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jjslugdog
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Proper use of O2
« on: May 8th, 2008, 7:09am »
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I was dosing with O2 last night, and all of a sudden it hit me how we used it with COPD patients in the hospital.  I tried it, and it seemed to work.  Breath in, then exhale through pursed lips.  It gives the O2 longer to get into the blood stream, and exchanges more CO2 out of the blood stream.  I know while in the midst of a 8-10, hyperventilating is normal, but I think the pursed lip exhale will actually allow more of the O2 in.  A respiratory therapist could claify this, if we have one on the board.
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Re: Proper use of O2
« Reply #1 on: May 8th, 2008, 9:56am »
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I will try it.  I have the worst problem with O2.  I swear, what is the point if I use it and abort the HA, then have to go back to it in an hour.  I hate this crap.  Can you tell I'm tired of this cycle now?
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Re: Proper use of O2
« Reply #2 on: May 8th, 2008, 12:48pm »
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on May 8th, 2008, 9:56am, Paige_H. wrote:
I will try it. I have the worst problem with O2. I swear, what is the point if I use it and abort the HA, then have to go back to it in an hour.

 
 
02, when used and administered properly has been a God send for many here.
 
Most important is to get on the 02 as soon as the CH presents itself.   Using a regulator that goes to at least 15 lpm and a clustermasx aborts 100% of my CH 100% of the time.  02 is the only abortive I use.
 
When you find yourself having to return to the 02 within minutes or an hour after a hit, may suggest that you need to remain on the 02 for a few minutes longer.
 
What solved the "return to 02" problem for me was...when the 02 appears to have aborted the current hit, I turn the regulator down to about 3 to 4 lpm...and breathe in that low rate of 02 at a normal breathing rate, and continue that for a couple of minutes.   That stopped having to return a 2nd time for relief of a hit.
 
Hyperventilation while using 02 seems to defeat the purpose and usually prevents the 02 from doing it's job.
 
While it's easier to say than to do....normal breathing while administering 02 works much better and faster.
 
I am not a therapist, nor a doc....just a normal clusterhead like you.  This advice was given to me by other clusterheads who have many more years of CH and 02 use than I.
 
It has worked very well for me.
 
Wishing you better luck with the 02...
 
Jean
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Re: Proper use of O2
« Reply #3 on: May 8th, 2008, 1:08pm »
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How long on you on the O2?  I'm going nuts.  Unfortunately, I'm one of those people that has to have a certain amount of sleep or I go nutty.  I can't do Imitrex because it makes my heart jump out of my body, Zomig does the same thing and makes me vomit.  I'm not having any fun.
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Re: Proper use of O2
« Reply #4 on: May 8th, 2008, 1:18pm »
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on May 8th, 2008, 1:08pm, Paige_H. wrote:
How long on you on the O2?  I'm going nuts.  Unfortunately, I'm one of those people that has to have a certain amount of sleep or I go nutty.  I can't do Imitrex because it makes my heart jump out of my body, Zomig does the same thing and makes me vomit.  I'm not having any fun.

Are you on any kind of preventative?
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Re: Proper use of O2
« Reply #5 on: May 8th, 2008, 1:23pm »
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Hi Paige,
 
I'm sorry to hear you're getting slammed.  
 
O2 works for me but I get rebounds too.  Before I ramped up on Verapamil (which is working very well BTW) I used to back up my O2 with an energy drink.  Combining the two kept the beast at bay for a while.  
 
Of course an energy drink in the middle of the night isn't going to help you get back to sleep either  Roll Eyes  However I found that over time I got used to them and the "rush" I used to get went away.
 
Having said that, if you are on Verapamil or any other calcium channel blocker you need to be very careful with the 1000mg of Taurine in the average energy drink.  You see Taurine is also a calcium channel blocker.  Block too many calcium channels and you have heart rythm problems.  Much better to suffer CH than heart rythm problems.
 
So now that I'm on a higher level of Verapamil I stick with the O2 as many times as it takes staying on longer each time at a lower flow rate to keep him down.  Fortunately this doesn't happen often anymore.
 
I hope you catch a break soon...
 
-Dennis-
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Re: Proper use of O2
« Reply #6 on: May 8th, 2008, 1:29pm »
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I am on prednisone at the moment.  I hate it too.  Right now, I'm kinda hating everything.  I can't do verapamil anymore.  It had stopped working in the last cycle anyway and actually made things a bit worse.  I have inderal, but  apparently that doesn't do alot of good.  This cycle has really gotten me down, because I've been very lucky in having things to work in the past 3 years.  Now, here I am in a new job and attempting to not rip my head off.  My cycle usually last about 6, maybe 8, weeks - so I should be nearing the end.  But I can't go with only 1 1/2 hrs sleep a night and then work.  I just wish I could figure out what to do about the rebounds from the O2.  It aborts the headache about 90% of the time, but I'm back on the sucker way too soon.  Red Bull is awesome with some of the HA's, but not those big ones.
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Re: Proper use of O2
« Reply #7 on: May 8th, 2008, 1:46pm »
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Talk to your doc about using one of the longer acting triptans. When I'm in the heat of battle, usually 2.5mg of Amerge at bedtime will assure me about 5 or 6 hours of sleep. Usually.
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Re: Proper use of O2
« Reply #8 on: May 8th, 2008, 1:51pm »
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I've been dealing with these things since I was 10 yrs old.  I will be 40 next month.  I'm tired of it and I'm pissed off about it this time.  More pissed off than usual.  I've heard Amerge was pretty good to use as a preventative before bed.  I just hope he can give samples.  My insurance doesn't kick in until the end of next month.  Thanks for your help.  Maybe I will be in a better mood about it tomorrow. Angry
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Re: Proper use of O2
« Reply #9 on: May 8th, 2008, 3:51pm »
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Dear Paige,
 
  Sorry to hear about your despair, I hope this info can help you.  I am a newbie here and am still learning alot. I need to get a prescription for imitrex which is made by GlaxcoSmithKlein ( GSK ).  The pharmacy told me that for 6 doses it would cost $250.00 which I could not afford...I have no insurance.  The Pharmacy told me to call GSK which I did and they told me about a program of theirs called Bridges to Access.  In tis program I will have to pay a $10.00 co-pay for the first 60 days of my prescription which i will get directly from the pharmacy the after GSK will send the meds directly to me for the rest of the year.  Every year after that they will review my case to see if I am still eligible.  I go back to the pharmacy tomorrow to take care of the paperwork and then hopefully i can get the meds.  I'll let you know my results.  So try and talk with your pharmacy to see if the manufacturer of your meds have similiar programs.  Can't hurt asking and I feel these are things they don't tell you unless you ask.  Hope this helps and I wish you well.    John
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Re: Proper use of O2
« Reply #10 on: May 8th, 2008, 3:52pm »
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Piage- your mood is a factor of many things. Am I telling you anythign new??? But mostly from the Prednisone [and lack of sleep]. You are exhausted, irritable becasue of that, and the prednisone just fuels the fire. Let's not forget the beast.  
I have not found O2 to be a God send like others have; it does not abort well, for me and give me the rebounds. Maybe I am doing something wrong. The thought of taking in sooo much caffeine while in cycle scares me.  
Do you have an Rx for Valium? I got one when I was on prednisone and have one for my Topamax Rx.  
Getting hit @ work sux, I know you know that. but @ home have you tried the frozen peas or corn on that side of your face as soon as your feel one coming?
TomM
 
BTW---I am SOOOOO glad to have you back! Not glad that you are in cycle, though. Missed chatting with you.   Kiss
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Re: Proper use of O2
« Reply #11 on: May 8th, 2008, 3:57pm »
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Tom - does the valium help any?  I had Elavil for one cycle and it seemed to help some.  And what about the Topomax?  I'm considering asking for ergotamine pills, my doc was scared to write them for me last time.  The Fioricet doesn't really help a cluster, but I promise it is a miracle on a tension headache.  Even seems to help a silly migraine.  
 
I just think we don't know how to use O2.  I don't know how we can't use it properly, we are just very special that way.
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Re: Proper use of O2
« Reply #12 on: May 8th, 2008, 4:05pm »
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I've been on Topamax since last summer. Tapered off this spring and bam! Back in cycle. I've tapered back up. I keept my Kip 10's to Kip 3 last summer. This year, my worst was yesterday--a kip 5. Warning though. I got every side effect they mention. Good news is no jitters. Bad news is cognitive loss. Other good news is weight loss [now you know my secret].  
Read this: http://www.topamax.com/topamax/how-topamax-may-help--what-to-expect.html
I take a Valium when I need it which is not very often. I needed A LOT when I was on prednisone. That SH*T made me hyper!
TomM
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Re: Proper use of O2
« Reply #13 on: May 8th, 2008, 4:11pm »
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Yeah, the prednisone doesn't really make me hyper.  But it sure makes me a lovely person to deal with. Angry  I promise someone threatened last Friday night to put me in a padded room, just from the mood swings alone.  I tend to bite fairly quickly right now and I promise I will cry at the drop of a hat.   It will be nice to be off the 'roids.  That is if I am PF afterwards.  Oh and I would like to stop eating every 2 hours.  It isn't even snacking - it is wanting a full meal!!!! Undecided
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Re: Proper use of O2
« Reply #14 on: May 8th, 2008, 4:25pm »
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on May 8th, 2008, 4:11pm, Paige_H. wrote:
I tend to bite fairly quickly right now

Oh, YEAH! That is sooo true. I actully told one of my docs I need the Valium Rx for my wife.
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Re: Proper use of O2
« Reply #15 on: May 8th, 2008, 8:21pm »
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I used Elavil at bedtime, and it stopped 'em, at night.  I was on prednisone at the time.  I can't believe O2 and caffine are working for me this time, but I'll take whatever works, huh?  Never tried valium though..
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Re: Proper use of O2
« Reply #16 on: May 9th, 2008, 8:27am »
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on May 8th, 2008, 8:21pm, jjslugdog wrote:
I used Elavil at bedtime, and it stopped 'em, at night. I was on prednisone at the time. I can't believe O2 and caffine are working for me this time, but I'll take whatever works, huh? Never tried valium though..

 
 
Whatever works is right!  Caffeine will work for me in the first couple of weeks in cycle, but then it just stops.  The worst problem I had with Elavil was being quite the zombie, which my boyfriend my appreciate right now.  Because I'm one hateful woman this go around.  Of course prednisone can make you pretty moody.  I'm on the downside of the prednisone now, so I'm hoping the suckers will be gone and my mood will improve.  Otherwise, I might need to be checked into a mental establishment and locked in a padded room for awhile.
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Re: Proper use of O2
« Reply #17 on: May 12th, 2008, 7:06pm »
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Heres a link to a very useful piece Chuck reposted back in March 2006, it provides a lot of good info for the newbies.
 
Cheers
Barry
 
http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=meds;action= display;num=1142748998
 
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Re: Proper use of O2
« Reply #18 on: May 14th, 2008, 1:01am »
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Found this safety info on another website:
 
 
Stay at least six feet away from any open flame or heat source (candles, gas stove, etc.) when you are using your oxygen system. If you must cook while using oxygen, make sure your tubing will not touch the gas flame or electric burner (tuck the tubing in your shirt or position it behind you).  
 Do not store your oxygen system near any heat sources or open flames.  
Do not smoke nor allow others to smoke in the same room as your oxygen system. Cigarette smoking is very dangerous: sparks from a lighted cigarette could cause facial burns.  
Post "No Smoking" signs in the room where your oxygen is kept.  
Do not change the oxygen flow rate on your own -- this can lead to serious side-effects. If you feel you are not getting enough oxygen, contact your physician and notify your home care supplier.  
Never use more than 50 feet of oxygen tubing. This can dilute the concentration of oxygen that you are receiving.  
Do not expose your oxygen equipment to electrical appliances (such as electric razors, hair dryers, electric blankets, etc.)  
Check that all electrical equipment in the area near the oxygen is properly grounded.  
Be sure to have a functioning smoke detector and fire extinguisher in your home at all times.  
Keep the oxygen system away from aerosol cans or sprays, including air fresheners or hair spray. These products are very flammable.  
Keep the oxygen system clean and dust-free. The person who delivers your oxygen will show you how to do this.  
Do not use cleaning products or other products containing grease or oils, petroleum jelly, alcohol or flammable liquids on or near your oxygen system. These substances cause oxygen to be flammable.  
Keep the oxygen system in a place where it won't get knocked over.  
Always store your oxygen equipment in a well-ventilated area.  
An oxygen cylinder must be secured at all times; put it in a cart or lay it down flat.  
Do not carry liquid oxygen in a backpack or other enclosed space. Carrying cases, shoulder or hand bags, shoulder straps and backpack oxygen units are available which provide proper ventilation for the unit to ensure safety.  
Never use extension cords with any medical equipment.  
Secure loose cords and extra tubing so you don't trip on them when using your oxygen system.  
Secure floor mats and throw rugs so that you will not trip or fall when using your oxygen system.  
Be sure doorways, hallways and rooms can accommodate you if you have a portable oxygen system.  
Notify your electric company if you are using an oxygen concentrator system so they can make your house a priority during a power outage.  
Oxygen is a drug and must be used as your doctor ordered it. Too much or too little can be harmful.  
Take precautions to avoid skin contact when filling your portable liquid oxygen tank, as frost buildup could cause injury.  
Always have backup tanks available, and know how to use them.  
Myths and truths about oxygen  
 
Myth: Oxygen is addicting.
Truth: Oxygen is NOT addicting.  
 
Myth: If I have a stuffy nose, I shouldn't bother using my nasal cannula.
Truth: Oxygen can still be delivered even if you have a stuffy nose.  
 
Myth: Once you start using oxygen, you'll need it for the rest of your life.
Truth: Many people have discontinued oxygen use, after other appropriate treatments have taken effect. This can take time, though.
 
Myth: People who need oxygen must be confined to their homes and can not do anything, including travel.
Truth: People who use oxygen can lead a normal life. There are several types of portable oxygen systems available that allow people to be more active and mobile. Oxygen can improve exercise capacity. People who use oxygen can travel with advanced planning.  
 
Myth: If a little oxygen is good, more oxygen is better.
Truth: Oxygen is a drug. Use it as prescribed or instructed. Like any drug, too much or too little can be harmful.  
 
Myth: Shortness of breath means a lack of oxygen, so if you become short of breath you should use oxygen.
Truth: Shortness of breath is not always associated with a lack of oxygen. If low oxygen is not the cause, taking oxygen will not help. (Your doctor can test to see if you need oxygen by taking an arterial blood sample).  
 
ebsite:
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Re: Proper use of O2
« Reply #19 on: May 15th, 2008, 12:26am »
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New to this, just got an oxygen concentrator, machine makes its own oxygen without bottles and use a rebreather mask. This setup maxes out at 5L/min which everything I've read says is not enough for CH but my wife who's an LPN says its pure, concentrated O2 and with a rebreather mask should be equivlant to 10l/min straight O2? Anyone used a concentrator before? On prednisone right now, the beast is quiet for the moment but I feel him in there, guess I'll find out in a day or 2 and let you know if it works.
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Re: Proper use of O2
« Reply #20 on: May 15th, 2008, 1:22am »
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 Hi Transamdoug
 
  Check your PMs (upper left corner).  You need to start a new topic on the "Getting to Know You" board . . . and then we can address your experience with CH more specifically.  The very top thread on that board has (currently) 19 pages of posts and aren't  always read by everyone.
 
  Re the 02.   No . . . the generator won't do it.  We need 100% 02 through a non-rebreather mask (the one with the bag).  At 15lpm, the bag will fill in about 4.5 - 5 seconds.  When the bag is full you can take either a 5 second deep inhale and follow with 4-5 second exhale (allowing time for bag to refill), or, if hit with hard/fast attack in middle of night,  1-2 second inhale (till bag is flat) and then 4-5 second exhale so can refill same.    If you feel a hit coming, use early-on and you can get away with 10-12 lpm if at the mildest stage.
 
  Start that "new topic" about yourself . . . and you'll be in for an onslaught of info, all which comes from folks who have REAL experience with this beast of ours and truly understand the pain.
 
   Be Safe,   PFDANs
 
 Richard
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Re: Proper use of O2
« Reply #21 on: May 15th, 2008, 2:12am »
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Re the "Safety Info"
 
  Some of this is BS . . . and much of it doesn't apply to the equipment we use or the way we use it.  
 
  First, regarding the fire hazards.  Common sense . . . you don't light up while filling your gas tank do you?  The way we use it, the danger is that your clothes (in my case beard also) become saturated with 02, and anything flammable + 100% 02 + spark/flame = fire.  Don't use it and smoke at the same time . . . and wait a minute or two to light-up after you've turned off the 02.
 
  Yes, if you're using a large welder's cylinder of 02, the tanks must be secured.  They are large steel tanks with (soft) brass valves, that if dropped and valve is broken could become rockets.   That's also why when they're delivered they have a steel cap screwed directly to the tank to protect the valve.  Even the (brass) valve on your 20 lb tank for your grill has a steel shield for same reason.
 
  The med oxygen tanks we use are aluminum tanks with stainless steel valves, and considerably safer to handle for anyone.  No, I wouldn't want to try slamming it into a concrete floor, valve first, just to see if I could break it . . . but I don't freak if I knock one over either.
 
v
 
 Myth: Once you start using oxygen, you'll need it for the rest of your life.
Truth: Many people have discontinued oxygen use, after other appropriate treatments have taken effect. This can take time, though.  
 
  The above is the kind of thing that is NOT APPLICABLE to CHers.  . . . . because it's aimed at people who use it for totally different reasons.  We have enough problems with oxygen "stigma".  I've personally had friends gravely concerned because I was "on oxygen" (and most they had known who had used same weren't around very long).  We don't use it because of low blood oxygen or breathing problems . . . we use it because it's a vasoconstrictor and can abort (for most of us) horrible attacks, WITHOUT side effects.
 
  And someone please tell me why the length of the hose would reduce the concentration of 02.
 
  02 . . . GET IT!  . . . USE IT! . . . k, I'm through ranting.
 
    Be Safe,
 
 Richard
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