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Cluster Headache Help and Support >> Cluster Headache Specific >> Opinion on oxygen as a preventive?
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Message started by Bassplayer Jim on Sep 3rd, 2010 at 11:53pm

Title: Opinion on oxygen as a preventive?
Post by Bassplayer Jim on Sep 3rd, 2010 at 11:53pm
Hello.

I'm familiar with utilizing oxygen as an abortive, but I'm wondering if anyone here has successfully tried it as a preventive (just oxygen, without other medicinal preventives)?

I'm just curious if anyone has tried it, and if so, has it worked?  And how much, how often?

I've only had the oxygen for a relatively short time (since May), so I'm obviously not as acquainted with the tricks as many of you may be. 

Thank you.

Title: Re: Opinion on oxygen as a preventive?
Post by Guiseppi on Sep 4th, 2010 at 8:35am
I assume you mean using a continuous low flow rate to prevent an attack. Years back several people tried varying ideas on that, most borrowing oxygen concentrators and using a nasal canula set up to get thru the night without a hit. No one seemed to have much success with it.

My highly unprofessional opinion... ;)....it's not a lack of enough oxygen in our system that TRIGGERS  an attack.......but the flooding of our system with pure 02 is what ABORTS  the attack.

Joe

Title: Re: Opinion on oxygen as a preventive?
Post by Bassplayer Jim on Sep 4th, 2010 at 10:46am
Exactly.  If the oxygen can abort it (through dilation or some-such of the blood vessels), wouldn't the same (every so often) help to keep the blood vessels opened and not trigger the attack? 

Unfortunately, virtually nothing seems to be known about definite causes and triggers.  Until we know better what causes attacks, how can we consider prevention?

Thanks.

Title: Re: Opinion on oxygen as a preventive?
Post by Agostino Leyre on Sep 4th, 2010 at 10:48am

Bassplayer Jim wrote on Sep 4th, 2010 at 10:46am:
Exactly.  If the oxygen can abort it (through dilation or some-such of the blood vessels), wouldn't the same (every so often) help to keep the blood vessels opened and not trigger the attack? 

Unfortunately, virtually nothing seems to be known about definite causes and triggers.  Until we know better what causes attacks, how can we consider prevention?

Thanks.

Nonononononono, what you would be doing then, is concentrating your blood with O2, therefore getting your brain to recognize a high concentration of O2 as "normal", then when you get hit, it will take longer for the brain to start shutting off blood flow, thereby making O2 worthless as an abortive.  Just my highly educated guess.  ;)

O2 doesn't "dialate" the blood vessels, an extremely high concentration of O2 is toxic and the brain shuts the blood flow to itself down, that is how it aborts.  Open blood vessels are the enemy. 

Title: Re: Opinion on oxygen as a preventive?
Post by Bassplayer Jim on Sep 4th, 2010 at 10:48am
About the concentrator and the canula, I can understand why that might not work -- everything I've read here says we need the non-breather masks with higher concentrations. 

I was thinking of the regular, full-dose we use to abort attacks, perhaps for 10 minutes, once or twice (or more) times a day as a preventative?  I have no idea, though, and was wondering if anyone has tried anything like that.

Title: Re: Opinion on oxygen as a preventive?
Post by Agostino Leyre on Sep 4th, 2010 at 10:50am

Bassplayer Jim wrote on Sep 4th, 2010 at 10:48am:
About the concentrator and the canula, I can understand why that might not work -- everything I've read here says we need the non-breather masks with higher concentrations. 

I was thinking of the regular, full-dose we use to abort attacks, perhaps for 10 minutes, once or twice (or more) times a day as a preventative?  I have no idea, though, and was wondering if anyone has tried anything like that.

It wont work.

Title: Re: Opinion on oxygen as a preventive?
Post by Bassplayer Jim on Sep 4th, 2010 at 10:50am

Agostino Leyre wrote on Sep 4th, 2010 at 10:48am:

Bassplayer Jim wrote on Sep 4th, 2010 at 10:46am:
Exactly.  If the oxygen can abort it (through dilation or some-such of the blood vessels), wouldn't the same (every so often) help to keep the blood vessels opened and not trigger the attack? 

Unfortunately, virtually nothing seems to be known about definite causes and triggers.  Until we know better what causes attacks, how can we consider prevention?

Thanks.

Nonononononono, what you would be doing then, is concentrating your blood with O2, therefore getting your brain to recognize a high concentration of O2 as "normal", then when you get hit, it will take longer for the brain to start shutting off blood flow, thereby making O2 worthless as an abortive.  Just my highly educated guess.  ;)


I hadn't considered that.  Makes sense, though.  I don't know.  That's why I'm asking.  I'm figuring between all of us, everyone has tried practically everything by now.  :)

Title: Re: Opinion on oxygen as a preventive?
Post by Agostino Leyre on Sep 4th, 2010 at 11:00am
I've learned a lot from others here, and through my own trial and error.  This place saved my life.  For the last 5 years I have had a pretty good grip on my CH.  I've had the shortest less intense cycles while taking the fewest meds I've ever had.  Being patient and researching just what the stuff that we take actually does to our bodies and brain chemistry is very important.  I hope that you are able to be better armed against our common enemy and wish you success in our never ending war.

Title: Re: Opinion on oxygen as a preventive?
Post by Callico on Sep 4th, 2010 at 12:45pm
Keep thinking and looking.  You kind of went down the wrong trail on this one, but you aren't the first one either. :-[  Don't let that stop you from asking questions.  As Thomas just said to you, you have to keep learning what the varied meds and treatments do to your body so  you can learn what does work for you and what does not.  Keep it up!

Jerry

Title: Re: Opinion on oxygen as a preventive?
Post by Mike NZ on Sep 4th, 2010 at 5:11pm

Agostino Leyre wrote on Sep 4th, 2010 at 10:48am:
Nonononononono, what you would be doing then, is concentrating your blood with O2, therefore getting your brain to recognize a high concentration of O2 as "normal", then when you get hit, it will take longer for the brain to start shutting off blood flow, thereby making O2 worthless as an abortive.  Just my highly educated guess.  ;)

O2 doesn't "dialate" the blood vessels, an extremely high concentration of O2 is toxic and the brain shuts the blood flow to itself down, that is how it aborts.  Open blood vessels are the enemy. 


This got me thinking. Since the amount of oxygen in the air decreases with altitude, the percentage increase in breathing pure oxygen will therefore be even greater at altitude. I wonder if this makes using oxygen to abort CHs even more effective, with people living half way up a mountain becoming pain free quicker than people at sea level?

Title: Re: Opinion on oxygen as a preventive?
Post by Linda_Howell on Sep 4th, 2010 at 5:31pm
hmmm.  If that is true, then I say we all move to Denver.   One mile above sea level for those of you who don't know.    ;D


Title: Re: Opinion on oxygen as a preventive?
Post by Mike NZ on Sep 5th, 2010 at 3:15am

Linda_Howell wrote on Sep 4th, 2010 at 5:31pm:
hmmm.  If that is true, then I say we all move to Denver.   One mile above sea level for those of you who don't know.    ;D


I could do a test if I went there as I'm currently 7 metres above sea level so the difference, if there is one, should be easy to spot.

Title: Re: Opinion on oxygen as a preventive?
Post by Ginger S. on Sep 5th, 2010 at 10:41am
I had thought the same thing until I gave it a two week test.

I used to live in Helena Montana elevation 3993 before moving to Wilkes Barre Pennsylvania elevation 1293 closer to my family.  I didn't get hit with CH until I was 34 after moving back east.  I'd done some research and thought given what I'd read that the elevation difference might have triggered the CH.  So I went back to Montana for a two week visit during that time I still had to do the scramble for the Imitrex MANY times, the change to a higher elevation didn't affect my CH one way or another, still got nailed at basically the same frequency. 

However the plane ride was a nasty trigger and for that matter when going on long road trips and swiftly changing elevations (air pressure) I have noted that this is a NASTY trigger as well. 

Now if I could just put my head in a constant regulated pressure jar maybe I could cut down on a few ch hits, but this still wouldn't prevent them all.  :-/

Title: Re: Opinion on oxygen as a preventive?
Post by +Danny Boy+ on Sep 5th, 2010 at 10:03pm

Linda_Howell wrote on Sep 4th, 2010 at 5:31pm:
hmmm.  If that is true, then I say we all move to Denver.   One mile above sea level for those of you who don't know.    ;D

I can honestly say that while in Denver during a cycle my ch's doubled in intensity. Got back to Minnesota and they went back to normal or whatever normal is during a cluster. I hate Denver!

Title: Re: Opinion on oxygen as a preventive?
Post by Batch on Sep 7th, 2010 at 3:52pm
Jim,

I'm likely one of the strongest and most vocal proponents of using oxygen therapy as an abortive for cluster headache.  It is so effective for me that with the exception of an occasional snort of sumatriptan during airline travel or when trapped away from a source of oxygen, oxygen therapy at flow rates that support hyperventilation is all I use. 

I take no preventatives, but I do take a regimen of calcium citrate tablets that also contain vitamin D3, magnesium and zinc washed down with a couple glasses of homemade sugar free lemonade, limeade, or Baja Bob's sugar free margarita mix when I start into a high cycle. 

I find this regimen lowers the frequency and intensity of my cluster headaches better than 90% of the time.   It also appears to work more effectively if taken just prior to a meal as it acts as a buffer on the stomach's gastric juices when the acid content is highest.   This buffering mechanism helps to elevate the low arterial pH that usually accompanies my high cycles.

Now here's the kicker...  As with nearly all methods of intervention for cluster headaches, there are exceptions.  The high cycles I experience in the spring and fall tend to be more severe than at other times of the year.  These cycles tend to last 10 days to two weeks and are characterized by an increase in the frequency of my cluster headaches with very fast onset and rise times to higher pain intensity levels... like two to three minutes from no pain to a 7 or 8 heavy hitter on the 10-Point Headache Pain Scale. 

For what it's worth these two particular high cycle times coincide with the increase in frequency of cycle start times reported by episodic sufferers who took the cluster headache survey in December of 2008.  A plot of this data is shown in the graph below:

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During these two periods, rapid aborts, even with oxygen therapy at flow rates that support hyperventilation, can become scarce a hen's teeth no matter how early I start.   Under normal conditions I average of 3 to 4 minutes for an abort, but during these two time periods, my abort times jump up to an average of 8 minutes if I start early and 12 minutes if the cluster headache hits while sleeping and has a head start up the pain scale.

The only possible way I'm aware of where oxygen therapy might have any measurable efficacy as a preventative involves using this method as an abortive at oxygen flow rates that support hyperventilation on every attack no matter how minor.  We saw this preventative effect during the analysis of abort data from a small informal pilot study of this method of oxygen therapy.

The exact mechanism or mechanisms involved are unclear, but it appears to involve a cumulative effect as the frequency, intensity and abort times experienced by all 7 participants, while using this method of oxygen therapy, all tended lower over the 8-week data collection period.  One possible explanation other than improved lung functions from this aggressive method of oxygen therapy is a condition called vascular toning...

During the pilot study we collected data on 366 aborts with this method of oxygen therapy from seven cluster headache sufferers, 6 chronic and 1 episodic.  When we analyzed the abort data, we found that all seven participants experienced a reduction in the frequency, intensity, and duration of their attacks with continued and repeated use of oxygen therapy at flow rates that support hyperventilation...

The following chart illustrates the weekly averages for frequency of attacks, pain intensity and abort times from the first week through Week-8 of the data collection period from one of the participants.

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It's also significant to note that the weekly average pain intensity and abort times dropped continuously from the first abort at the start of this data collection period to the last on Week-8.  This same pattern was also consistent among the other participants.

The overall efficacy of this method of oxygen therapy was better than 99% with 365 successful aborts out of 366 attempts logged by the 7 participants and an overall average abort time of 7 minutes for attacks at pain levels 3 through 9.

As you can also see there was an initial spike in the weekly average frequency of attacks through week-4 then a rapid drop through week-8.  Again, this pattern was consistent for all seven participants and it helped identify a phenomenon we now call re-attacks. Nearly all re-attacks occurred within a time period between 15 and 45 minutes following a successful abort.

What appears to be happening with re-attacks while using this method of oxygen therapy is the abort times are so fast, they abort the pain of the cluster headache, but the total time in hyperoxia is so short (<10 minutes), it's not sufficient to abort the triggering mechanism.  When the effects of hyperoxia and respiratory alkalosis dissipate, this takes 15 to 20 minutes after completing this method of therapy, and the triggering mechanism is still present, the attack resumes.

After a further analysis of the abort data for all flow rates, we found there were very few instances of re-attacks when abort times were between 15 and 20 minutes and none if the abort times were 20 minutes or longer.

Based on this information we modified the therapy procedures to add additional time breathing 100% oxygen after the abort at a normal respiration rates (flow rates of 7 to 9 liters/minute) to bring the total time in hyperoxia up to 15 minutes.

The concept of vascular toning, also called cardiovascular toning, isn't new. Physicians and nutritionists recommend daily aerobic workouts to strengthen the cardiovascular system.  Vascular toning involves strengthening and increasing the elasticity of the smooth muscles that line the arteries, arterioles and capillaries in and around the trigeminal nerve. 

I'm of the opinion that if these vascular structures are physically toned up by repeated use of this aggressive method of oxygen therapy, they become more resistant to the triggering mechanism.

It's kind of like doing curls with a dumb bell weight to strengthen the biceps.  Do reps for 5 minutes 4 to 5 times a day and your biceps will grow in size, strength and overall muscle tone.

The same thing happens to the muscles lining our arteries every time we hyperventilate long enough with oxygen therapy to push our circulatory and respiratory systems into respiratory alkalosis triggering the artery and capillary muscles to contract in vasoconstriction...

I've also found the reverse of vascular toning may be true as well...  By sitting around doing nothing about low-level headaches for long periods of time, the arteries and capillaries in and around my trigeminal nerve may be in a state of complete dilation and losing muscle tone in the process...   

Even if this method of oxygen therapy is not fully effective as a preventative in reducing the frequency and intensity of cluster headache, I think it works well enough to be worth a try as an abortive...  Moreover, when coupled with the regimen of calcium citrate tablets taken with sugar free lemonade, limeade, or margarita mix, the results are encouraging.

Hope this helps.

Take care,

V/R, Batch


Title: Re: Opinion on oxygen as a preventive?
Post by Bassplayer Jim on Oct 8th, 2010 at 9:21pm
Thanks.

Title: Re: Opinion on oxygen as a preventive?
Post by Jim L on Oct 11th, 2010 at 11:41am
Impressive data, Batch.  I quickly learned that breathing 02 for ten minutes or so after an attack helps prevent a rebound. 

One thing I thought I'd mention is my experience with sleep apnea and headaches.  The results of my sleep test showed that my blood oxygen level was getting dangerously low (to about 80% saturation).  Once on CPAP, those morning headaches went away (I don't think they were CH headaches or shadows, by the way) -- This was a year before I was diagnosed with CH and well before the abnormally bad cycle I had this past summer.  Anway, low oxygen levels in the blood can cause headaches, but NORMAL breathing tends to keep most people's blood O2 levels in a healthy range.

Jim

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