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        Cluster Headache Help and Support >> Medications, Treatments, Therapies >> Clustermasx
        
(Message started by: pinkeye on Apr 7^th, 2007, 6:53pm)

Title: Clustermasx
Post by pinkeye on Apr 7^th, 2007, 6:53pm

I was reading the thread with tips for CH sufferers and one person was talking about oxygen and a clustermasx. There was a link for this but it would not work for me. I am assuming that it is a special mask, like a re-breather, for the oxygen. I used to use oxygen with a re-breather mask before the days of Imitrex. Lugging what looked like a keg of beer in the back of my car with me wherever I went. It was all I knew to do, and it only helped some of the time. Back then, full blast on the tanks they gave me was [I think] 8 litres. Now that people have special regulators that go to 15, I want to try it again. I have been having a bit of a tough time recently. Can someone tell me what this Clustermasx is? Thanks--Danny

Title: Re: Clustermasx
Post by E-Double on Apr 7^th, 2007, 7:43pm

http://myweb.tiscali.co.uk/tritech/img1.gif
http://myweb.tiscali.co.uk/tritech/index.html

It is a NON- rebreather mask that was "developed" by a fellow clusterhead in England.

the mask itself is not like the typical masks.
It is filled with air and fits like a dream making a perfect seal around the mouth.
He also gives you a mouth piece if you do not like the mask.
Anyway, this thing will abort attacks sometimes as quick as meds.
5-7 minutes.

KICK A$$!!!!!!!!!!!

Well worth the few dollars.
Buy one and you will never go back!

It is all I use.
No meds (preventatives or abortives..well rarely I will take a jab if in public while working)
Just my O2 and Clustermask

E

Title: Re: Clustermasx
Post by pinkeye on Apr 7^th, 2007, 8:13pm

Wow! I can't believe that I did'nt think of inventing that years ago!! Definately going to try it. Thanks a lot.
This web sight is amazing. My brothers and sisters. God bless you all.

Title: Re: Clustermasx
Post by kshodges on Apr 9^th, 2007, 11:56pm

Ah, thanks for the info. I used 02 in the past (didn't work) but I didn't have a mask like this one. I saw my neurologist the other day and left with a handful of prescriptions...02 was one of them. I almost threw it out, because I figured it didn't work then, so why would it work now, right? She wanted me to try it again, so after seeing this, I placed my order for a mask. It's worth a try, I guess. I have nothing to lose. Although, my presc does say 8 litres. Hm.

Kelley

Title: Re: Clustermasx
Post by ClusterChuck on Apr 10^th, 2007, 2:46am

on 04/09/07 at 23:56:07, kshodges wrote:

Although, my presc does say 8 litres.

If the 8 litres is the flow rate, there is a good chance it won't work for you. If your doctor, or oxygen supplier will not get you a regulator that goes up to 15 LPM (litre per minute) you can purchase a regulator on eBay, for a reasonable price.

Remember, even if oxygen does not work, for a time, keep trying. I have gone through periods where it did not work.

I swear by oxygen!

Chuck

Title: Re: Clustermasx
Post by Chillrmn1 on Apr 10^th, 2007, 6:28am

on 04/10/07 at 02:46:01, ClusterChuck wrote:

I swear by oxygen!
Chuck

Me too! Like Chuck said 8 LPM flow rate might be too low for it to work for you, so don't give up on the O2 until you get a regulator that will give you up to 15 LPM.

Title: Re: Clustermasx
Post by kshodges on Apr 10^th, 2007, 9:27am

Awesome. I questioned the 8 lpm when it was given to me (knowing it didn't work then), but I didn't ask for more. I felt like I was sort of stepping on her toes. So it's the regulator that allows the higher flow rates? It's been so long, I can hardly remember.

Well, I'll just go out there and see what's available. My big concern is the amount of 02 I'll be using. If a tank allows 44 minutes of air at 15lpm (I saw someone post that somewhere) and I have a headache every hour...hm. Dang, I'll need a circus size tank! But hey, I'll give it a try and at least see where it takes me.

Thanks guys. :)
Kelley

Title: Re: Clustermasx
Post by pattik on Apr 10^th, 2007, 9:38am

on 04/10/07 at 09:27:25, kshodges wrote:

Awesome. I questioned the 8 lpm when it was given to me (knowing it didn't work then), but I didn't ask for more. I felt like I was sort of stepping on her toes.

Here is a link to an article which you could print out and give to your doctor. It helps justify an RX for a higher flow rate.

http://www.chhelp.org/mhni.html

Good luck with the O2.

Pat

Title: Re: Clustermasx
Post by Brewcrew on Apr 10^th, 2007, 10:01am

on 04/10/07 at 09:27:25, kshodges wrote:

Here's a calculator for you to use:

http://www.monroecc.edu/depts/pstc/backup/paraoxca.htm

Title: Re: Clustermasx
Post by Sandy_C on Apr 10^th, 2007, 1:32pm

Hey Bill, thanks for the link on the tank calculator! That's a handy dandy piece of information to have.

Sandy

Title: Re: Clustermasx
Post by pieface_49 on Apr 10^th, 2007, 3:48pm

I need some help here also. Got my first prescription for medical O² yesterday from the Neuro. I told her I needed 15lpm and left with a script for 10lpm. What is the difference between medical O² and welders O²? Can I replace the 10lpm regulator with a 15lpm regulator? Should I just purchase the bottle/cart and regulator off of Ebay? Thanks for the calculator link Brewcrew. It will be a great help.

Donnie

Title: Re: Clustermasx
Post by ClusterChuck on Apr 10^th, 2007, 6:26pm

The only difference in welding and medical O₂ is the tank, and tank fittings, that it is in. If you have a 'script for the medical stuff, stick with it, and get a different regulator. Most of the time, they are very reasonable on eBay ...

Chuck

Title: Re: Clustermasx
Post by pieface_49 on Apr 11^th, 2007, 9:02pm

Thanks Chuck,
I have not researched, but is there a reason the medical profession does not want to prescribe 15lpm? I told my Neuro I needed 15lpm and walked out with 10lpm.

Interesting topic on oxygen:
http://thenaturalhealthplace.com/Articles/Oxygen.html

A book devoted to oxygen:
http://www.amazon.com/Flood-Your-Body-Oxygen-McCabe/dp/0962052728/ref=pd_sbs_hpc_2/102-4790413-0592116

Anyone have any experience with an oxygen generator:
I am finding most at a max of 5lpm.
These oxygen generators appear to be for use in an oxygen bar or for sleep apnea.
http://www.ogsi.com/og15_up_to_15_scfh_.php

Effects of pure oxygen:
http://www.livescience.com/humanbiology/060418_bad_oxygen.html
http://stinet.dtic.mil/oai/oai?&verb=getRecord&metadataPrefix=html&identifier=ADA026855
http://www.lenntech.com/Periodic-chart-elements/O-en.htm
http://www.madsci.org/posts/archives/2005-03/1110848716.Me.r.html

Something culled from divers:
"When manufacturing oxygen, the various components, primarily O2 and N2, are separated when they reach their particular boiling temperature, and each gas is collected and stored under pressure in cylinders. Contrary to popular misconception, there is NO difference between the preparation of industrial grade and medical grade O2.

However, medical O2 is completely evacuated from cylinders upon refilling, whereas industrial cylinders are simply topped up, or have been allowed to become completely empty before re-filling, allowing for contamination.

If carbon monoxide from engine exhaust has seeped in to the industrial cylinder at the work site, that gas at best will inhibit cilia movement by thickening mucus in the eustachian tubes and nasal passes, preventing effective equalization. (See “Why Not Head First Descents” in DBI’s fall ‘97 Medical Update) At the worst, it exerts major toxic effects on cells and on the brain.

However, even medical grade oxygen can be contaminated, which you can test for on-site. One of our own divers, an EMT, was sitting in on the oxygen provision course and advised that he always trains the local fire department to exhaust a burst of gas onto a white surface, or their own skin, before administering it. Why?

From time to time, EMT’s see a fine layer of brown coloring over a patient’s skin inside the area covered by the breathing mask. Remember that oxygen is colorless, and any discoloration is contamination.

If the O2 cylinder hasn’t been completely evacuated properly between uses, or was filled right side up, instead of upside down, or in less than ideal conditions, moisture can form inside the cylinder, causing rust, which forms very quickly in a pure oxygen environment. He advised that before administering oxygen, that the O2 cylinder be turned upside down to allow any moisture that may be present to drop to the valve, and that a sample be blown onto a white surface. If discoloration is present, discard the cylinder and do not use it again until it’s been vizzed and cleared by a certified technician."

Title: Re: Clustermasx
Post by Superpain on Apr 11^th, 2007, 9:43pm

8 lpm works fine if you do it right (with the clustermasx)!
Put on a large resevoir bag to have reserve O2 available and with each inhalation just hold your breath for a few seconds to give the bag time to refill. I find holding my breath much more effective and less painful anyway. Give it a try!

Title: Re: Clustermasx
Post by Superpain on Apr 11^th, 2007, 9:46pm

BTW, I use welders and with my breathing technique described above, once the bag is filled I have to turn the valve almost off to keep from spewing O2 from a full bag.

Title: Re: Clustermasx
Post by pieface_49 on Apr 12^th, 2007, 8:50pm

I read today where the suggested lpm for CH sufferers is 7lpm http://www.aafp.org/afp/20050215/717.html http://health.yahoo.com/ency/healthwise/hw185566 http://www.headaches.org/consumer/topicsheets/oxygen.html. Where does the 10-12lmp come from with a 15lpm regulator? Can only assume from experience. We appear to be pushing the envelope of what is medically accepted and necessary. Perhaps it would be in the best interest of many to evaluate the "Oxygen Info" to the left.

Donnie

Title: Re: Clustermasx
Post by seasonalboomer on Apr 12^th, 2007, 8:55pm

on 04/12/07 at 20:50:05, pieface_49 wrote:

It comes from experience, but I also believe that Dr. Goadsby and others now use the 10-15 lpm in their recommendations. We aren't pushing the envelope, it's just oxygen. Too many people come here after having been given a crappy mask, or worse, canulas from some idiot doctor, and a regulator that maxes out at 8 lpm and they say oxygen just didn't work for them. Then, the open minded ones, go back and get a decent delivery device (clustermasx) and a reg that hits them with 10-15 lpm and they thank the good lord they gave it a second chance - their life was changed as a result.

That's not just one anectdotal experience -- that's dozens and dozens.
7-8 lpm is shit.

Scott

Title: Re: Clustermasx
Post by Gator on Apr 12^th, 2007, 11:29pm

on 04/12/07 at 20:50:05, pieface_49 wrote:

We are not pushing any envelopes where the use of oxygen is concerned. We are working within the bounds of published medical research.

15 lpm comes from experiences at places like Michigan Head-Pain & Neurological Institute where leading cluster headache doctor, Todd Rozen, wrote that flow rates of up to 15 lpm often worked in sufferers for whom the standard 7 - 10 lpm does not work.

http://www.chhelp.org/mhni.html

Because of the pain we live with and the desperation to stop it, clusterheads do push the envelope sometimes. If we don't who will? How else would we know about psilocybin, LSA, kudzu, taurine and more?

Go back and read through the kudzu threads. Something almost totally unknown was researched, tested and the results good or bad were documented. Possible interactions and side effects were discovered and warnings were posted. All by clusterheads. Because of the people who played guinea pig, clusterheads have another weapon in their arsenal against clusters.

Title: Re: Clustermasx
Post by Chillrmn1 on Apr 13^th, 2007, 5:16am

on 04/12/07 at 23:29:40, Gator wrote:

Because of the pain we live with and the desperation to stop it, clusterheads do push the envelope sometimes. If we don't who will? How else would we know about psilocybin, LSA, kudzu, taurine and more?

Because of the people who played guinea pig, clusterheads have another weapon in their arsenal against clusters.

Well said Gator.

Title: Re: Clustermasx
Post by pieface_49 on Apr 13^th, 2007, 7:48am

Thanks Gator, that was very helpful.

Thanks to the many who have come before me. I am learning and get confused sometimes by the varying/abundant information that is to be read. I wish I would have bookmarked the thread concerning kudzu dating 2005. I am grateful for the link that was posted recently concerning kudzu. Ahhhh, found it. Hopefully, it will help someone else. http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=meds;action=display;num=1110584362;start=0#0

Donnie

Title: Re: Clustermasx
Post by Sandy_C on Apr 13^th, 2007, 3:15pm

Donnie

I use welder's oxygen, the clustermasx, and a regulator going to 15 lpm.

It works wonders. Wouldn't give it up anything.

Sandy