill because he has seen me at k8 before( we were playing golf at the time, and it disturbed his game ,maybe he just wants to win for once [smiley=laugh.gif] [smiley=laugh.gif] |
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Title: Re: Clustermasx Review Post by Redrum on Nov 15th, 2005, 10:41am Just got my Masx...2 thumbs up (hope thats not an insult in the old world, is it?) [smiley=laugh.gif] Used it last night and aborted in about 5 minutes woohoo! |
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Title: Re: Clustermasx Review Post by JoeKen on Nov 15th, 2005, 11:26am This reply is aimed mainly at pubgirl. :) Hi Wendy, Thanks for your replies - it seems that our postings seem to spend a long time in the ether before they arrive at their destination, resulting in a lack of chronology when they appear on the Message Board. Would you believe that I am a BSAC qualified SCUBA diver, (note to Eric: - qualification earned the hard way, not by crossing some PADI instructors palm with siver), although I haven't dived for a few years. I initially struggled with the SCUBA demand valve, but finally got to keep it in without continual wretching. I have tried Ben's mouthpiece but suffer with the wretching again. What cured it for me when diving was getting my head under water and seeing the fishes - took my mind off the wretching. I just can't see myself standing with my head in an aquarium to facilitate Ben's mouthpiece, can you - my family already think my antic's when being 'hit' are somewhat strange - they would probably try to get me certified if I tried the aquarium option. As an aside to Eric and Ian, my GP has no problems with prescibing me oxygen (I suspect that we are learning together about CH), and he immediately put me on 10 mg Imigran tablets and then, when I asked to try it in addition, oxygen, both on repeat prescription, so I just 'Call and Collect' as I need it - God bless the NHS, eh Eric, is this what you had in mind? When I asked to try Zomig nasal spray, based on the conference report from Athens in September by Peter Goadsby et al, my GP didn't say "No", he just raised the cost differential between it and tabs and suggested that we 'meet half way' and try the Maxalt Melt wafers (nothing less like a wafer have I ever seen, BTW). To be fair to the GP, (Ian please note), the GP changed my repeat prescription from Sumatriptan to Almotriptan because of the cost, but assured me that if I found the Almotriptan to be any less effective he would immediately put me back on the Sumatriptan - I think that a one person sample trial would find it difficult to distinguish between the two options - anybody else got any evidence to contribute, as I haven't been able to notice any difference. I get the opinion that, if I asked for anything loudly enough, the GP would prescribe, and on that assumption I prefer the dialogue of negotiation rather than coercion (sp?). Thanks again for your interest and concern. JoeKen. |
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Title: Re: Clustermasx Review Post by zanychef on Nov 15th, 2005, 11:37am sure negotiation is a better path i try it too! (sometimes);). I would still like for you to have 1or 2 packs of the 'big guns ' ready and waiting to go though :( (just in case). it seems allthough your doc is reasonable he is still argueing things on cost grounds, i say that cost of meds = a hell of a lot less than either:- 1. a visit to ER and 2.a funeral! and what on earth is a PADI instructor some kind of deformed irish teacher ?;) [smiley=laugh.gif] [smiley=laugh.gif] |
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Title: Re: Clustermasx Review Post by pubgirl on Nov 15th, 2005, 12:08pm Joeken It's a bugger about the mouthpiece as I love it (echoes of childbirth and entonox I think) but I am in a minority on this I think. Time to lose that face fungus! I am a mite confused about the almotriptan prescription as it is just another pill form triptan with limited uses as a result I thought. You are the very first UK sufferer I have ever heard of (and I talk to an awful lot of them!) who has ever been given almotriptan. It is more common in the USA and is called Axert here. Some USA sufferers have had some good short term prevention from it, but I think Frova/Migard has better results if you really have to use a pill form of any of the triptans. Posted elsewhere but useless as aborts due to speed but some value in our armoury for other reasons. If almotriptan is available here as anything other than a pill I would be incredibly interested to know as we still as far as I know only have two triptans in fast delievry form (Imigran and Zomig) Wendy P.S. We are thread hijacking here so if this is going to continue it should be recommenced elsewhere people are looking here for clustermasx info |
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Title: Re: Clustermasx Review Post by zanychef on Nov 15th, 2005, 12:20pm on 11/15/05 at 12:08:16, pubgirl wrote:
my thoughts too shall we use the imigran 100mg thread joeken started? |
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Title: Re: Clustermasx Review Post by rextangle on Nov 15th, 2005, 3:36pm Hi Redrum, Glad to hear that the Clustermasx is working well for you. For anyone who uses oxygen multiple time every day like myself, it's a MUST HAVE, really. You have no idea what you're missing! Please get one. I have nothing to gain by promoting this in case you're wondering, but since I'm chronic, it's the best tool in my arsenal right now, the quickest and most effective remedy. I'm only trying to encourage other people to get one so we can all share the same relief. The Clustermasks: IT ABORTS! AND QUICKLY. My old non-rebreather: USED TO KEEP MY COMPANY DURING AN ATTACK. Enough said, Rex |
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Title: Re: Clustermasx Review Post by JoeKen on Nov 15th, 2005, 4:16pm Aimed mainly at pubgirl and zanychef :) :), I agree on the thread hijacking thoughts, so if we continue, let's revert back to100 mg Triptan thread. I say "if we continue" because I am not sure how much more there is to say. Almotriptan tabs were substituted about 3 or 4 weeks ago, on the grounds of cost, and appear to be as effective as Sumatriptan, which may not be of much interest to 'classic' CH sufferers. The main problem that I have with them are that they are very small round pills, like a mini aspirin, and my usual dose, unless I am in real pain, is half a tablet. Cutting these in half, accurately, is a real pain, (no pun intended), and they tend to crumble also, whereas the Sumatriptan were larger, lozenge shaped, and came with a helpful depressed line halfway along their length. I stick to half a tablet where possible for 2 reasons: - 1) I found by accident (worried about a full tablet when suffering other health problems), that half a tablet was nearly as effective as a full tablet, particularly when followed by oxygen, and 2) in the early days following the CH diagnosis I was exploring the web for possibilities of buying Sumatriptan abroad in case I needed some during a holiday in areas not covered by NHS prescription, and was gobsmacked to see the prices for these tablets - my GP then confirmed that they were indeed expensive (but assured me that I would not be denied them on those grounds, but who knows where the NHS will be next year, or the year after). BTW a nice young lady in a pharmacy at a German airport, when travelling on business, assured me that a normal UK prescription would be filled (medication supplied) by any pharmacy in the EU - nice to know if you are travelling - I have never needed to put this to the test but I'm sure it will be true - can anyone else confirm or refute this? JoeKen. |
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Title: Re: Clustermasx Review Post by zanychef on Nov 15th, 2005, 4:18pm on 11/15/05 at 15:36:57, rextangle wrote:
i can only endorse this statement ;;D ;;D |
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Title: Re: Clustermasx Review Post by E-Double on Nov 15th, 2005, 9:05pm I finally had my opportunity to use it. Actually a few opportunites. WOW!!!!!!!!!!!!!!!!! O2 works again and quick. First one aborted in about 6-7 minutes. Good stuff! Thank you Ben! Eric |
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Title: Re: Clustermasx Review Post by rextangle on Nov 15th, 2005, 9:25pm Good to hear it Eric! Another satisfied customer. Keep enjoying those quick aborts! Vibes up yours! Rex ;) |
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Title: Re: Clustermasx Review Post by E-Double on Nov 18th, 2005, 10:37pm This thing fucking rocks!!! |
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Title: Re: Clustermasx Review Post by zanychef on Nov 19th, 2005, 2:45am isnt there an OUCH hall of fame for someone like Ben?? |
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Title: Re: Clustermasx Review Post by Mr. Happy on Nov 19th, 2005, 3:34am Hall of Fame? Heck, he's still losing money on the mask, and trying to make it up in volume. A better epitaph might be "We hold this mask to be self evident....." That's the ticket. RJ |
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Title: Re: Clustermasx Review Post by E-Double on Nov 19th, 2005, 8:13am Keep spreading the Gospel RJ! |
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Title: Re: Clustermasx Review Post by lionsound on Nov 21st, 2005, 4:30pm Finally I'm getting enough air!!!! :) Had to give the Clustermasx a go today and I switched to the bigger bag and I was breathing much easier. Ever since the start of this pregnancy I've been having trouble getting enough volume out of my old mask. ..and O2 is pretty much all I've got to take. Thank you, Ben!This thing is mint!!! and Thanks infinities to my Clustermasx benEEfactor!! :-* |
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Title: Re: Clustermasx Review Post by rextangle on Nov 21st, 2005, 8:33pm Glad you got one Rori... especially with pregnancy not being able to take meds. I truly believe that anyone who has CH should have one. But if you stick with your old non-rebreather shitmask, don't come crying when oxygen "doesn't work" anymore. A must have, Rex |
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Title: Re: Clustermasx Review Post by Ueli on Nov 21st, 2005, 10:26pm Just to piss on the parade :P On the picture it looks like the Clustermasx is missing an essential part: The Strap. ;) |
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Title: Re: Clustermasx Review Post by Mr. Happy on Nov 22nd, 2005, 12:08am There's no strap due to the very real possibility of suffocation. You have to hold the mask with your damned hand, and that's that. Unless........you've got Yankee Ingenuity, and subscribe to the motto "Any tool can be the Right tool." http://mushys.com/O2/ductmask.jpg |
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Title: Re: Clustermasx Review Post by E-Double on Nov 22nd, 2005, 7:39am [smiley=laugh.gif] Enjoy a good strap on huh [smiley=laugh.gif] |
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Title: Re: Clustermasx Review Post by rextangle on Nov 22nd, 2005, 3:41pm on 11/22/05 at 00:08:28, Mr. Happy wrote:
Wow, I really really don't know what to say there... If you're new to this board, please look away! Please don't do what you see in the pic.... you must remove your glasses before duct taping your face to the mask! Rex |
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Title: Re: Clustermasx Review Post by ben_uk on Nov 22nd, 2005, 8:23pm A male patient is lying in bed in the hospital, wearing an oxygen mask over his mouth and nose, still heavily sedated from a difficult, four hour surgical procedure. A young, student nurse appears to give him a partial sponge bath. “Nurse”, he mumbles, from behind his mask. “Are my testicles black?” Embarrassed, the young nurse replies, “I don’t know, Sir, I’m only here to wash your upper body and feet.” He struggles to ask again, “Nurse, are my testicles black?” Concerned that he may elevate his vitals from worry about his testicles, she overcomes her embarrassment and sheepishly pulls back the covers. She raises his gown, holds his penis in one hand and his testicles in the other, lifting and moving them around. Then she takes a close look and says, ”There’s nothing wrong with them, Sir.” The man pulls off his oxygen a mask, smiles at her and says very slowly, “Thank you very much, that was wonderful, but, listen very, very closely……”Are-my-test-results-back?” [smiley=laugh.gif] |
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Title: Re: Clustermasx Review Post by E-Double on Nov 24th, 2005, 10:12am It even helps with a hangover ;;D Oh boy, too much whiskey last night |
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Title: Re: Clustermasx Review Post by totka2 on Nov 25th, 2005, 9:28pm I tried O2 with nonrebreather mask two yrs ago but it were unsuccessful. I received a Clustermasx (thanks Ben_UK & Mr.Happy) about 2 weeks ago. Since oxygen is not accepted CH treatment here in Hungary so I obtained O2-prescription from my mom (she's suffering from asthma). Insurance Co. sucks. I got the oxygen cylinder this afternoon. I'm on Medrol (100 mg/d) but I have 1-2 hits (between K7 - 10) at night and some shadows by day. I woke up with a K7 but oxygen executed the beast in five minutes. Clustermasx is a wonder. Thanks Ben & Randy. PF ;;D CLUSTERMASX: PERFECT PAINFREE PAINKILLER ;;D |
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Title: Re: Clustermasx Review Post by LeLimey on Dec 8th, 2005, 12:58pm on 11/25/05 at 21:28:47, totka2 wrote:
Its got me through to the end of today.. I can't recommend this masx enough :) |
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Title: Re: Clustermasx Review Post by LeeS on Dec 8th, 2005, 1:09pm This marx sucx! :o The last time I used it was for a night time attack (some 6 six weeks back *YAY*) and it worked so quickly and efficiently that I fell back to sleep within 5 minutes, having forgotten to turn off the (full cylinder) of O2! ::) Keep up the good work Ben 8) -Lee |
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Title: Re: Clustermasx Review Post by zanychef on Dec 9th, 2005, 4:57pm yeh lee i got to agree reallllllll shitty masx innit 3 mins for my last hit and it was aborted no fun left in clusters now lol [smiley=laugh.gif] [smiley=laugh.gif] dont even get time to dance anymore [smiley=laugh.gif] [smiley=laugh.gif] but i do remember to turn my tank off!!!!!!!! ian |
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Title: Re: Clustermasx Review Post by purple on Dec 9th, 2005, 7:29pm If you still ain't got one and you use O2. It should top your xmas list. Been using mine for the last 4 wks. Echo - You use less O2 Just sits on the face soooo good. Cheers Ben! :) Later Neil |
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Title: Re: Clustermasx Review Post by cazman on Dec 9th, 2005, 11:39pm question? i get bad rebounds when i use o2 will this mask fix that or is it me that causes that to happen , ive tried o2 wich took forever to finally get and i was seriuosly pissed when it gave me rebounds . i got a email from someone talking about getting one for my daughter but i thought it was some stupid sales pitch like the billions of others ive gotten i guess it was for real damn im gonna go see if its still in my trash folder it might help her too. ERIC T |
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Title: Re: Clustermasx Review Post by Mr. Happy on Dec 9th, 2005, 11:54pm on 12/09/05 at 23:39:05, cazman wrote:
Rebound arguments aside, get one (http://clustermasx.com) and find out for yourself. Report back with results. You been around here long enough to know Shit from Shinola. Either trust the natives, or commit seppuko immediately. Best wishes. RJ |
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Title: Re: Clustermasx Review Post by Sonnie_Parker on Dec 14th, 2005, 11:02pm I just ordered the clustermasx. Where can I get the larger bag? |
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Title: Re: Clustermasx Review Post by E-Double on Dec 14th, 2005, 11:04pm on 12/14/05 at 23:02:16, Sonnie_Parker wrote:
It'll come with your kit |
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Title: Re: Clustermasx Review Post by pam s on Dec 19th, 2005, 3:53pm I got the masx and am excited about using it, though an episode is not due for a while (and I am going to be SO ready for it!); however, I don't know what a 540 reg is or where to get one. Help, please, and TIA. |
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Title: Re: Clustermasx Review Post by Mr. Happy on Dec 19th, 2005, 5:19pm http://www.mushys.com/pix/540870a.jpg Here's another style of 870: http://www.mushys.com/O2/870.jpg The 870 regulator is for "E" tanks. The 540 regulator is for "H" or "M" tanks, or welding O2 tanks. You can get the regulators on EBay. I keep some of both types on hand. Yell as needed. RJ |
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Title: Re: Clustermasx Review Post by cazman on Dec 20th, 2005, 9:18pm i myself am in pf time now but my daughter is not yeaterday i recived a mask from ben and it was deliverd to my daughter, she had previously tried o2 with the setup i gave her and it didnt help her, today she called me nearly jumping thru the phone .her words " daddy daddy it worked 7 min and it stopped im so happy thankyou daddy " i sit here and to be honest i have tears in my eyes this time they are joyful tears i want to thank you from the bottom of my heart and with great joy for making this possible i cant tell you the shear hell ive been thru watching and hearing my daughter scream in pain and be powerless to stop it. im going to give it a shot if the beast ever shows its face again to me . may god bless you over and over. ill go anywhere and anytime to defend this mask you just name it and im there keep up the great work. |
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Title: Re: Clustermasx Review Post by E-Double on Dec 20th, 2005, 9:20pm Sorry she's suffering but glad she's got the power to now whip it!! It rocks! E |
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Title: Re: Clustermasx Review Post by Mr. Happy on Dec 20th, 2005, 10:18pm on 12/20/05 at 21:18:24, cazman wrote:
Ahhhhh, cazman.......it's moments like yours that _almost_ make it worthwhile hanging around this festering trailer park. Best to your kid. RJ |
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Title: Re: Clustermasx Review Post by Sean_C on Dec 20th, 2005, 11:56pm on 12/20/05 at 21:18:24, cazman wrote:
I'll second that ;) Sean........................... |
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Title: Re: Clustermasx Review Post by pam s on Dec 21st, 2005, 9:59pm on 12/20/05 at 21:18:24, cazman wrote:
Me, too. :-) I know how much it hurts to see your child suffer. Thank God she is finding relief. |
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Title: Re: Clustermasx Review Post by seasonalboomer on Jan 3rd, 2006, 9:37am While I dreaded the arriving need to make use of my Clustermasx I can tell you that this thing is freakin' amazing. Simply stated: ClusterMasx 4, Cluster Headaches 0 [smiley=sayyes.gif] [smiley=sayyes.gif] [smiley=sayyes.gif] Today's analogy, for anyone that ice skates or plays hockey, using it versus the basic non-rebreather you get from the oxygen company is the difference between a really dull pair of ice skates and a nice freshly sharpened set of blades. So huge kudos' to Ben and all that have helped spread the word on this set-up. Hopefully the community can figure out a way to allow peope to continue to acquire these things. |
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Title: Re: Clustermasx Review Post by pattik on Jan 3rd, 2006, 9:59am Thanks for your imput, Booms...I'm happy to not need mine yet, but I rest easier when I read posts like yours. |
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Title: Re: Clustermasx Review Post by Melissa on Jan 3rd, 2006, 10:07am I will second what SB said. The Clustermasx makes a huge difference in the amount of time it takes to kill an attack! It's much much shorter! I will definately vouch for it! :)mel |
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Title: Re: Clustermasx Review Post by zanychef on Jan 6th, 2006, 10:33am bump |
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Title: Re: Clustermasx Review Post by E-Double on Jan 6th, 2006, 11:40am I still can't believe that it works as quick as meds. This thing is amazing!!! Keep it bumped!!! |
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Title: Re: Clustermasx Review Post by teajay5779 on Jan 6th, 2006, 12:14pm got a clustermasx 2 days ago and it was the best investment I've ever made |
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Title: Re: Clustermasx Review Post by snyder on Jan 11th, 2006, 10:44pm I got my Clustermasx a couple of weeks ago. Haven't needed any other abortives since ... no Zomig, no ice, no hot towels, nothing. This thing works for me - big time! Bill |
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Title: Re: Clustermasx Review Post by Pinkfloyd on Jan 12th, 2006, 4:19pm on 12/20/05 at 21:18:24, cazman wrote:
I have to think that if there had been one final wish Caz could have had, it would have been to be able to help his daughter in some way, fight cluster pain. I think it's obvious from this post, one of his last, that he, as a parent, felt some peace in knowing he was leaving his daughter with some significant help. Thanks to all those that helped him find some help, and some peace of mind. Go in peace eric, Bobw |
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Title: Re: Clustermasx Review Post by michellepaul on Jan 15th, 2006, 10:30pm Hi, I'm trying to buy the correct oxygen set up for my husband. I've just ordered the clustermax, but need everything else. Any suggestions? Thanks Michelle Paul |
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Title: Re: Clustermasx Review Post by E-Double on Jan 15th, 2006, 10:39pm on 01/15/06 at 22:30:47, michellepaul wrote:
You might want to start with a perscription from your doctor. It should state 10-15 lpm!!! and size of tanks. I like the E for home ( I get several) and D for my cars If not, post a thread asking about obtaining welder's tank and oxygen. Good luck!! |
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Title: Re: Clustermasx Review Post by michellepaul on Jan 16th, 2006, 1:02am Thanks, I've got the prescription (it's for my husband - he gets the headaches) it says, Oxygen 1 LP/L - Don't know what it means. It doesn't seem to say anything about tank size. |
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Title: Re: Clustermasx Review Post by E-Double on Jan 16th, 2006, 7:25am on 01/16/06 at 01:02:50, michellepaul wrote:
if it says 1, that is WAY to little. HE needs a high flow regulator!!! This means what I stated in prior post. 15 lpm (liters per minute) If having trouble getting that from doctor, give him this: http://www.chhelp.org/mhni.html |
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Title: Re: Clustermasx Review Post by mczoom on Jan 19th, 2006, 7:18pm I am very new to this as my husband was diagnosed with clusters and it took us a year to find where to get the o2 - we are planning to buy the portable cylinder with regulator and non-rebreathing mask (price $280). It has a regulator that is like a knob you can position at the lpm you need. One question - ...how do I know what kind of a regulator is on the unit and which one is better? Please help me understand the regulators. Also, will the cluster mask you are describing fit with any regulator? I will greatly appreciate your help. Olga |
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Title: Re: Clustermasx Review Post by Mr. Happy on Jan 19th, 2006, 8:03pm The Clustermasx (http://clustermasx.com) will fit any O2 regulator. Unfortunately, there is a backorder on one of the parts. They should be available in a week or so. As soon as they become available, ORDER ONE. There are only two types of regulators used for medical grade O2 - 540 and 870: http://www.mushys.com/O2/regulators.jpg Smaller, portable tanks take an 870 regulator. Larger, heavier tanks take a 540. Make sure either type you get has a flow rate of 15 liters per minute or greater. Additional info available on the Oxygen page. (http://www.maplefallswebdesign.com/misc/oxygen/oxygen.htm) Best to rent this stuff until you're familiar and comfortable with O2 equipment. I have to pay for all my O2 stuff.....no coverage......the initial investment is a tad dicey. If you purchase ~one~ portable E tank (680 liters - 870 regulator), you'll be back at the refill center every 48 hours or so. http://www.cramerdeckermedical.com/product.php?product_id=18 Code: MECYL Price: $54.95 Suggest an MM tank (3500 liters - 540 regulator) at about $210 delivered. http://www.cramerdeckermedical.com/product.php?product_id=20 Code: T540MM Price: $184.95 |
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Title: Re: Clustermasx Review Post by Sandy_C on Jan 19th, 2006, 8:11pm I've got my clustermasx and my Mr. Happy 540 right now, sitting on a shelf because I haven't needed it - yet - thank God. I want to say I can't wait to use it, but, I don't want to HAVE to use it. Just knowing it's here, gives me the strength to face my next cycle. Thanks Sandy |
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Title: Re: Clustermasx Review Post by E-Double on Jan 25th, 2006, 10:56pm I just committed a mortal sin........ I fucking stepped on mine and it broke!!!!!! Gonna be a long night >:( Back to A) stuffing my nostril with the hose B) Inhaling directly from the tank C) using an old mask D) Trying the mouth piece Hmmmmmmmmm? Off to by a few more! Eric |
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Title: Re: Clustermasx Review Post by Mr. Happy on Jan 25th, 2006, 11:24pm No worries, Mate! This is a no brainer, and done in a few minutes. Fastest fix - Think baggies. BIG baggies. One, two, three gallon baggies. The thinner and cheaper, the better. Zip lock, as well. Zip it shut. Cut a corner off of one of the opposing corners, big enough for the fitting. Tape the fukker in place. O2 tube goes in the Other opposing corner. Use LOTS of tape. Done. Next fix - Look for a better big bag locally. Oven roaster bags are great, but they crinkle like a bowl of Rice Crispies on steroids. On the bright side, the 24# turkey size holds a LOT of O2. Last fix - Gimme yer address. While moving all the Masx thru the underground network, I inadvertantly wound up with a few spare large bags ripped off from some unwitting recipiant. By sending you one, maybe a few of my soul sins can be shrived. It's just a bag. RJ PS: Even the emergency inhaler worked wonders - http://www.mushys.com/O2/tempmask.jpg 100% O2, all the time. That's the ticket........... |
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Title: What has been your experience for.. Post by Richr8 on Jan 26th, 2006, 1:12am ..delivery time? I ordered mine on th e12th. Nothing yet. I must admit, just increasing to 15LPM from the 8lpm recommended by my doc has helped quite a bit. Rich |
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Title: Re: Clustermasx Review Post by Mr. Happy on Jan 26th, 2006, 1:51am Backordered parts is the problem. They should be available directly. Victory or Death. RJ |
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Title: Re: Clustermasx Review Post by E-Double on Jan 26th, 2006, 3:12am Thanks Jones but it's not the bag but the tremendously comfortable gelatinous mask itself. on 01/25/06 at 22:56:51, E-Double wrote:
Well I fumbled around with the mouth piece. was to clogged to jam to hose up my nose...... Old mask did jack this round......... Ding Ding Ding.............Right from the tank. I recommend inservices be held for this method. Works quick but I still can't get used to it and don't recommend any rookie attempting without a watchful eye |
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Title: Re: Clustermasx Review Post by Pinkfloyd on Jan 26th, 2006, 1:00pm on 01/26/06 at 01:51:52, Mr. Happy wrote:
Now I know you've hit the big time. You sound like the service department at Best Buy. Not only that, you're starting to speak with a British accent [smiley=laugh.gif] I keep being reminded of Sam Wainwright shouting to George Bailey....."plastics man, plastics" The Bees Knees!!! Bobw |
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Title: Re: Clustermasx Review Post by seasonalboomer on Jan 26th, 2006, 1:47pm MARY (overly enthusiastic) Hee-haw! Hello, Sam, how are you? SAM'S VOICE Aw, great. Gee, it's good to hear your voice again. George has stopped, hat in hand, to hear the first greetings. MARY Oh, well, that's awfully sweet of you, Sam. (glances toward door, sees George still there) There's an old friend of yours here. George Bailey. SAM You mean old moss-back George? MARY Yes, old moss-back George. SAM'S VOICE Hee-haw! Put him on. |
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Title: Re: Clustermasx Review Post by Pinkfloyd on Jan 26th, 2006, 2:08pm Hee-Haw....See ya in the funny papers [smiley=laugh.gif] |
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