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        Cluster Headache Help and Support >> Medications, Treatments, Therapies >> ? about O2
        
(Message started by: mac194 on Feb 20^th, 2007, 5:30pm)

Title: ? about O2
Post by mac194 on Feb 20^th, 2007, 5:30pm

Hello all,
I just started O2 last night for the first time. I have a non rebreather mask, and the O2 level is at 15l. I dont know if maybe I just had a bad night, but after the first time I used it (which worked well to kill hit), I got another hit approx. 1 hour later. This went on for approx. the next 8 or 9 hours. The O2 worked well each time, but the beast would always come back shortly thereafter. I have no trex right now, so I was unable to have a back up plan. I read alot on the board today to try and educate myself about the O2, and found that it may be common for it to return when only using oxygen.

I was just wondering if this was common for anyone else? I thank anyone in advance for any input. I am still trying to learn as much as i can about CH.

Title: Re: ? about O2
Post by Gator on Feb 20^th, 2007, 5:56pm

A lot of people report this. Unfortunately, O2 doesn't work for everyone. I'm sorry you're not having more success with it. Some things I can think of right off hand:

Are there any safety vent holes in the mask that allow outside air into the mask? You need 100% oxygen. Many "non-rebreather" masks do not provide this. Try placing tape over any holes in the mask that would let in outside air. Be sure to remove the neck strap.

How long are you staying on the O2 after the pain subsides? Many people find that staying on the O2 for about 5 minutes after the pain subsides helps keep attacks from returning.

Wishing you good luck and pain free days and nights.

Title: Re: ? about O2
Post by Guiseppi on Feb 20^th, 2007, 6:00pm

I am like you. The 02 stops it in its tracks but it returns for me 10-20 mnutes after stopping the 02. Now I take an oral cafergot, (It's kind of an old school CH med) and start the oxygen. The 02 will knock it back while I absorb the cafergot into my system. The cafergot will usually guarantee me 10-12 hours PF time.

The down side to the cafergot is if you are caffeine sensitive, (I am!), you won't be able to sleep for 6 hours after taking it. If you go this route talk to your doctor in depth about the cafergot/imitrex issues, you aren't supposed to use both but I don't explain it well, someone else will hopefully chime in with the techno side of this.

I hope it helps you as well as it has me!

Guiseppi

Title: Re: ? about O2
Post by Barry_T_Coles on Feb 20^th, 2007, 7:26pm

on 02/20/07 at 17:56:13, Gator wrote:

How long are you staying on the O2 after the pain subsides? Many people find that staying on the O2 for about 5 minutes after the pain subsides helps keep attacks from returning.

I think this is the key & found that if I stayed on the o2 for the same length of time after the hit was killed as it took to kill it another one wouldnt creep up on me quickly.
Worth a try
Cheers
Barry

Title: Re: ? about O2
Post by Lobster on Feb 20^th, 2007, 11:51pm

With the regular rebreather mask I had pretty much the same affect you are seeing.

I bought a ClusterMasx to try, as well as some kicking regulators from Happy, but have not had the opportunity to try them yet (which is really kinda nice).

Title: Re: ? about O2
Post by Linda_Howell on Feb 21^st, 2007, 12:14am

Check your PM's Mac.

Also don't give up on the 02. You might just need a "clustermasx" is all.

The site to purchase one, is apparently down right now, but I will post it as soon as I see it is in place again.

Linda

Title: Re: ? about O2
Post by TxBasslady on Feb 21^st, 2007, 9:34pm

Mac,

I place tape over the 2 holes on the mask. This just insures that I'm getting no air from outside the mask.

When I first started on the 02, the CH would come back 2, 3, sometimes 4 times. Someone here on the board suggested that once the CH is gone, turn the regulator down to 3 or 4. Sit and breathe normally for 2 or 3 minutes with the low setting. See if that helps. It helped me, but there's no guarantee this will work for you.

Make sure you get on the 02 ASAP when the CH starts. If you wait, then the 02 takes longer and may not be as effective.

Linda suggested the Clustermasx...be sure to get yourself one as soon as they're available. They are an absolute Godsend.

Wishing you lots of luck...and hang in there and give the 02 a chance.

Jean

Title: Re: ? about O2
Post by mac194 on Feb 22^nd, 2007, 2:01pm

Thank you all for your input. I taped the vent holes on the mask, and stayed on the O2 for 5 to 10 minutes, after it killed the hit. This worked MUCH better. I am going to order the clustermasx. Again, thank you.

Title: Re: ? about O2
Post by Linda_Howell on Feb 22^nd, 2007, 6:31pm

I keep checking and I keep getting the same thing when I try to get through for the clustermasx

This is the link I've been trying. Can anyone tell me if Ben changed it maybe?

http://homepages.nildram.co.uk/~tritech2/clusterx/index.html

Title: Re: ? about O2
Post by Gator on Feb 22^nd, 2007, 7:47pm

Try this link for the clustermasx:

http://www.clustermasx.com/

I don't know if the online shopping cart works, but the page does load.

Title: Re: ? about O2
Post by Linda_Howell on Feb 22^nd, 2007, 8:56pm

Thanks. My link always worked before. I don't understand it. Off to change it on my database. I appreciate it Mike and hope Mac will see this link.

Linda

Title: Re: ? about O2
Post by ben_uk on Feb 23^rd, 2007, 6:36am

There’s a glitch at paypal – some orders make it through – some don’t??
I’m assured that they are working on it.

If you have a problem – contact me via the “info button” –

www.clustermasx.com

shocked

Title: Re: ? about O2
Post by Colin Castle on Feb 25^th, 2007, 1:51pm

I just ordered one a couple of minutes ago.

Paypal seemed to work fine. I received my confirmation and receipt without a problem.

Title: Re: ? about O2
Post by Rick_K on Feb 25^th, 2007, 9:56pm

Jean, I knew you were brilliant. Opened a new mask, the old one was getting kind of rank and did not have enough brains to even check the holes. No wonder it was not working well…..duh…

Rick

Title: Re: ? about O2
Post by TxBasslady on Feb 26^th, 2007, 1:05am

on 02/25/07 at 21:56:46, Rick_K wrote:

Jean, I knew you were brilliant. Opened a new mask, the old one was getting kind of rank and did not have enough brains to even check the holes. No wonder it was not working well…..duh…

LOL....Hi Rick, how you been? Good to see you again. Been a long time since Dallas.

You should get you a Clustermasx. No holes to worry about on those. It's the greatest invention ever. I've got 2 and leave one here at the lakehouse, and the other at home.

Glad you got those holes taped, though. Makes a difference, huh? ;)

My best to you and yours, :-*

Jean

Title: Re: ? about O2
Post by Snakes on Feb 28^th, 2007, 3:45am

I've just registered on here for the first time and so this is my first post.

I'm from the UK and I've been a sufferer of CH since '89 and have tried all the usual medications settling on Sumatriptin (known as Imigran here) nasal sprays (I'm not crazy about needles so injections were out!) as the best solution for me. They usually took about 20 minutes to take effect but the attacks would follow the usual pattern of gradually cranking up to full pitch, dropping off a little towards the end and then coming back strong before subsiding for good (until the next attack).

In October my wife and I went to the Maldives for our wedding anniversary and I had one of the worst cycles ever. I've read since that if you have a change of either latitude, climate or time zone then the attacks are likely to be worse. We had all three and the cycle was terrible.

When we got back, I decided I would try oxygen next time and got set up which is easy here (I'll provide details if anyone needs them).

Very soon after returning I started getting headaches that seemed almost to be like a sinusitus type. They were similar to CH's but not so strong and shorter.

Two weeks ago they returned and are definitely conventional CH's but using oxygen for the first time is amazing in that it ALWAYS kills the attack within 15 minutes max, and usually within 3 or 4 minutes but I am getting so many more attacks.

Whereas before I would average 3 or 4 a day lasting 30-40 minutes (usually KIP scal 5 - 8) I am now getting up to 12 but all very low level, maybe 1 - 3. Most come in the night (5 last night) and maybe a couple during the day/evening.

I have not got a nonrebreather mask yet so that may help but (finally I have got to the point!), for those of you guys who are using oxygen with a nonrebreather mask, are your attacks following the same pattern as mine - i.e. low-level but high volume?

Title: Re: ? about O2
Post by jlk on Feb 28^th, 2007, 10:35pm

Oxygen did not work at all for me! In fact, I nearly passed out from nausea. I tried it a few times and each time had nausea but no CH relief. Has anyone else had this happen? It was a long time ago, maybe I just didn't do it right?

Thanks!

Jules

Title: Re: ? about O2
Post by thebbz on Mar 1^st, 2007, 2:29pm

Try it again Jules. When administered properly it works.
all the best
jb

Title: Re: ? about O2
Post by seasonalboomer on Mar 1^st, 2007, 2:40pm

on 02/28/07 at 22:35:47, jlk wrote:

you sure that was oxygen in the tank? nausea? no, never. occasionally no relief? yes, occasionally it doesn't work. the right mask at the right flow rate will do wonders.

scott

Title: Re: ? about O2
Post by jlk on Mar 1^st, 2007, 9:55pm

Thanks for the info!

Dang. It was labelled oxygen and delivered by a med supply co but who knows? Anyway, I'm encouraged that this is an uncommon side effect and I sure didn't have any special mask like the ones I've heard described here. Maybe I should try it again. Imitrex is taking an awfully long time these days. I'm thinking of trying the injections like some of the other folks here. Can you tell me how it works? Do you jab your thigh or do you have to get technical?

Jules

Title: Re: ? about O2
Post by thebbz on Mar 1^st, 2007, 10:07pm

Neck thigh butt arm. Just try to find a place that is not so sensitive. Subcutenous just under the skin.
http://i11.photobucket.com/albums/a162/thebbz/100_0949.jpg
all the best
jb
the trex comes in a statdose pen you hold it against your skin and press the button.

Title: Re: ? about O2
Post by Guiseppi on Mar 1^st, 2007, 10:48pm

I resisted the imitrex jabs for years cuz I have a deathly fear of needles. The stat pen looks like a big, fat, ball point pen. You hold it against your hiney and push a button. Hardly even a pinch and I'm the all time needle wimp. Hoping for some peace in your near future!

Guiseppi