I've been diagnosed for about 4 years.

My O2 setup is GOX cylinders, Flotec 0-60LPM regulator, and Optimask purchased here. (Best money I ever spent) I use the mouthpiece.

My current cycle has been the longest, weirdest, and probably most miserable since diagnosis. Its going on 2.5 months now, and unlike previous cycles that consisted of usually one nocturnal attack an hour after going to bed, I'm getting attacks about every 4 to 6 hours.

Anyway... The O2 always works to immediately abort the pain, but at least 80 - 90% of the time I'm getting re-attacks.

I always stay on the O2 a minimum of 12 minutes. I have tried rigorous hyperventilation as long as I could stand it at LPMs much higher than 15LPM at the beginning of the 12 minutes which don't seem to make a difference.

I've also tried just staying on the O2 at 15LPM for longer - 20 minutes.

Another thing I notice is that the O2 abort doesn't interrupt the attack, it resets it. The reattack will be a normal CH attack that will last as long as any CH attack if not longer untreated. What seems to end up happening is I spend all day on the O2, holding off the attacks until I can take a Imitrex injection (works every time for at least 4 hours) but I can only use that twice.

I've also tried freecycling - letting the cold O2 blow out through my nasal cavity.

I'm just looking for other ideas - I really want to be able to actually abort attacks without re-attacks.

I had the same problem. 02 would always kill it, but it always came right back. I now use oral cafergot in combo with my 02. The 02 kills it, the cafergot will buy me up to 12 hours. Would work well for your daytime hits since the cafergot does jack you up just a bit. Cafergot is an old school CH med that fell out of favor because it took too long to get into your system. In combination with 02 it's worked great for me.

Since I started posting this combo, several people have posted similar results chugging an energy drink as they start up the 02. I intend to try that next cycle.

Joe

Thanks. I was looking that up. It says it can cause dependency. Can Imitrex also cause dependency? More specifically, it said that cessation causes or triggers attacks - is this true of Imitrex also?

1968eric wrote on Jul 25^th, 2009 at 8:32pm:

Thanks. I was looking that up. It says it can cause dependency. Can Imitrex also cause dependency? More specifically, it said that cessation causes or triggers attacks - is this true of Imitrex also?

Trex can cause rebound headaches.

I dunno about the other stuff but if you can handle energy drinks I reccomend you chug one and do the 02, because it helps a hell of a lot. :)

Can you give me an example of an energy drink? Is it just the caffeine I'm after?

I just gave up all soda, artificial sweetener, and basically anything else that takes a chemistry major to read the ingredients. But I do drink tea. Would something herbal fill the bill?

Must be taurine with caffeine I believe.

MattyAA wrote on Jul 26^th, 2009 at 6:24am:

Must be taurine with caffeine I believe.

Yes, if it doesn't have those two, it won't do a lot of good.

I drink Jolt, or Monster. But what you drink is up to you, you want at least 1000mg of Taurine, I think? Someone might be able to tell you exactly how much you need.

5 hour energy shots and things like that don't work at all for me I've found. There isn't enough taurine in them. I tried supplements, it still worked best in liquid form. (My guess is due to it being absorbed faster, but I could be wrong...)

You've got the right oxygen therapy equipment...  and it sounds like you're using it properly...  

Re-attacks are very common for many of us using oxygen therapy during the first 3 to 5 weeks of using it at flow rates that support hyperventilation...  They are even more pronounced for folks using higher oxygen flow rates and hyperventilating all the way to an abort as this results in a rapid abort of the cluster headache pain, but not necessarily an abort of the triggering mechanism.  

Based on data from over 650 aborts we've collected over the last two years in the pilot study of oxygen therapy flow rates that support hyperventilation, the occurrence re-attacks tends to peak by week 3 to week 4 of this method of therapy and then drop to zero by week 8.  You'll still have attacks after that, but at a much reduced frequency.

It's just a theory at this point, but all the data collected so far suggests vascular toning not only prevents the occurrence of re-attacks but also lowers the overall frequency, intensity, and time to abort for cluster headache attacks by week 8.

Vascular toning is no different than if you took a dumb bell and worked out with it doing curls for 5 minutes per session, 6 to 8 times a day.  At the end of 8 weeks, your biceps would be larger, stronger, and toned up...  The same thing happens to the smooth muscles lining the arteries and capillaries in and around your trigeminal nerve.  Once these arteries and capillaries are toned up, they tend to be more resistant to the dilation signaled by the cluster headache triggering mechanism.

A disciplined approach of using oxygen therapy on each and every cluster headache attack up to 6 or 8 sessions a day using flow rates that support hyperventilation and each lasting a minimum of 5 minutes will cause enough repeated vasoconstriction to strengthen and tone the smooth muscles lining these arteries and capillaries.

If you've been using this method of oxygen therapy on every attack and it's been less than 4 weeks with no change in the frequency then patience grasshopper...  

If it's been over 4 weeks with no decline in the frequency of re-attacks, then it's possible you have another condition that's interfering with the vasoconstrictive effects of this method of oxygen therapy.

A lower than normal serum/arterial pH (high acid level) will interfere with oxygen therapy no matter how it's administered.  Normal arterial pH is 7.4 (7.35 to 7.45).  An arterial pH below this range can be caused by a number of medical conditions that are best diagnosed by your doctor.  Just be aware that a single pH measurement made during a lab test will not accurately reflect your actual pH as is varies from day to day and throughout each day.  

You can pick up some pH test strips from pH ION over the Internet and test your saliva pH three times a day.  If you do this using the same procedure before breakfast, before lunch, and prior to bedtime before you brush your teeth for a week you'll have a better pH level profile...

If you also take a saliva pH reading as soon as you feel an attack approaching, or as soon as you wake up with an attack, you should see a reading below your daily pH average for that day.  If you take a second saliva pH reading 5 minutes after you complete oxygen therapy with an abort, you should see a pH reading that is equal to or slightly higher than your daily average.  

The following chart illustrates the relationship between the pH at the start of my cluster headache attacks that woke me up from sleep and my daily pH average levels.

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The green line was the daily average pH of my saliva.  The red line is the pH measurement taken as soon as I woke up with an attack and the blue line, my saliva pH taken 5 minutes after the abort and completion of oxygen therapy.  As you can see, oxygen therapy at flow rates that support hyperventilation were able to raise my pH by an average of 0.4 during each session.

If you're still having re-attacks and have difficulty in getting enough good sleep, ask your doctor for a prescription for generic imitrex 50mg tabs a last resort.  I used a pill splitter to split the 50 mg tabs in half and took one at the start of my oxygen therapy.  I got the fast abort with the oxygen and as the half life of the 25mg imitrex tablet is 2 hours, this regimen kept the beast away for at least 4 hours and I was able to get some real sleep.

Hope this helps.

Take care,

V/R, Batch

As far as the energy drinks go -- check the lable - it needs to have at least 1000mg of taurine in it. Chug it. Sometimes it will abort the hit if you get to it on the very first.

Cafergot IS an OLD med, but I've used it forever and it seems to have longer lasting effects than some of the other aborts. As far as being habit forming - ummmm - can't see that one. I take it when I need it and don't take it otherwise. Never had a problem there. After I got on the demand valve with the 02 I about quit taking it altogether until I had nasal surgery and couldn't use my mask for the 02. There was some talk years ago about it causing heart valve damage, but that kinda died out or I never heard any more about it. Had mine checked and it was fine and I've taken a truck load of it. Might be worth a try.

Listen to Pete on the 02. If you're still having trouble you might get on Skype and 'show' him how you're using it to make sure you're doing it properly. That's what I had to do. He's real good at snapping orders on "how to". Got me straightened out real quick.  :)

Hope things get to working for you soon...

Hugs BD :-*

I've been trying this over the last few days... red bull....

Trouble is the dope from the Trex and Topimax plus the High from the Taurine and Caffine chugging makes me feel HORRIBLE.

Like a sorta very hyperactive zombie....  :-[

If you need an energy drink, the starbucks in the large cans have taurine.  I can chug them easier.  

If your questions arent answered yet, keep asking, you got the right people to ask about O2 already posting in this thread.

I'm getting better at the O2 - from talking to Batch, it looks like its just a matter of time/technique/conditioning.

Still no Red Bull for me. I completely do not do sugar and am a bit reluctant to take on all the stuff in the sugar free version. I recently gave up soda and artificial sweetners and just trying to get off as many unnecessary chemicals as possible. Not a health food nut or anything - just seems like the right thing for me at this time.

I've been drinking really strong iced tea after I get off the O2 and that seems to help a little.

Is it possible to just buy taurine by itself as a supplement? Guess its something I could google.

1968eric wrote on Aug 2^nd, 2009 at 8:07pm:

I've been drinking really strong iced tea after I get off the O2 and that seems to help a little. Is it possible to just buy taurine by itself as a supplement? Guess its something I could google.

Hi Eric,
Taurine Supplements are sold in the vitamin stores around me in the Amino Acid section.   ;)  You can try that!!
How is the preventative working??  Saw your topamax side effects went away  - :D you still at 100mg?  just wondering how that's working for you for the time being...
 
Val