I first came to this site on Saturday 8 days into my forst CH and the day after being diagnosed. I managed thru the weekend logging my hits and learning the patterns. Couldn't get any o2 over the weekend so used Redbulls which I think helped some and this site to help me understand what I was dealing with. My plan was to get o2 no matter what. Got in to see my primary care at 11:00 am Monday after logging hits to 8k at 4:30 am and 7:30 pm 4 days in a row. hits of about 3 in between and a few PF hours in between. On Monday my doc (Johns Hopkins Med Center) didn't know about o2 but actually looked at the o2 section on this site with me from her office. Wanted a CT scan before prescribing (good advice) so she had me transported to the ER for ct which was neagitive. They admitted me when o2 in the Er didn't work, and my doc and the ER doc talked all day until I got a 8k hit at 7:30. Then they gave me nasal Imitrex to see if it would help, then o2 immediately when it didn't. o2 at 15 lpm worked in 20 minutes and I was pf and slept like a baby at the hospital. Woke up at 4:00 sm to prepare for the next hit and it never came. For a couple hours I thought maye this past 10 days n=had just been a bad dream. Then the shadows and congestion in right nostril started at noon on my way home. Red Bull held it off until my o2 arrived at 4:00. I waited for rthe 7:30 big hit and when it started hit the o2 at 15 lpm. It worked in 20 minutes again. Slrpt prettey good from 10:30 'til 3:00 am then got hit at 4:15 with a 7k. o2 at 15 lpm brought it down to a 1 or 2 which has been lingering all day. Went and traded my o2 for 2 new bottles and am trying to wait for about 7:00 to useit again.

Sorry this is so long but guess I'm sharing and also wondering how much pain I should tolerate before using the o2. Should I use it even for 3ks or try to tolerate and wait for the big ones? The o2 doesn't break the cycle right, it just helps with each episode, right?

Looking for some experience and feedback. Jay 56 male newbie in Baltimore.

You're right. It only aborts each episode.

What you didn't say is whether or not you were using a non-rebreather mask. That part is CRITICAL. It's the one with the bag and no holes to mix the O2 with room air. You want 100% O2 in your lungs and nothing else.

Pretty much like that Jay, I use my O2 at 15lpm aswell  sometimes 30lpm, but I didnt find way to abort faster than 10 minutes yet, I do have O2ptimask which is non-rebreather, my usual time of abort is 10-15minutes or if it doesnt work I stand up from O2 endure pain a bit jumping and swearing in my own language  ;) then I get on O2 and it usuall does work if it doesnt then I just sit on it with very low lpm and at least endure lowered pain instead the very high one since O2 lowers it by half.

I guess you shouldn't endure any pain but if you meant saving O2 since its expensive or your insurance wont cover more than certain number per month then not sure, I would just kill pain every time it goes from shadows to big one, even try it for shadows, it does work for some, unfortunetly I shadow all day long and as soon as I get off O2 I shadw again, I guess I am weird or I just have some other headache in background apart CH or maybe not.

I would say hop on the O2 right at the onset of any attack, and see if the Red Bull can knock down any lingering shadows.

Very glad that at least you're getting some relief with O2 now!

You'd be well advised to have a backup plan or 2 in place in case the O2 doesn't work for a particular attack, or generally stops working. Some ideas for back ups:

A higher flow regulator (and chugging a Red Bull along with the O2)

Imitrex injections (1/3 to 1/2 dose a la the imitrex tip to the left of this page). These work if the O2 fails!

The clusterbusters approach. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

those lingering 1-3k are likely what this CH board calls 'shadows' - which I find a very apt description...
Sometimes O2 works for the shadows, but as mattyAA mentions, I find that as soon as I stop the o2, the shadow returns ('the shadow returns - oooh, sounds like a bad movie title)

as for when to use your o2, as soon as you feel yourself starting to move up the scale from a 2k where you've been lingering for a while to a 3 then 4 then higher - grab that o2.  If you feel yourself getting congested on your ch side or your eye beginning to water, again, grab that o2.
hit it early, hit it high flow.

Just a side note for you who are new to the board: when referring to the pain scale we call the "Kip" scale, we generally write "Kip 3" or "Kip 7" or just abbreviate to K3 or K7 - not "3k" or "7k."

It was named after Bob Kipple, who came up with the scale, designed especially for clusterheads. God rest his soul.

It's just a respect thing. I'm sure you understand.

Well said Bill, and I bless Bob Kipple every day. 

Jerry

Thank you for the correction - I'm sure that neither Jay nor I meant any disrespect whatsoever...

Lettucehead wrote on Jun 24^th, 2010 at 12:46am:

Thank you for the correction - I'm sure that neither Jay nor I meant any disrespect whatsoever...

We all know you didn't.

I always hit the o2 as soon as I feel it move above a shadow.  Kip 3 or kip 4 I hit the o2.  The sooner the better.  I am so glad to hear that your dr was willing to come to this site and take our word on the oxygen.  That saved you so much unneccesarry pain!  I also can not believe the dr sat with you till your next hit to witness it and make sure the o2 worked.  What a blessing.  Those drs are rare.  Make sure you recomend them on the OUCH.org page for recomended drs and neuros.  You need to find a back up for when the o2 fails.  Because there will be a day and time when it will fail you on occassion.  Many use imitrex nasal spray or injection because it will abort in 6-10 min.  I found zomig nasal spray to be just as effective.  You need to have a back up plan in case the imitrex fails.  Some drs tell you to go to the er for a narcotic shot, some want you to get DHE injection or IV if you have gone without the imitrex for 24 hours.  So talk to your dr about what to do in case these fail.  I am sure you are not going to want to wait until the day arrives to try to get ahold of your dr to discuss this.

Thanks to all. First, thanks to the Kip scale as I read about it the first day. A great man. Second, now I know I have the wrong mask. Didn't even notice the difference but no bag on the one they delivered and there was a bag on the one I had at the hospital. I guess I'm not getting 100% o2. I did cover the holes with tape as there were no disks. Inhale thru my nose while pressing the mask to my face and then lift the mask just a little to exhale thru my mouth. Will track down the proper mask today and order one from the CH store too as a back up. Was able to get two tanks yesterday when my first ran out and hope to have another delivered tomorrow to have two for the weekend. Then may start working on getting a larger one next week. Going to try to go to work today for the first time in a week. I'm never over a Kip 3 betweek 10:00 am and 7:30 pm. The 7:30 pm one is the worst at a Kip 7. Been using Red Bull for the Shadows and its great so far. Does the diet Red Bull work too? Thanks to all....Don't know where my "head" would be without this message board!

jayhedges wrote on Jun 24^th, 2010 at 8:05am:

Will track down the proper mask today and order one from the CH store too as a back up.

Just a hint: The one you get from the ch.com store (the O₂ptimask) will be your primary, and the one you get from the oxygen supply house will become your backup. The O₂ptimask is far superior.

Hey Jay,

That's a heck of a way to get an Rx for oxygen therapy, but at this point, there's no sense in arguing with success.  Good on you!

It also appears you've mastered the art of oxygen therapy at a flow rate of 15 liters/minute.  Again...  Well done!

What you might want to think about now is looking for a good 0 to 25 liter/minute oxygen regulator or better yet, a 0 to 60 liter/minute oxygen regulator. 

I realize these might sound like high flow rates… and compared to 7 to 9 liters/minute or even 15 liters/minute...  they are…  but for good reasons and they're very safe...  More so I might add, than other cluster headache medications as oxygen inhalation therapy has virtually no lasting side effects.

For starters, oxygen flow rates of 25 liters/minute and above support hyperventilation.  Flow rates this high will bring the time to abort your cluster headaches down from 20 minutes to an average of 7 minutes.   We've data on over 600 aborts with oxygen therapy, 366 of these aborts were made at flow rates that support hyperventilation that confirm these figures.

More about the good reasons...  It turns out that when arterial carbon dioxide (CO2) builds above normal levels, it acts as a very powerful vasodilator that can actually overpower the beneficial effects of oxygen therapy as a vasoconstrictor in aborting your cluster headache attacks.  This makes an abort when using lower oxygen flow rates difficult and lengthy if not impossible.

When we hyperventilate with 100% oxygen, we cast off CO2 in exhaled breath faster than our bodies can generate it through normal metabolism and physical activity.  This will push our respiratory and circulatory systems into a temporary condition called respiratory alkalosis (arterial pH more alkaline than acid).  You'll know you've reached this condition when you start feeling the symptoms of paresthesia. 

These symptoms include a slight tingling or prickling sensation of the fingertips, lips, or back of the neck.  We may also experience a slight feeling of dizziness.  Again, as strange as this may sound, any of these symptoms of paresthesia are a good sign we're hyperventilating effectively and this will help bring about an abort of our cluster headache as fast as possible.

The symptoms of paresthesia also indicate we've cast off enough CO2 to reduce the acid content of the blood stream and elevate its pH.  And, as an elevated pH causes blood hemoglobin to have a greater affinity for oxygen, blood cells super oxygenate delivering more oxygen to the brain to further increase the vasoconstriction needed for fast aborts.

A flow rate of 40 to 50 liters/minute of lung ventilation is really quite common.  Stated differently, the volume of air or oxygen inhaled into the lungs in one minute (the Minute-Volume) is a lot higher than most folks think even with only a moderate level of physical activity. 

For example, if we were to climb a couple flights of stairs at a fast pace, walk or dance rapidly, or lift heavy weights, we would build up enough CO2 and lactic acid in the blood stream to stimulate a lung ventilation of over 50 Minute Liters just to cast off the excess CO2 generated as a result of the physical activity.

I have over 3000 hours flight time in Navy fighters and all of that flight time was spent breathing 100% oxygen from takeoff to tough down with the average mission lasting over two hours.   I can tell you that when I was flying aerial combat and air-to-air training missions, the physical exertion encountered during high G-force maneuvers had me sucking down oxygen at flow rates well above 45 liters/minute.

Putting this in perspective, during high Kip-level hits, most of us are unable to remain motionless so we do the little dance, munch on the carpet, rock back and forth, or bang on our heads.  Even this level of physical activity can easily generate enough CO2 to stimulate lung ventilation with room air on the order of 25 to 30 Minute Liters.

This is where an oxygen flow rate of 15 liters with a non-rebreathing mask may not sufficient to abort a cluster headache and can put us between a rock and a hard place.  The body is calling for increased lung ventilation at a flow rate of 25 to 30 liters/minute (a minute volume of 25 to 30 Minute Liters), but the regulator and mask will only deliver 15 liters/minute... 

When that happens, the body cannot cast off CO2 fast enough so the level arterial CO2 rises even farther above normal with a net result of increased vasodilation, and no abort...

Sooo... you see... there are some very good reasons for being able to administer oxygen therapy at flow rates of 25 liters/minute and above.

Hope this helps.

Take care,

V/R, Batch