O2? Did I hear talk of new mask...?

[ShellieNaz]

Hi Guys-

I've decided to give the O2 (another) whirl..since I'm sort of prefacing the whole "new treatment", I've decided to cover all my bases!

When I initially tried O2 years ago, I know it wasn't at the correct flow rate etc. So...if Im going to transition away from the Topomax/Imitrex, Im gonna have the O2 as back-up! Good idea, wouldn't you all agree- At least give it a try..see what happens? Can't hurt..Anyway, I looked here on the board at the mask & I have no reference for what's new,old etc..EDUCATE ME!! 

Thanks, Love you all..

Be well-

Shell

[Dallas Denny]

Hey Shellie,

Just go to the CH.com store and order the Opti2Mask from DJ for around $30.

Denny

[Lee_Ann]

Hi Shellie,

I don't know if Dan told you this or not.  I don't think he mentioned it in his speech, but he did not have the proper mask until a couple of weeks before he started busting.  As soon as he got the mask, there was a definite improvement in abort time.  Before he got the proper mask, the oxygen sometimes worked and sometimes not.

After he started busting, it worked even better.  If he didn't have the proper mask, I don't think his bust would have been as successful.  The proper mask and his complete detox from all medication made the difference in his success in my opinion.

Definitely worth a try!!!  Remember, get on the oxygen as soon as you feel an attack coming on, and stay on it until it's completely gone.

Good luck!!!

Lee Ann

[ShellieNaz]

Denny-Hi..yep, the Opti2Mask!! That's what Im talking about!! I couldn't remember what it was called, exactly..Thanks buddy! 

Lee Ann,

I've been told several times about being detoxed before I start busting..I will most certainly do that!    I called yesterday trying to get my Dr's appt. moved up from 9/14 but no luck as Im very anxious to get this show on the road..lol! But, wth- I've been doing this for awhile now..what's a few more weeks gonna hurt, right? : 

Thanks guys for the info-Hope all is well..Keep ya posted!!

:-*

[Hipshot]

Shell. Dan here:) the right mask ,makes all the difference. One trick is when exhaling: make sure to empty your lungs completely...to the last bit of air. Get the carbon dioxide out. A little diddy that Denny shared with me. It will work for you this time. I can feel it!

[ShellieNaz]

Hi Dan!

Thanks-yep will keep that in mind..Empty my lungs out completely!!!! Can't wait to re-try some of this stuff that I've tried in the past!! Hopefully, with newer & proper method(s) & proper flow rates etc. it's gonna be a "go" for me..about time, I'd say, huh? Last night was a killer & again this morning beat me to a pulp..

I've been passing all this info onto another friend of mine that's also basically been Med. resistant/Chronic for 18 yrs. & she just cannot wait to try busting!! O2 has worked for her but she's always used the older mask with not alot of good to say about it other than "It's better than nothing!" So, I also sent her the link to get one of these new ones!

Thanks for all the info & support guys..   

[Hipshot]

I can't stress it enough. I was amazed when LA bought me the right mask. Wishing you and your friend the best.

Dan

[alleyoop]

I was amazed when LA bought me the right mask.

You think the mask works good?  Try a mouthpiece.  There is absolutely no way to get anything other than pure 02 with a mouthpiece, and it is so much easier to manage.  You don't have to have a free hand to hold it all the time.  You can hold it with your teeth.  Inhale through the mouth, exhale through the nose.  It don't get any easier than that.

[Lee_Ann]

I either threw away the mouthpiece or misplaced it, so Dan hasn't tried it, but I'm going to order another mask, just to have a backup on hand. 

He has had 2 attacks since July 1st, so not having to use much oxygen lately.  Clusterbusters Rock!!!!!

Lee Ann

[ShellieNaz]

A MOUTHPIECE!??? You kidding me??!! OH MY GOD! Denny, Dan, either of you guys remember me telling you, when I have my attacks it feels literally like fire is shooting out of my right nostril?? That's why I've had such difficulty using O2 in the past! I had no idea there was even such thing as a mouth-piece...Now, THAT'S what I'M talking about..!! WooHooo!

Now, "Hipshot", (Did we meet in Portland??) do I get that at the same place as the mask..CH.com, D.J., ?? Please let me know..I've often thought of a mouth-piece but I've never seen one around-must of not of looked too hard though, huh?!! I am thrilled about this..you guys have no..lol..I started to say, "You guys have No idea..lol, How many times did I start to say that in Portland!?? I forget,you guys are THE ONLY ones that have ANY idea of what Im' talking about..I'm so grateful for all of you..I truly am!! Old habits die hard, I guess!!"

(I think your right Dan..I think this might just be THE time for me..things are just amazingly "clicking"..ya know, when things just seem to fall into place..?? Don't wanna talk too loudly though, don't wanna jinx myself..

You guys are the Best!! :-*

S.

[Lee_Ann]

Hi Shellie,

Dan is Hipshot.  LOL

The mouthpiece comes with the mask.  Or should, I believe.

Have you received your mask yet?

Lee Ann

[ShellieNaz]

Omg..my mistake!! So sorry..Apologies!!     ;D

Lee Ann, is that Dan's regular user name then?? Hipshot? I looked back and re-read..sorry about the mix up!!

Im sorry..I meant Alleyoop..? Were you also in Portland?

[Hipshot]

Shell, The mix up is understandable. I keep getting you and Cindy confused in my peabrain. The mouthpiece sounds like a good idea; I will try it too, thanks Alleyoop.

[alleyoop]

I meant Alleyoop..? Were you also in Portland?

Nope. 

I was unable to attend this year due to financial considerations.  The same held true for last year. 

Last year my youngest daughter (25) got married in a destination wedding.  This year, it was my oldest daughter's (28) turn.  Thank God, it wasn't anywhere near the affair of last year, but still quite taxing. 

All of it was of course, quite worth it (as long as it all works out and they stay married).    Hopefully, that won't be a problem.  They seem to have both made very good choices. 

I look forward to meeting you Shellie, along with many more here, in Chicago next year!  :)

bobb

[raquelinkansas]

Hi Shellie.  Sending good vibes your way on the oxy!

[ShellieNaz]

Thanks Raquel! Good Vibes needed & accepted!!

Dan-me & Cindy mixed up, really? red head, tall, glasses/blonde-brown-MESS, short, no glasses?lol!!Your funny!

bobb-alleyoop, so sorry you missed Portland! It was..I honestly still can't find word's big enough to describe it yet! Dan & Lee Ann had me sobbing, laughing..sobbing..etc..I fell madly in love with those 2 on the spot & everyone else that was there actually!! I just came away feeling & I've said "The friendships/family that was forged that weekend, will be forever..or at least in my heart!!" There is not one thing that I would not do for any of those people..or any other CH sufferer, I suppose! What a mush-ball I am, sorry! :

Anyway, back to the O2 here..

[Sandi Suddaby]

I'm going to try the mouthpiece too - there is so much trigeminal pain with these CH sessions that the mask is actually painful though nicely padded.  Just can't stand anything touching my right side of face when hit.  Those usual 10-12 minutes at 12-15 lpm seem like an eternity.

Sandi

[Racer1_NC]

Those usual 10-12 minutes at 12-15 lpm seem like an eternity.

Increasing the flow rate may help lower your abort times....

[Chad]

I was amazed when LA bought me the right mask.

You think the mask works good?  Try a mouthpiece.  There is absolutely no way to get anything other than pure 02 with a mouthpiece, and it is so much easier to manage.  You don't have to have a free hand to hold it all the time.  You can hold it with your teeth.  Inhale through the mouth, exhale through the nose.  It don't get any easier than that.

I couldn't agree more.  The mouthpiece is the ONLY way to go for me.

...and for all of you wondering, when you order from DJ at CH.com a mouthpiece and mask comes with the kit so no need to get that mouthpiece separately.  If you get dry mouth, you can always keep a glass of water by your side and take a sip in between breathes or use what they call a "bubbler" which adds moisture to your O2.

[clustermom13]

Shellie,

Just so you know, the mouthpiece looks like a tube.  It came with our mask.

[dirk10]

Hi - i'm new here but thought i'd throw in my two cents. Been a CH sufferer since my early 20's. i'm 40 now.  Discovered O2 only about 4 or 5 years ago.  it's been a blessing. Sometimes it's not 100% effective for me, but it has by far and away been the most effective for me.  The cheap masks the company provides with my cylinders never really worked for me.  A few years ago I realized the easiest thing to do was just pull the mask off the tube (or cut it if it's connected) and stick the tube right in your mouth like a straw.  I like this method for several reasons.  1) no chance of anything but pure O2.  2) you can exhale through your mouth or nose.  IF you exhale through your mouth you can breath out very quickly (in a second or two) and be breathing the O2 right back in.  It will dry your mouth out much more quickly, throat, etc. but I just keep a little water handy and every minute or two just take a quick sip between breaths. I should set up a bubbler, but just never took the time.  3) I have to leave work a lot to go jump in my car during a cycle and breathe the O2 and i've found the tube to be so much less conspicuous. When i used the mask co-workers would come out and want to know what in the @#%@ hell was wrong that i was breathing from an O2 mask.  Don't know about you all, but one of the truly tiring things about suffering from this hell is that so few people (except fellow sufferers or their families) have ever heard of this #$%@# condition.  I'm on my eighth week of getting pounded daily, waking up at night, and getting really flipping depressed.

[FunGuy]

There is a new mask:

http://www.clusterheadaches.com/khxc/

from personal use, it is amazing.   IMO if you are using oxygen you must try this.

Look on the ch.com page for detailed information on O2. 

The non-rebreather masks from any supplier have a bag, think of it as a reservoir.  Say you've go your flow rate at 15lpm, that is what is coming down the tube so that is all the O2 you can get.  The bag gives you more as while you are exhaling the bag is filling.

The standard O2 masks have ports or openings on the sides, usually one is closed off with a plastic flapper valve but the other is open.  Duct tape fixed that, so you are inhaling only 100% O2.

I think we all have stories about well-,meaning people becoming alarmed when they see us puffing away on oxygen.  After all, it's only used when someone is having a heart attack.

I try and smile while I tell them to leave me alone.   ;-)

Dg

[1961mom]

Hi there Dirk10

And Welcome!

All the cost saving tips & tricks, not to mention time saving too are so great to be posted here.  We never know when someone may be reading (in between attacks) with a old fashioned regular mask, getting no relief and WAHLAH.....an angel has posted a valuable tip! 

I sure hope you're getting relief too!

[raquelinkansas]

Ditto Dirk. 

I sure hope you're getting relief too! 

Hang in there!

[Brent212]

I finally was able to get my doc to write me a script for O2, but he clearly has no idea what he's doing. When I was in his office, I tried to explain to him that I had the exact text he should write down (got it from clusterheadaches.com message board - "Oxygen therapy at 12 to 15 liters/minute with a 10/11 - non-rebreather oxygen mask AS NEEDED for cluster headache attacks."). He completely dismissed this as he wasn't willing to listen to something I just pulled from the internet (he's the "expert"... even though he had absolutely no knowledge on clusters whatsoever). So he said he'd do some research and write me a prescription later that I could come back and pick up.

I got the script today and here's what it says: "Oxygen via nasal cannula @ 3L/min for cluster headache". This is worthless, correct?

So what would you recommend I do to get O2? I'm giving up on this doctor, but I'm willing to try finding one that has some experience with CHs. Or is not even getting a script and just getting the O2 myself a better route? If so, do I get it from a welding shop? How do I find one?

Any info is appreciated.