My neuro finally agreed to give me O2 since I quit smoking and I used it for the 1st time last night.  The results were great.  Knocked out my headache in less than 10 minutes, faster than Imitrex ever did which has always been my savior.  The problem was, my headache came back in just over over 2 hours which never happens, not even with just Goody's and a Mt Dew.  Has anyone else had that problem with O2?  Are there any suggestions for making the O2 more effective?  Thanks

If the O2 worked well the first time I would presume you are using it correctly (15 lpm or greater, real non-rebreather mask). I have had the same occur also. Sometimes the O2 worked again sometimes not so much. But it sure worked more times than not. Sometimes I did have to use triptans also.

I've only had one cluster (6wks) and high flow O2 worked for me but not every time. I can remember nights in the middle of the cycle when the hits were hardest and longest, when O2 did not help. Nor did anything else. But I've had times where O2 did not work but the triptan did.

I'd sure like to hear from others with experience about your original question and whether they have had time/periods where O2 did NOT work and what they did about it.

For me, most of the time, one of the two or both worked. There were few times I just had to ride it out.

Don't give up on the O2 and good luck.

Used it again last night.  Worked great again.  A little slower this time (still faster than Imitrex) but this time the headache didn't come back.  Kept using the O2 for about 5 mintutes after the pain subsided.  Don't know if that had anything to do with it.  Will have to keep going and see how the long term results work out.  Would love to hear others' exepriences as well.

It's been reported A LOT that staying on the O2 for 10 minutes or so after the beast is dead does help prevent a fast recurrence.

Just note however, that the beast is a tricky bastage and just when you think you have it figured out, he'll pull a fast one on you.

I've always had trouble with the "come backers" generally within 20 minutes of shutting off the 02. Tried running it for 10 minutes after the headache was gone with the same results, always another headache.

So I started taking an oral cafergot when I started the 02, 02 would beat it down, cafergot would buy me up to 12 hours pain free time. Several on the board suggested I chug an energy drink when I start up the 02, instead of the cafergot. Just started trying that this cycle and so far it's working as well as the cafergot, might be worth a shot.

Joe

For me I sit up straight and 'hyperventalate' the O2, this stops the hit the fastest. Once the pain is gone I turn down the O2 flow to 10lpm breathe normal, then to 8lpm etc., for 10 or more min. This does help the re-attacks.

With O2, Id rather stop any extra hits than go through 1 full hit. I've used O2 for my CH for 20 yrs. and and wouldn,t trade it for any other med.

Getting on the O2 immediately is key to good aborts, at the 1st sign of pain. In my case the pain ramps up quickly so seconds count.

Don

jlcalbre wrote on Jan 30^th, 2010 at 9:35pm:

My neuro finally agreed to give me O2 since I quit smoking and I used it for the 1st time last night.  The problem was, my headache came back in just over over 2 hours

This had been at times typical for me.  Great to begin to feel a hit subside with oxygen and then find it seems to be gone, back to rest, that's over.  Awaking again and again though can wear you thin, almost knowing getting pf is a temporary state creating sometimes a looming apprehension of sleeping again.

If it continues to be so, report results to your doc and inquire of his thoughts of beginning a search for a preventive med also.  They can take time to become effective if they work, but if helpful, a full night's sleep will at that time be very welcome.


Tending to agree with Scott's posting from another thread, "are preventatives necessary"

seasonalboomer wrote on Jan 27^th, 2010 at 7:55pm:

Other than a a couple of tries with Kudzu I have relied entirely on abortives. If I was suffering repeated hits every day, untriggered, when in cycle I would reconsider though.

Hey JL,

Good on you for quitting smoking in order to get your neurologist to give you an Rx for oxygen therapy.  I think it's criminal to refuse oxygen therapy to cluster headache sufferers...  but then you did quit smoking... 

It sounds like you're using your oxygen therapy properly.  Pattern changes in the frequency of cluster headache attacks are not uncommon after starting oxygen therapy.  Most new users have what we call re-attacks where another attack will occur 15 to 45 minutes after a successful abort with oxygen therapy. 

Re-attacks happen when the oxygen therapy works so well and so fast it aborts the pain of the attack, but not the triggering mechanism.  When the effects of the oxygen therapy wear off and the triggering mechanism is still present, the attack resumes...  Re-attacks tend to go away after 3 to 4 weeks if folks use oxygen therapy on every attack.

The frequency of your attacks should start dropping in a few weeks as well if you maintain the practice of using your oxygen therapy on every attack no matter how minor.  We saw this as a consistent pattern in the pilot study we ran where we collected data on over 650 aborts with oxygen therapy.

My attacks hit like clockwork every two hours from 8 pm to 6 am for the first 10 years while I was episodic, so I didn't notice any difference when I turned chronic and finally started using oxygen therapy...  All I knew at the time was I was getting fast aborts with oxygen therapy in less than 7 minutes without any of the side effects of maxing out on imitrex each night.

I found that taking half a 50mg imitrex tablet after aborting the last hit with oxygen before going to bed helped me get the needed sleep...  The half life of imitrex is 2 hours and a 25 mg dose would still be at a therapeutic level after two hours so this regimen would usually give me a minimum of 4 hours sleep...  and some times 6 hours during peak cycle time.

With the exception of an occasional snort of imitrex nasal spray during air travel, I no longer take any cluster headache preventatives or abortives.  I quit taking them when I found that oxygen therapy worked even faster when the flow rate supported hyperventilation.

I still have high and low cycles that just happen for no apparent reason.  During high cycles I average 3 to 4 attacks a day and 3 to 4 a week during low cycles. 

It appeared my high cycles were due to a drop in arterial pH so I started logging my saliva pH measurement 3 times a day and at the start of each attack as soon as I woke up. 

The following chart shows a clear drop in my saliva pH at the start of each attack shown in red below the daily average shown as the green line...  All of these attacks hit while sleeping.

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I took the second pH measurement shown in blue five minutes after the abort with oxygen therapy to give my saliva time to equalize with arterial pH.  As you can see, the oxygen therapy pushed my saliva pH back up to or above the daily average pH.

I also used a finger pulse oximeter to measure my oxygen saturation as soon as I woke up with an attack and again 5 minutes after the abort with oxygen therapy starting on Day 7.  As you can see my oxygen levels were low when waking up with an attack.  The normal range is 96% to 98%.  You can also see that five minutes after oxygen therapy, my oxygen levels were still at 99%... That's as high as my finger pulse oximeter will register.

Armed with this information, I started taking 4 to 6 calcium citrate tablets with vitamin D, magnesium, and zinc each day as a preventative...  These mineral supplements act as a buffer that elevates a low arterial pH back up to neutral.  They don't prevent my attacks completely, but they do reduce their frequency from one a week to as much as one in ten days.

I also found that drinking an 8 oz glass of fresh lemonade with lunch and two more with the evening meal helped reduce the frequency and intensity of my attacks.  I know it sounds counterintuitive as lemonade contains citric acid, but lemonade actually elevates arterial pH...

The following link explains more about the body's acid-alkaline balance.  There's also a chart near the end of this link that shows alkaline forming foods:
 
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I order my pH strips from pH ION at the following link:

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Take care and keep up the oxygen therapy.

V/R, Batch

I didn't know I should be taking O2 on every hit- does it really make that much of a difference. Only had O2 for a couple of days, but it is already my new best friend- I call her Genny.

NancyB wrote on Feb 1^st, 2010 at 10:16am:

I didn't know I should be taking O2 on every hit- does it really make that much of a difference. Only had O2 for a couple of days, but it is already my new best friend- I call her Genny.

Every time you get hit, you get on the O2. As quick as you can. You need to read everything in the oxygen info link to the left.

I'm with Brew, 02 for every hit. I keep an E-tank in my car whenever I'm out and about. On cycle it's always close by.

Joe

Guiseppi wrote on Feb 1^st, 2010 at 10:40am:

I'm with Brew, 02 for every hit. I keep an E-tank in my car whenever I'm out and about. On cycle it's always close by. Joe

I'll see your car tank and raise you an office tank.

M tank at home, D tank in the car, E tank in the office. Three tanks, three regulators, three O₂ptimasks. In cycle, out of cycle, all the time.

(Except when we need to switch vehicles and I forget. But forgetting can sometimes be a good thing as it means I haven't thought about it in awhile.)

Brew wrote on Feb 1^st, 2010 at 10:45am:

(Except when we need to switch vehicles and I forget. But forgetting can sometimes be a good thing as it means I haven't thought about it in awhile.)

Once I forget weapons while being out, as you say, it's good because my cycle is probably ending.  When the beast is taking a nap, I never forget he is there.

So do you use O2 for shadows too? I know this sounds weird- sometimes I have a hard time telling the difference, At least at first.

Yes. Use it. It's the one abortive we have that won't hurt you (unless you over-do it, which would take breathing it at 100% concentration for a day or more).

I'm gonna need a bigger tank. Da-na, da-na, da-na.

You should be able to calculate how long it's going to last.

An "E" tank holds roughly 700 liters. At 25 lpm, it will last you 28 min. At 15 lpm, it will last about 45 min.

And you say "tank" (singular). Is that all you have? You should have several and rotate them, using one while the others are being filled or while you are waiting for a delivery.

Right now I have 4 "M" tanks (one empty, one I'm working on, and two full), 7 "E" tanks (2 empty, one up, and 4 full), 5 "D" - you get the picture.

It's oxygen. It's not like it's some kind of rare compound or element. Use it.

I have 2, rather small, but mostly I was being a wise ass. You know the scene in Jaws - we're gonna need a bigger boat? Just realizing what's in store. Thanks for the help.

I didn't really quit smoking get O2, but it is certainly an extra benefit of quitting.  I have to say I probably would have done it sooner if I had known the O2 would be so effective.  In terms of speed, nothing seems to compare and I have tried everything.  Hopefully the re-attacks will subside over time.

On the comment on preventatives, I have always been on them for last 13 years and every time I have ever tried to go off them, my headaches have come back immediately.  For me they are a must.  I may have an occasional CH cycle while I am on them, but without them, CH's seem to be a gaurantee.  I know everyone is different though so if you can get by off cycle without them more power to you!