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Cluster Headache Help and Support >> Medications,  Treatments,  Therapies >> More O2 advice please....
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Message started by Matt1993 on Jan 22nd, 2011 at 2:28pm

Title: More O2 advice please....
Post by Matt1993 on Jan 22nd, 2011 at 2:28pm
Hello everyone.  I'm a newbie that just registered last night.  I found a lot of great advice on this site, but I'm running into some new problems that maybe some of you have had before.  My Dr. has started me on a new therapy that includes O2, prednesone and verapamil.  I aborted a CH last night using 15LPM and a non-re breather and I thought I had found a miracle.  Well, for me the O2 has just made me have more CHs.  They are far better on the KIP scale but I feel handcuffed to the house now.  I used to use the nasal Imitrex when the beast came and I would wander the neighborhood till it kicked in.  My Dr. says no more Imitrex, says they cause rebound headaches and it raises my blood pressure to dangerous levels.  Problem is it works.  I would use one and I wouldn't have another one till the next night.  Now that I use the O2.  It aborts the CH but I wake up 1-2 hours later with another.  I went thru two "E" tanks in the last 15 hours and am having CH #4.  It is bearable maybe a 4 on the KIP scale, but I'm not sure what is worse. 4 mild ones or 1 big one.  I felt like I could go places as long as I had an Imitrex w/me.  I keep one in each car, one at the office and the rest at home.
I want the O2 to work, but like everything else in life these days the quick fix seems more desirable.  Do I look into getting the higher flow regulator and an on-demand mask or what?  I don't know how much more my family can take.  Two weeks ago I was laid up with the flu for a week and now I'm in the living room sucking on O2 every two hours!  Anyone experienced this?  Thanks for any input.

Title: Re: More O2 advice please....
Post by vietvet2tours on Jan 22nd, 2011 at 3:27pm
Neither oxygen nor imtrex are prevents they are abortives.

              Potter

Title: Re: More O2 advice please....
Post by Mike NZ on Jan 22nd, 2011 at 4:21pm
Hi Matt

With your prednisione is this a short term (about 2 weeks) dose that starts high (about 60mg) and tapers off? This is normally done to act as a preventive until your verapamil builds up in your system which can take about two weeks. Long term use of prednisione can cause problems so it is normally just used for a few weeks.

With the verapamil what dose are you on? Many people typically get relief at 360-480mg per day but some go much higher than that, even as high as 1000mg. Dosage changes take about 10 days to become effective and work with your doctor when changing dosage.

For your oxygen use, do read the instructions on the link on the left which gives very detailed infomation about how to use it effectively.

What seems to work for people who get the rebound CHs is to stay on the oxygen for a few minutes after the pain has gone (some up to 10 minutes). For others drinking an energy drink like Red Bull (anything with taurine and caffeine) works too.

I've got two regulators, one does 15lpm and the other 25lpm. I can abort with both, but my average time at 15lpm is 12 minutes and at 25lpm it's 6 (so you can imagine which is my favourite regulator).

When going out I've a small oxygen cylinder that fits in a backpack. This means I can have it with me so I'm never far from it.


Title: Re: More O2 advice please....
Post by Guiseppi on Jan 22nd, 2011 at 9:31pm
I have a similar problem to you, mine would come back within 10-20 minutes of shutting off the 02. I used to use oral cafergot as a 1-2 punch, 02 would knock it down, cafergot would buy me up to 12 hours. Now I chug an energy drink, I prefer sugar free red bull, with my 02. Buys me several hours.

Ask your doc about verapamil as a prevent. A prevent is a med you take daily to reduce the number and intensity of your attacks. I use lithium blocks 60-70% of my attacks, verapamil is the typical first round prevent try. The good news is it also lowers your blood pressure, might be an added benefit for you.

Joe

Title: Re: More O2 advice please....
Post by Val_ on Jan 22nd, 2011 at 11:59pm
Hi Matt,

I find that the 25LPM regulator works Much better than the 15.  My O2 provider gives me a regulator that goes up to 15 - I found one online that goes higher. 
Another thing - Melatonin is something you may consider taking before you go to bed... it keeps the night hits to a minimum for some.  People take between 3-18mg (start low, see what they need) per night - I found this helped a lot!  It is over-the-counter in the US.  Talk to your doctor about it?

I was also one of those people who needed upwards of 720mg of Verapamil to help (at docs ordering to try, with time at each increment to see if it helped, and regular monitoring EKGs), and it lowered my blood pressure too!  The BP seemed to skyrocket before, especially with multiple headaches.  It took me a while to figure out the preventative/ abortive combo that seemed to work best.  Hang in there!!   

Val

Title: Re: More O2 advice please....
Post by Batch on Jan 23rd, 2011 at 7:03am
Matt,

What you're experiencing with oxygen therapy is very common.  Most CH'ers experience an increase in the frequency of their cluster headaches after starting oxygen therapy. 

Fortunately this initial increase in frequency is usually accompanied by a decrease in intensity and the frequency of attacks starts to drop after a couple weeks of using oxygen therapy.

If you're having more than 3 cluster headaches a day, you're money ahead ordering at least three of the larger M-size oxygen cylinders as a one month supply.  The average cost of an M-size oxygen cylinder refill is $30 before insurance and you should get 20 to 25 aborts per cylinder.  An E-size oxygen cylinder costs $20 before insurance and they're usually only good for 3 to 4 aborts.  Do the math...  Oxygen therapy is also far safer than the triptans and a lot less expensive.

Try asking  your home oxygen supplier for a regulator that's capable of 25 liters/minute when you ask for the three M-size cylinders.  If they refuse, ask your doc to phone in a change to your Rx for a flow rate of 25 liters/minute and for the larger M-size oxygen cylinders.

A flow rate of 25 liters/minute will support hyperventilation if you're able to remain still during the therapy.  Most successful oxygen therapy users buy their own regulators capable of 0 to 25 liters/minute and some go for even higher flow rates with regulators capable of 0 to 60 liters/minute.  They also use the O2PTIMASK™ kit available from the CH.com store at the left for $27.50.  I've had the same one for nearly 3 years and it works just fine.

You can always buy your own 0-25 liter/minute regulator. They're readily available over the Internet.  Make sure you order one with a CGA-540 fitting to match the fill fitting on the larger M-size oxygen cylinders.

The photo below shows my home oxygen therapy kit with one of the 0 to 60 liter/minute InGage™ regulators from Flotec.

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE

As you can see, I use both the O2PTIMASK™ and a demand valve.  Both are equally effective and each has it's advantages.  You can also see from the tally on the sticky that I got 30 aborts from one M-size oxygen cylinder.  I've also found breathing straight from the 22mm coupler on the O2PTIMASK™ and demand valve provides less resistance at the higher respiration rates that support hyperventilation.

As far as feeling trapped at home to stay near your oxygen there are a few things you can try.

The first is to get a "roadie" or portable oxygen cylinder.  When you ask your supplier for the M-size oxygen cylinder tell them you still want to keep at least 2 or 3 of the E-size oxygen cylinders for local travel, work and other activities away from home.

I purchased the aluminum M60 shown below as my roadie and refill it from the larger M-size cylinders.  It holds 1700 liters when fully charged and weighs 23 lbs.  It's also good for 10 to 12 aborts so it gives me a good three day supply away from home.

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE

You can also try a change in diet.  Cut back on red meat and bread and instead eat more cold water fish, chicken, lots of green veggies and fresh fruit. 

You might also ask your doc about taking calcium citrate tablets that contain vitamin D3, magnesium and zinc washed down with lemonade.  This combination acts as a buffering regimen that many of us found tends to decrease the frequency and intensity of our cluster headaches.

When you call your doc, ask about taking up to 10,000I.U. vitamin D3 along with 2000mg. Omega 3 Fish Oil a day.  This combination acts as an anti-inflammatory regimen that some of us have found decreases the frequency of our cluster headaches.

Hope this helps.

Take care,

V/R, Batch

Title: Re: More O2 advice please....
Post by Guiseppi on Jan 23rd, 2011 at 9:13am
Matt, Batch's posts are long and technical, read them! ;D He is the resident guru on oxygen and has done much to push oxygen therapy to where it is today, was hoping he'd chime in on these threads!

Joe

Title: Re: More O2 advice please....
Post by Matt1993 on Jan 23rd, 2011 at 1:15pm
Wow, thanks Batch.  I'm so glad all of you have chimed in.  I actually slept through the night last night.  I haven't had an uninterrupted nights sleep in over a week.  Mike NZ you are right I was given 60mg of Prednisone and maybe that is kicking in as well.  The sun is shinning and I think I will jump on the bike and go for a ride.  What a difference one good night of sleep can make.  Thanks all and maybe another PF night is in my future! :)

Title: Re: More O2 advice please....
Post by wimsey1 on Jan 24th, 2011 at 8:35am

Quote:
What a difference one good night of sleep can make.


That's the truth. May you have many, many more! lance

Title: Re: More O2 advice please....
Post by thebbz on Feb 1st, 2011 at 2:23pm

Quote:
Cut back on red meat and bread and instead eat more cold water fish, chicken, lots of green veggies and fresh fruit. 

Holy crap, I would surely die!!!!!!
j/k
all the best
good advice above
the bb

Title: Re: More O2 advice please....
Post by Brew on Feb 1st, 2011 at 3:02pm
Just proves that eating is a fatal disease.

Title: Re: More O2 advice please....
Post by Guiseppi on Feb 1st, 2011 at 6:28pm

Brew wrote on Feb 1st, 2011 at 3:02pm:
Just proves that eating is a fatal disease.



More specifically Brew:

Life....is a sexually transmitted disease.....that is 100% fatal! Get past that and everything else is a walk in the park! ;D

joe

Title: Re: More O2 advice please....
Post by Brew on Feb 1st, 2011 at 6:38pm
Got it.

Eating, then, is a symptom of a sexually transmitted disease that is 100% fatal.

Title: Re: More O2 advice please....
Post by Guiseppi on Feb 1st, 2011 at 7:01pm

Brew wrote on Feb 1st, 2011 at 6:38pm:
Got it.

Eating, then, is a symptom of a sexually transmitted disease that is 100% fatal.



The mere fact that this totally makes sense...deeply bothers me! ;D

Joe

Title: Re: More O2 advice please....
Post by Brew on Feb 1st, 2011 at 7:10pm

Guiseppi wrote on Feb 1st, 2011 at 7:01pm:
The mere fact that this totally makes sense...deeply bothers me! ;D

Joe

You're not alone.

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