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        Cluster Headache Help and Support >> Medications, Treatments, Therapies >> Oxygen delay not abort?
        
(Message started by: SchwarzenSchafe on Apr 24^th, 2007, 4:30pm)

Title: Oxygen delay not abort?
Post by SchwarzenSchafe on Apr 24^th, 2007, 4:30pm

I found this site several months ago, and lucky me it's taken a long time to reach my next cycle. But... here it is. Daily, in the morning. I'm about a week in.

This is my first opportunity to use oxygen, and it works great. I'm so happy, within 10 minutes, every time, gone. But the last few days they come back within an hour. Yesterday I had 3 10 minute sessions, today twice and I'm contemplating another, I'm being dogged by shadows and I'm trying to work.

Is it normal for it to only delay them? I mean, it's great that I don't have any 'smash my head into the floor' kind of pain, but I'm still feeling the energy drain, foggy, tired, off-balance lousiness that normally comes with a cycle.

Title: Re: Oxygen delay not abort?
Post by BMoneeTheMoneeMan on Apr 24^th, 2007, 5:05pm

My Doctor who admittedly doesnt know much about clusters says this is true.
I kind of thought of it as a new headache, not a delay of the old one. One thing you might try is to stay on the O2 for 2 to 4 minutes after the pain has gone away. This seems to help me, and I notice that whenever I stop the O2 before the cluster has completely gone, it ramps back up.

I generally go down to 11LPM or so for 2 to 4 minutes and that does the trick.....most of the time.

PF wishes
B$

Title: Re: Oxygen delay not abort?
Post by Guiseppi on Apr 24^th, 2007, 5:16pm

I have the same problem. I tried keeping the 02 on for 10 minutes after it subsided, weaning off the 02 slowly, no matter how I did it I'd get hit within about 20 minutes of shutting off the 02. Someone explained in a posting that 20 minutes was about how long it took for my 02 levels in my bloodstream to go down.

Now when a headache starts I pop a cafergot pill. It's an old school CH medicine that I tried many eons ago but had very little success with because it's oral so it took too long to get into my system to abort an attack. Now I pop the cafergot, and then fire up the 02. The 02 aborts the headache, the cafergot buys me up to 12 hours pain free time. When on cycle I use lithium as a prevent so I don't have that many break thrus after the first few weeks.

I carry a handgun as part of my job. The advantage to cafergot is it's not a controlled substance, and doesn't affect my ability to work. The only physical affect I get is like having drank 3-4 cups of coffee. Hope it's helpful for you.

Guiseppi

Title: Re: Oxygen delay not abort?
Post by chrisw on Apr 24^th, 2007, 6:39pm

I get the same thing, the O2 works great almost everytime, but within an hour or so the beast is back.

Good luck,
chrisw

Title: Re: Oxygen delay not abort?
Post by SchwarzenSchafe on Apr 25^th, 2007, 12:53am

Thanks, I think tomorrow I'll try an extra 5 minutes. It's getting expensive to use 3+ times per day, but I guess it sure beats the alternative.

Title: Re: Oxygen delay not abort?
Post by Bob_Johnson on Apr 25^th, 2007, 11:05am

When oxygen first hit the clinical literature as an abortive the initial reports also noted this response: not fully aborting an attack but delaying it until the oxygen was stopped.

Unfortunately, in the enthusiasm about the positive effects, this unwanted side effect was lost from view. We now see many positive comments/recommendations but it has been a long time since I can recall anyone mentioning this delay issue.

Title: Re: Oxygen delay not abort?
Post by Batch on Apr 25^th, 2007, 1:48pm

Glad you found O2 works as a cluster headache abortive. The good news is 100% O2 works for most of us CHers most of the time as a reliable and cost effective abortive... The bad news is 100% O2 only works as an abortive, and not a preventative.

Staying on 100% O2 a little longer after the pain subsides may work for some, but it comes at the expense of depleting your on hand O2 supply.

What you need is a functioning preventative that hopefully lowers the frequency and intensity of your cluster headache attacks. You need to see your doctor about this. We are all wired differently when it comes to preventatives so there is no magic silver bullet preventative that works for all of us. A preventative that works for one will likely not work for another, or vary significantly in effectiveness.

If you are lucky enough to have a doc that is willing to work with you in finding an effective cluster headache preventative, take along a list of preventatives from this site or O.U.C.H. and a record of your cluster headache attacks. There are a number of forms on the net you can print out and use. It’s difficult to keep good records when you’re getting hit several times a day, but try to keep it accurate and up to date. A well-kept record of your attacks can help point out the preventative that works best.

100% Oxygen works it's abortive magic by acting as a vasoconstrictor. By breathing 100% O2 at 7 to 10 liters/minute, you generate higher than normal concentrations of O2 in the lungs and bloodstream. This shrinks the vascular systems that surround the trigeminal nerve that cause the pain.

A condition called respiratory alkalosis also acts as a vasoconstrictor. You can achieve this temporary condition by hyperventilating on 100% O2 at 15 liters/minute. This works out to 5 respiratory cycles (breaths) every 10 seconds or 30 cycles/minute. The result is respiratory alkalosis. This temporary condition is a direct result of driving the level of CO2 in the blood stream down below normal (this is good by the way) but make sure you’ve removed the straps from your NRB mask and hold it in place with your hand.

Imitrex (sumatriptan succinate) is a vasoconstrictor. It is also an example of a drug that some CHers use as both an abortive and preventative. There are other classes of cluster headache preventative drugs that work to block or limit the transmission of pain. The neurologists at the National Institutes of Health (NIH) in Bethesda, MD have me on Neurontin (gabapentin). It works for me but there’s no guarantee it will work for you. Again, print out a list of preventatives and work with your doctor to find one that works best for you.

As a final note, there's no free lunch. With the exception of oxygen, nearly all abortive and preventative drugs used by CHers have side effects. What most CHers want is an effective preventative with minimal or acceptable side effects.

Title: Re: Oxygen delay not abort?
Post by mcf69 on Apr 25^th, 2007, 2:11pm

Lately I've been noticing more and more that I have another hit after discontinuing the oxygen, I leave it on for at least 10 minutes past the first, and it still comes back. This is interesting because last cycle I didn't have this problem, also the same way with trex, I can take it, and shortly after I get hit again. Goes back to the old addage that the beast likes to switch tactics from one cycle to another.

Title: Re: Oxygen delay not abort?
Post by TxBasslady on Apr 26^th, 2007, 12:19am

This seems to be pretty common.

I experienced the same thing when I first started using the 02.

What was really important for me, was that I breathe the 02 at my normal rate of breathing, as opposed to breathing the 02 at a faster rate.

When the pain is gone....I reduce the regulator to about 3 and breathe normal breaths for an extra 3-5 minutes.

This saves alot on the 02. I haven't had the CH return for a long time now. It seems it happened more when I first started using it.

Jean

Title: Re: Oxygen delay not abort?
Post by SchwarzenSchafe on Apr 27^th, 2007, 4:04am

Hey, thanks for all the replies. Batch, great post, thanks. I'm 100% against any non-natural drugs. The only preventative I'm willing to try is psilocybin, but haven't been able to yet.

I did try an extra 10 minutes, still came back. The oxygen is getting expensive too, so for this cycle at least I think I'm going to just breathe slowly/normally and stop when it's gone. Honestly, after a decade spent clueless in total agony this is great as it is! I'm loving it!

Title: Re: Oxygen delay not abort?
Post by Batch on Apr 28^th, 2007, 10:40am

OK Black Sheep,

In that case, Kudzu, Melatonin (if you get stung while sleeping), Red Bull or Taurine (one of the active component in Red Bull) may work to decrease the frequency and intensity of the attacks. Again we're all wired differently.

I still say hyperventilating on 100% O2 at 15 lpm will abort the attack faster and use less O2. I wouldn't worry about hyperventilating at these flow rates. I flew carrier based fighters for 17 of the 24 years I served in the U.S. Navy with over 3000 hours on 100% O2. Many of these hours were spent in combat missions where I sucked down loads of 100% O2 at flow rates hight than 15 lpm. I always trapped safely back aboard the ship.

Title: Re: Oxygen delay not abort?
Post by lonedog on May 12^th, 2007, 6:29pm

I have only been on O2 for the last month or so and found that at first it worked better than I could have hoped. Now I'm finding that the CH comes back within 1/2 to 1 hr and if I keep on the O2 they just get worse and worse. I have quit taking O2 and I'm back to having 3's or 4's instead of 8's or 9's and I'm able to go at least 3 hrs at nite to get some sleep. I'm glad that O2 works for some of you but it sure didn't for me.........VERN

Title: Re: Oxygen delay not abort?
Post by ClusterChris on May 12^th, 2007, 9:43pm

This truly goes to show that all meds etc have totally different effects on us. Since using the o2 I have aborted all of my headaches and notr only does it take them away within 5 to 10 minutes, My pf time between hits has went from a religious every 4 hours to now getting hit once every 7 to 12 hours. I usually leave it on for about 20 minutes to half hour each time though even though my pain is gone within the first ten minutes. By then I usually fly up the stairs (o2 is kept in the basement) and start jumping around like my 2 year old. I get pretty hyper when i leave it on for so long.

A funny thing I saw today while going out of town for dinner was an oxygen bar. People actually pay money to go into this place and suck back a little o2. I couldn't believe it. I felt like running in there and telling everyone to come to my house and I'll give it to them for half price lol. It also pissed me off a bit because of all the trouble I had to go through to get it prescribed and here they let places open up shop and sell the shit!!

Ok thats enough for now!
Take care guys and gals!
Chris

Title: Re: Oxygen delay not abort?
Post by SchwarzenSchafe on Jun 6^th, 2007, 1:47am

Update...

I have some more experience with the O2 now. What works for me is doing squats (squat down, stand up) while holding the mask to my face and breathing hard with a very high flow rate works best. Just for a few minutes, then sit down and start running the valve out as my breathing slows down, then do 5 minutes with a resting heart/breathing rate. So far that kills every single one, although often they still come back.

I did run my single tank empty last week after closing time though, and get caught with no help, rolling around in pain. That sure sucked, first real hit of the whole cycle that I couldn't abort.

Title: Re: Oxygen delay not abort?
Post by BlueMeanie on Jun 6^th, 2007, 3:37pm

For me, all abortives stop the hit too soon not allowing the hypothalamjiggy to fix itself. :( Back in the day before trex and 02 I would ride them out and just about die, but I always got more time off between hits. With o2, they come back the soonest. Trex gives me more time between hits. Like others have said, I guess prevents will help it to stay away longer. Even though I get more hits per day, I still prefer to abort rather than suffer. Hang in there, the cycle will be over before you know it. Sending vibes.

Title: Re: Oxygen delay not abort?
Post by GrandPotentate on Jun 6^th, 2007, 11:06pm

We're all wired differently.

I never noticed any rebound when doing O2. It was pretty good to me, but was started later in a cycle when hits became less frequent anyway.

This last cycle, I got to ride through cold-turkey, cause I moved and got a new doc who knows diddly and has no sense of urgency. But to the point, the hits build from several a week to several a day during the first two weeks. So even without o2, they were coming more frequently. Had I been on an abortive, they would've seemed like rebounds. But that's my wiring.

Jon

Title: Re: Oxygen delay not abort?
Post by burnt-toast on Jun 7^th, 2007, 7:25am

I'm glad someone brought this up. For a little over a year I used Oxygen heavily and found that roughly 50% of the time Oxygen aborted but clearly only delayed attacks until shortly after oxygen use stopped.

Full abort/relief (for periods long enough to at least return to sleep) occurred roughly 10% of the time Oxygen was used.

Complete failure to abort/relieve attacks was experienced roughly 40% of the time. Note nearly all of these instances were associated with a second or third use of Oxygen in a night/or in addressing a series of attacks with a notable increase in severity/length frequently experienced when Oxygen was used multiple times.

I know Oxygen comes highly recommend because it helps many sufferers. I wish I could count myself among them, but from my experience Oxygen didn't 'get it done.

Tom

Title: Re: Oxygen delay not abort?
Post by lonedog on Jun 7^th, 2007, 8:15am

Morning:

My experience with O2 almost mirrors Tom's. Wish it didn't but it does.................Vern

Title: Re: Oxygen delay not abort?
Post by Wartooth on Jun 7^th, 2007, 1:54pm

I noticed through reading the post on the main that a rebreather is necessary when using o2. All I have is the mask. Does having the bag on the end of the mask make a big difference?

I have not had much luck with the O2. Could it be that I usually set it at 8, per my doc recommendation and should be higher?

I have not tried it much, as I always want to use the imitrex...

Title: Re: Oxygen delay not abort?
Post by wildhaus on Jun 7^th, 2007, 2:18pm

on 06/07/07 at 13:54:43, Wartooth wrote:

Hi Wartooth,

look into
http://www.ouch-us.org/medications/oxygen/o2info.shtml
and into:
http://www.ouch-us.org/medications/oxygen/o2links.htm

if you need more help just let us know we will try and
help you as much as we can........

Michael

Title: Re: Oxygen delay not abort?
Post by ClusterChuck on Jun 7^th, 2007, 3:00pm

on 06/07/07 at 13:54:43, Wartooth wrote:

All I have is the mask. Does having the bag on the end of the mask make a big difference?

I have not had much luck with the O2. Could it be that I usually set it at 8, per my doc recommendation and should be higher?

The BEST mask can be ordered online at www.clustermasx.com. It is designed and marketed by one of our own, Ben, in UK. It is well worth the 25 USD that it costs!

And YES, 8 LPM is the minimum flow rate to work. If it does not work, at that rate, go higher. Most of us use 15 LPM, at first, and then many drop to a lower rate as the pain subsides. Trial and error, my friend, trial and error!

Good luck,
Chuck