Sorry for the novel....

After suffering for around 14 years with CH I made the leap to O2 last June.  I was about 50% through my cycle and the HA's were at their worst before I got the script for O2.  Oxygen did wonders for the short remainder of weeks that I had the HAs.  The O2 would knock them out completely in less than 5 minutes at 15Lpm.  

I went from mid July last year until April of this year with only 1 or 2 hits in all that time.  When the HAs started back the O2 was doing it's trick as usual and within no more than 10 minutes I'd be done.  

For the last 2 weeks now I have been getting hit up to 7 times a night and the O2 isn't doing what it used to.  Last night was the worst.  HA's started at about 7pm and I kept riding them until approx 2am this morning.  One after the other after the other.  I am exhausted.  Night upon night of waking up after less than 30 minutes break between is really wearing me down.  Operating on 4 hours sleep is really taking in it's toll as well.  

The last round last night lasted about an hour and even though I got on the tank right away and huffed at 15Lpm for 15 minutes it didn't do a THING!  I am getting scared that possibly oxygen isn't working anymore, as I am having to stay on the tank longer to get any effect and that the HAs just keep coming in wave after wave.  (which they really never did before).  The most I ever had during my years was 3 a night at their peak.

Currently I am going through a large tank of O2 every week and barely making it at that.  Thank God my health plan covers 100% of it!

Anyone else have this happen to them, where the O2 doesn't work like it used to?

Sorry for being so long winded.  I just needed to get a bit of this off my chest to the only people who truly understand.  

Thanks for listening.
Hoeboe :'(

Send a PM to Batch, he has a a great mind for trouble shooting the oxygen problems.

Do you have any preventative medications you take? That is a medication you take daily while on cycle, to reduce the number of hits you get. I use 1200 mg a day of lithium while on cycle. Eliminates 80-90% of my attacks. Other popular prevents are verapamil and topomax. Definitely something to talk with your doc about. Good luck!!

Guiseppi

Hey Hoeboe!  What Guiseppi said!  PM Batch.  He'll help you work this out.

Have you made any changes in your diet?  There is a facinating thread on the meds board on Atkin's type diets affect on blood PH levels and how that reduces the effectivness of O2 therapy.

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-Dennis-

What they said about contacting Batch...

I sometimes down a can of Red Bull (or other energy drink) while sucking O2 if it isn't working as well (or as fast) as I think it should. (I have NO patience).

Hope things get better soon. Vibes to ya....

Hugs BD

Hoeboe, I am going through exactly the same thing currently with respect the number of hits and being hit all night, however my intervals at night are about an hour apart.  I will say however with only a few exceptions my nightly attacks have been 5 kip or below so it has been easier for me to do what I am about to say, but one thing that is very important is try your best to stay as calm as possible.  I am not suggesting that you are not, but one's tendancy, especially when getting hit so frequently is to get frustrated plus if your kip level is high that even exacerbates the situation and you will produce moe carbon dioxide making it more difficult for the O2 to work.  The calmer you are the better change the O2 has of working. Again I am not suggesting this is the case because I have been able to remain calm and the beast is still kicking my butt, but the O2 is aborting is short time.  I even started a thread asking if O2 could cause a rebound, which I learned the answer was no.  Good luck and as everyone said PM Batch.  Wishbone.

Is clustermasx still around.  When O2 wasnt working well for me, I got one and it is has worked much better and quicker since.  I also bought my own regulator since renting one was costing me a bunch.

However, I couldnt find Ben online.

Thats all I got.  Everythign else i would have said was covered above.

Hoeboe,

Sorry to be so slow in responding...  I should have caught this last night.  

A 15 LPM O2 flow rate is not high enough to support hyperventilation or to abort high Kip-level attacks effectively if at all during high cycles.  I use a minimum of 25 LPM...  and higher.  If started at the first indication an attack is about to start, 15 LPM will work effectively under normal conditions for low Kip-level attacks measured during therapy where the max is at Kip-4 to kip-5.  Above Kip-5 during a high cycle, the wheels start coming off... a Kip-6 could take 20+ minutes, and a Kip-7 up to 30 minutes or more.  At Kip-8 you're looking at 30+ minutes to an hour if it works at all.   Above that...  All bets are off...  You can't get there from here under high cycle conditions with a 15 LPM flow rate.

I'll send you a PM with a suggested link for higher flow O2 regulators, but in the mean time, here are a few things I do when I go into a high cycle.

I suspect you may be having a mild case of acidosis (low pH) for some reason...  and this condition is kicking you into a high cycle.  This is arterial pH not your tummy.  There must be a reason why your oxygen therapy is not working when it used to work so effectively.  A low pH (too much acid) is usually the culprit in my case.

I've been charting my saliva pH for the last three months and found that when my saliva pH starts to drop below normal levels, I go into a high cycle where the attacks are more frequent and intense.  When my pH is above the normal range...  I'm nearly PF and all I use is oxygen...  no other CH meds.

When my pH drops, I do two things: I change my diet and start taking mineral supplements.  I lay off the red meat and cheese in favor of more green veggies with small portions of chicken or fish, and I chew almonds for snacks.  The following link has a chart of foods to eat and foods to avoid when pH is low:

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I also start taking mineral supplement tablets containing Calcium and Magnesium with Zinc.  You can get them at Sam's or Costco.  Most food stores carry them as well.  

I use the Nature Made brand, but the other brands will work just as well.  I take them as directed on the label (one tablet 3 times a day) until I'm out of the high cycle.  In a pinch, I chew up some Tums...  Tums are also a good inexpensive source of calcium and chewing them gets the calcium into your system faster than the horse pill tablets.

The change in diet and mineral supplements will help elevate a low pH condition back up to a range where oxygen therapy will become effective again.  It usually takes up to a full day or two for this to happen, but you might see an improvement in as little as few hours...  It all depends on how low a pH you have.

Once I've started taking the mineral supplements and changed my diet, there's one more thing I would try:

If I was limited to 15 LPM, I would take one of the old Satler Labs disposable NRB oxygen masks, remove both of the exhaust check valves (silicone disks) located on both sides of the mask, crank the flow rate up to 15 LPM on the O2 regulator, and start breathing as fast as I can.  The physiology and blood chemistry behind this gets a bit lengthy to explain. Essentially, in addition to upping the oxygen concentration to achieve an abort, we also need to get rid of excess CO2.  Ventilating the lungs at a higher respiration rate and tidal volume than normal is the fastest way to accomplish this..

I stay seated because if done right, this is hyperventilating and I get dizzy.  That's good.  

Just like Oxygen is our friend... CO2 is our enemy.  A low pH compounds a high CO2 level in the blood stream and both conditions are powerful vasodilators. As such they will combine to diminish or completely negate the effectiveness of the oxygen (a vasoconstrictor) to the point where it will no longer abort our cluster headache attacks.

This method is not as effective as hyperventilating on 100% oxygen at a flow rate of 25 LPM or higher, but it's more effective than a constrained respiration rate caused by using the NRB O2 mask at 15 LPM that allows CO2 levels to build above normal.

The above should help...  Please let me know either way.  

Ernie,  Check your PM too.

Take care,

V/R, Batch

I went through the same thing you did.  I used to get relief from O2 within 60 seconds, then it started not working so well.  I was already using a clustermasx.
Then I went from 15 to 30LPM and it started working again.  I dont have a 30LPM regulator, so I hooked 2 tanks on 2 regulators to 1 reservoir bag.  Now O2 works much better.

Like Batch says: Large, deep breaths take a hell of a lot more than 15LPM.

now this is just a thought, but, if you are getting hit while trying to sleep, maybe you should consider melatonin. 15mgs before bedtime. works well for me. completely killed  the night-time hits.   tuck

O2 works for me most of the time, but only if I catch it within a few moments. It has about 50-50 chance if they come while I'm sleeping.
I've got to learn more about the PH levels.

Try the melatonin at night before bedtime. It helps get you thru the REM sleep and keep the CH's at bay. It works for me most of the time.

And listen to Batch -- he's our resident expert on O2...  I'm doing a lot better since I started listening to him...

Hugs BD

I don't know how accurate this info is but I bet batch knows what he is talking about.  I think this is great info to help people and should get its own tab to the left.  

I've had cycles where the O2 wasn't quite as effective as it is for other cycles. Luckily this last cycle O2 was very effective.

Advice...what Batch says.

Scott

Sorry it took so long for the thank you, but.... THANK YOU!!

I was away for holidays for a couple weeks and haven't had a chance to reply.

I guess this cycle was as it was last year.  (the last 2 weeks being a complete b!tch!)  While I packed extra O2 for when we went away I only used half of my M tank which happened to be the first night we were in our cottage on the lake.  The remainder of the week only saw me with one HA every second day and quite mild at that.  

I am now on my way out of cycle for "hopefully" another year!  <prays>

I love you guys here!  I only seem to come here when I am at "my" wits end, and there are those of you that never get a break from the devil.  I feel like such a wuss at times when I think of what a lot of you go through 365.

Thanks to all of you you responded to my cries.  You are the best people I have ever chatted with on ANY board!  I will close with, that I hope I never have post again, but am happy to know that once April roles around and the beast may be back, that you are all here for some comfort.  Hopefully not, but after 14 years with the dance you become a little jaded.  :/

Thanks again everyone!  So glad you are all here.

Much LOVE! (and PF  days for all of us!!)
Jim