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        Cluster Headache Help and Support >> Medications, Treatments, Therapies >> oxygen with wrong reg? and no mask 
        
(Message started by: cuzzykins on Oct 26^th, 2006, 9:43pm)

Title: oxygen with wrong reg? and no mask
Post by cuzzykins on Oct 26^th, 2006, 9:43pm

WEll got the oxygen today... no mask and the regulater only goes up to #4.. but on the inv says 0-15lpm so i guess #4 is the one i want.. now the issue of no mask.. any suggestions untill i can get one?

Title: Re: oxygen with wrong reg? and no mask
Post by cuzzykins on Oct 26^th, 2006, 9:44pm

oh forgot i did at least get tubes ::)

Title: Re: oxygen with wrong reg? and no mask
Post by TxBasslady on Oct 26^th, 2006, 9:58pm

Can you turn the regulator up to 15? Are you saying the highest # on the dial is 4?

Listen, these people deliver 02 all thru the night here in Texas. If you had a Rx for a non rebreather mask, you need to call them...they'll send someone out to bring you one.

These 02 providers get paid big bux...by the insurance companies. They should bring what you were prescribed.

Never let 'em get away with not taking care of you. What good is the 02...with no mask..or no way to breathe it?

Sorry...not fussin at you..but these prople are paid well..and in fact, work for you..and your ins co.

Jean

Title: Re: oxygen with wrong reg? and no mask
Post by cuzzykins on Oct 26^th, 2006, 10:08pm

No worries didnt take it that way.. the regulator only goes up to #4 which i believe is 15lpm but i will call them tomarrow and confirm that or get a dif regulator ordered.. there was no mask just the tube for the nose. i have just ordered the clustermasx online and hopefully it will come soon.

Title: Re: oxygen with wrong reg? and no mask
Post by Linda_Howell on Oct 27^th, 2006, 9:03pm

If your clustermasx is held up in the mail for any reason PM me with your address and I will send you a non-rebreather. Not as good as clustermasx but it will be a hell of a lot better than nose canula.

I sure don't see the reason why a #4 would be comparable to 15 lpm. A regulator should say what it is in English. >:(

Linda

Title: Re: oxygen with wrong reg? and no mask
Post by kcopelin on Oct 28^th, 2006, 10:00am

I ended up buying my own regulator becasue the neuro RXd 10-15 ml and the pulminologist (VA) who had never seen me nixed it. A good friend of mine gave me a clustermasx that was donated at the convention. The O2 company made me keep the useless regulator and re-breather mask, and canula-go figure [smiley=huh.gif]
Hope they straighten this out and your masx gets there pronto.
kathy

Title: Re: oxygen with wrong reg? and no mask
Post by cuzzykins on Oct 29^th, 2006, 6:26pm

3 days pf after the oxygen arrived.. had to test it last nite.. didnt see the post about puttin the tube in mouth to breath so did it trad. way.. actually kept it at a low enough pain level to make it through in 1/2 hour.. however.. after taking this treatment last nite i immediately notice my nose running and also plugged up.. chest congestion as well.. slept well after my usual 90mg melatonin but awoke with horrible cough.. any chance theO2 had something to do with this or just a coincidence and i now am getting bronchitis??? WTF is next????

Title: Re: oxygen with wrong reg? and no mask
Post by cuzzykins on Oct 30^th, 2006, 9:48pm

Just an FYI... got the right regulator today up to 15lpm and a non rebreather mask.. still waiting on the clustermasx but im sure this will help until it arrives.. thanks to all that replied.. when i called the oxygen company this morning they said they didnt think they could get it out to me today.. i said oh yes you can!! It was waiting for me when i got home from work.. dont take no crap right?? Right!! :o)

Title: Re: oxygen with wrong reg? and no mask
Post by roy21302 on Oct 31^st, 2006, 3:45pm

So glad to hear that you have got sorted out, hope your cluster masx arrives soon, I ahve found O2 only recently and it the best thing since sliced bread. Really thinking of you and wishing you good luck and PF days with the O2 Cheers Roy :)

Title: Re: oxygen with wrong reg? and no mask
Post by FramCire on Oct 31^st, 2006, 5:26pm

on 10/29/06 at 18:26:07, cuzzykins wrote:

Im glad the non-rebreather is helping. Clustermasx will help even more.

Please tell me it is a typo that you take 90mg of melatonin.... we can all assume it should read 9mg, right?

Title: Re: oxygen with wrong reg? and no mask
Post by E-Double on Oct 31^st, 2006, 9:49pm

Great minds Eric........

I read the samething and thought it was either 9mg or 90mcg.

Eric(the first one lol)

Title: Re: oxygen with wrong reg? and no mask
Post by Jonny on Oct 31^st, 2006, 9:26pm

on 10/29/06 at 18:26:07, cuzzykins wrote:

chest congestion as well.. slept well after my usual 90mg melatonin but awoke with horrible cough.. any chance theO2 had something to do with this or just a coincidence and i now am getting bronchitis??? WTF is next????

Invest $5 dollars in a 02 humidifier, it will save your lungs and throat from dryness hell.

You can get it at an medical supply store.

Title: Re: oxygen with wrong reg? and no mask
Post by Turts on Oct 31^st, 2006, 9:52pm

where can I get a clustermasx

I have been using the normal hospital grade mask, covers mouth, nose and has the exit hoses on either side of the nose piece.

It works, but im sure a non rebreather would work better
I searched the web and funnily enough it directed me back here.
Please advise

Turts

Title: Re: oxygen with wrong reg? and no mask
Post by cuzzykins on Nov 3^rd, 2006, 10:29pm

HAHAHAHAHA oh my!!! yes i meant 9mg ... talk about comaville [smiley=laugh.gif] hmmm might be an improvement over clusterville tho eh? ok the clustermasx arrived the other day.. had to put it together according to pics but really wasnt that diff.. it was good timing too as i got a bad hit that same nite .. it works quite well and is 25bucks well spent.. think the humidifier thing sounds like a good idea.. noticed very dry mouth and my lips are killing me.. tho could be the bronchitis im fighting as well and having to breath through my mouth alot lol..

Turts.. here is the link i used to order the clustermasx http://homepages.nildram.co.uk/~tritech2/clusterx/index.html

I am now just using the O2 for abortive as the imitrex n/s seems to make them horribly worse immediately.. as long as the O2 is working I guess thats a plus.. last nite i experienced a first for me.. after aborting at 2:30 AM with the O2 i had another hit in about 20 mins.. had to go back on the O2.. was back to sleep by 3 so i was ok with that.. then got hit again at 4:30.. first time i have had more then 1 the same nite like that.. everchanging i know.. i am now tapering up the verapamil at 360mg on my way to 480 most likely.. down to 5mg pred.. been nearly 3 weeks on the pred.. hope i dont have to go back up.. really dont want to.. doc doesnt either but with the bronchitis and breathing issues that might be a possiblity.. the melatonin might need to be adjusted.. thinking i will maybe try none tonite or maybe i need to go up to 12mg??? i know more isnt always better just hard to know which way to go..

AS always thanks for listening and the always welcome advice/suggestions..

Deb

Title: Re: oxygen with wrong reg? and no mask
Post by TxBasslady on Nov 4^th, 2006, 1:37am

Deb,

I've gotten those extra hits after using the 02 also.

You might try to stay on it just a bit longer...at a lower flow rate. This seems to help me. When the pain is gone...turn down the regulator to about 3 or 4 ...breathe normally for another 3-4 minutes..and see if that helps.

I don't use a humidifier...cause I'm not on the 02 long enough to justify using one.

Glad to hear you got a Clustermasx... ;;D

Best wishes to you...

Jean

Title: Re: oxygen with wrong reg? and no mask
Post by snyder on Dec 3^rd, 2006, 11:07am

The clustermasx link http://homepages.nildram.co.uk/~tritech2/clusterx/index.html seems to be "not found" today. Anyone know what's up with it?
Bill

Title: Re: oxygen with wrong reg? and no mask
Post by nani on Dec 3^rd, 2006, 11:10am

Try this link:
http://www.clustermasx.com/

pain free wishes, nani

Title: Re: oxygen with wrong reg? and no mask
Post by snyder on Dec 3^rd, 2006, 11:16am

Ta-da. That's the link! Thanks!

Title: Re: oxygen with wrong reg? and no mask
Post by wichita_pounder on Dec 17^th, 2006, 11:08pm

Hello, My husband got a script for the oxygen from the Doc on thursday and could tell that the 02 buys him a couple of hours at a time so he can space out the frequency of the Imitrex shots or the pills, the shots work alot quicker but he only gets about 3-4 hours; if he toughs it out with the pills he can get 6-10 most of the time. He went almost 7 years pf after 20, a typical cycle for him would always start in Nov. and last through Feb., but unfortunately the beast is back and it is pretty chronic so using meds 24-7. We are so thankful we have found this site and the Doc has been open, we tried the topamax got nowhere but the melatonin has helped him sleep and the 02 is working the regulator will go to 8 and it is working okay, we ordered a clustermasx because the one they gave him isn't a rebreather, he doctored it up some and it works but how long does it usually take to get one in, once you have ordered it? Also any advice on the 02 tanks we got a D tank but after tonight it will be depleted, it lasted about 4 nights.

Gretchen

Title: Re: oxygen with wrong reg? and no mask
Post by cuzzykins on Dec 19^th, 2006, 11:23pm

Hi Wichita... it took about 4 days for my mask to come and believe me it is well worth the wait and money.. if your regulator only goes up to 8 and your hubby isnt getting alot of relief you might want to get a diff regulator that goes up to 15.. it really knocked my pain down fast once i got all the right equipment..my tanks are F i believe .. dont let the oxygen supply run out.. i had mine delivered when i was down to 2 full tanks left.. one nite i went through a whole tank... thank goodness i havent needed O2 for a couple of weeks now.. hopefully this means im nearing the end of the cycle..

Good luck
PFDN
Deb

Title: Re: oxygen with wrong reg? and no mask
Post by wichita_pounder on Dec 20^th, 2006, 7:49pm

Hi Deb,

Thanks for the info. The mask should be getting here shortly then. At the pharmacy/ home health we got the 02 from, they said they could only do regulators that went up to 6 but the young man at the store was very helpful and went back and found one that went to 8 but told us to keep quiet about what # he was going to use it on.

Then he said to get ones up to 15 we would have to try to locate one with someone who was licensed to sell regulators that went to 15 like somenone who would supply emt, I don't know if this is a state reg in Kansas or if that is a normal nationwide deal. He is only using 02 while he is at home and it is $18 a fill right now he is using 2 tanks and I'm sure we need more they are kinda small and they fit in a little wheeled cart.

Gretchen

Title: Re: oxygen with wrong reg? and no mask
Post by cuzzykins on Dec 20^th, 2006, 11:49pm

Hi Gretchen.. i too live in KS.. I'm not sure if its the health care company i am with or what but my o2 is provided by a company called Apria Health Care.. check with the doctor and see if they can provide you with your o2 tanks etc. when i got the wrong regulator i called the company and told them i needed one that goes up to 15 and it was delivered that same day.. i can give you the number if needed.. i also read somewhere on this site that you can check on ebay.. someone bought their own regulator from there.. if i come across any more info i will let you know..

Deb

Title: Re: oxygen with wrong reg? and no mask
Post by cuzzykins on Dec 20^th, 2006, 11:55pm

ok here is the info for apria health.. i even found it on the left under oxygen info.. make sure you read the info there it is very helpful..

Apria Healthcare
155 North Donnerville Road
Mountville, PA 17554
717-285-7805
1-800-223-8948

Title: Re: oxygen with wrong reg? and no mask
Post by wichita_pounder on Dec 21^st, 2006, 9:18am

Hi Deb,

Thanks for the info, I will check into that, we are self pay so I am not sure how that works, he does get relief though at an 8 and usually 8-15 minutes. It knocks it for 1 1/2 to 2 hours, The clustermasx should arrive soon as well. PF days

Gretchen