OXYGEN NO LONGER WORKING?

[DanP]

Hey everyone,

I am in the 3rd week of a cycle- haven't had one for almost 2 1/2 years. First week I was traveling so just had to power through- the first weeks headaches tend to be fairly mild for me, then start to ramp up in intensity. Second week I was aborting with imitrex injections . They really worked well but I only did them once a day. Just got O2 yesterday and had two  attacks last night and one this morning- the normal routine for me once the cluster really kicks in- and the oxygen doesn't seem to be working. In the past, if I got on the O2 soon enough it would knock them out within 10-20 minutes but last night, nothing. Ive been dealing with clusters for 30 years now and using O2 successfully for about 20 so I know how to do it, it just didn't seem to have any effect.

Curious if anyone thinks this might have something to do with using Imitrex injections first and that for some reason is making the O2 less effective? 

thanks!

[Shaun brearley]

Triptans are a nightmare my friend, O2 works so well for many of use, what's your routine with O2? 

[BoscoPiko]

 I haven't read anything about triptan use reducing the effectiveness of O2. Are you using the same provider? My first thought tends to want to lean toward a bunk tank or possible wear and tear of your existing set up? I'm sure you know the basics of O2 usage (suggested LPM's/mask type & breathing techniques etc.) but maybe it's time to change up your intake method?  I've had many discouraging and maddening experiences with O2. Some that included me being convinced it just didn't work anymore and some where I was sure it caused the attack to ramp up. In the end I discovered a few things, some of which you mentioned (the sooner the better), the breathing technique that worked last time is not guaranteed to work this time and a quick gulp of something caffeinated prior goes a long way. 

[DanP]

thanks for the replys! Hopefully last night was an anomaly and it will work as it normally does tonight.  Shaun- why do you say that triptans are a nightmare? I've heard that before, but they do work- at least for me- are the side effects really bad? I haven't noticed anything but have always been careful to not use more than once a day.

[BoscoPiko]

28 minutes ago, DanP said:

thanks for the replys! Hopefully last night was an anomaly and it will work as it normally does tonight.  Shaun- why do you say that triptans are a nightmare? I've heard that before, but they do work- at least for me- are the side effects really bad? I haven't noticed anything but have always been careful to not use more than once a day.

As much as I want to reply to this I'm going to wait for @Shaun brearley because he explains it quite well.

[Shaun brearley]

3 hours ago, DanP said:

thanks for the replys! Hopefully last night was an anomaly and it will work as it normally does tonight.  Shaun- why do you say that triptans are a nightmare? I've heard that before, but they do work- at least for me- are the side effects really bad? I haven't noticed anything but have always been careful to not use more than once a day.

@DanPit's great that your only using once a day. but temptation is always there to use more as the relief from the pain is so fast, triptans can cause really bad rebound attacks that can be alot worse than your initial attacks, plus triptans can prolong your cycle, you only need 2mg to abort with triptans so consider splitting your injection (easily done) I've been down the dark rabbit hole with triptans, I got to a state where I was using up to 5 injections a day, prolonged my cycle by around 3months with headbanging attack day and night, my body became so weak and after each injection I'd feel like I was going to have a heart attack, so please be really careful with them, don't get me wrong I still carry them with me if I out in public or go on holiday because it's not great to get an attack in public, but I never use them at home anymore I'd rather ride the pain if my O2 doesn't work but I'm lucky at present as O2 works for me, I do change my breathing techniques know and again, have you ever tried busting? And get on D3 ragime it really help alot of use 

[Shaun brearley]

3 hours ago, BoscoPiko said:

As much as I want to reply to this I'm going to wait for @Shaun brearley because he explains it quite well.

Was that quite well enough @BoscoPikosorry took time to replay on holiday in Bulgaria hope you well and pain free at present

[DanP]

thanks for all the info Shaun! I am on the D3 regimen now and did it the last couple of times I was in a cycle- seemed to help. Haven't tried busting yet but would like to- I'll look into it some more. Have a good holiday!

[BoscoPiko]

9 hours ago, Shaun brearley said:

Was that quite well enough @BoscoPikosorry took time to replay on holiday in Bulgaria hope you well and pain free at present

Yep yep, nice and informative Cant complain pain wise. Hope all is well with you 2!

[CHfather]

@DanP, it is commonly found that O2 is less effective when tanks have less oxygen in them.  This can happen when the tanks are as much as half full, and it seems to be very common at 1/3 full or less.  If you can vary the flow rate of your regulator, people say that increasing it as the tank becomes less full is one way to cope with this situation, before resorting to a new tank.  I hope this is the issue for you, since it's pretty easily fixable.

[DanP]

just to follow up- oxygen worked much better last night- stopped the first hit in about 10 minutes and the second hit in about 20. The third hit took more like 35 minutes but if nothing else, even if the last one took a bit longer to work the pain never got too bad. 

 

[Shaun brearley]

2 hours ago, CHfather said:

@DanP, it is commonly found that O2 is less effective when tanks have less oxygen in them.  This can happen when the tanks are as much as half full, and it seems to be very common at 1/3 full or less.  If you can vary the flow rate of your regulator, people say that increasing it as the tank becomes less full is one way to cope with this situation, before resorting to a new tank.  I hope this is the issue for you, since it's pretty easily fixable.

Sorry @CHfatherforgot about tanks below a third being less affective 

[Shaun brearley]

3 hours ago, BoscoPiko said:

Yep yep, nice and informative Cant complain pain wise. Hope all is well with you 2!

Yes been pain free since January so can't complain just got flight home to get through but should be ok 

[CHfather]

48 minutes ago, DanP said:

stopped the first hit in about 10 minutes

Dan, is this a standard aborting time for you, or is it sometimes faster?  I'm going to paste some info here that might help you speed it up a bit.

>>>You should have oxygen from a tank/cylinder/cannister, not a concentrator that makes O2 from room air. You should have either a non-rebreather mask or the mask that is made for people with CH, the “Cluster O2 Kit,” which you can buy here: http://www.clusterheadaches.com/ccp8/.

The flow rate should be sufficient that the reservoir bag on your mask is always full when you are ready to inhale using a forceful breathing strategy. For some people, this is 15 liters per minute (lpm); for others it can be higher. Since medical O2 suppliers generally won’t provide a regulator that goes higher than 15 lpm, you might have to get your own regulator. More about regulators below.

You want to have at least two tanks: one large one for home and one smaller one that you can take in the car, to the office, etc.

Batch has recommended what he refers to as a “redneck” approach, in which hyperventilating with room air is alternated with using pure O2. Read more about that here: https://clusterbusters.org/forums/topic/4919-batchs-hyperventilation-red-neck-bag/

If you get a standard non-rebreather mask, there will probably be at least one little circle of small holes in it with no gasket behind it. Tape over that circle or cover it with your thumb when you inhale.  Be sure you are pressing the mask firmly to your face; don't use the strap to hold it on (cut the strap).  Be sure you are getting a good seal, particularly if you have facial hair.  You want to be inhaling pure O2 from your mask, with no room air getting in. Cutting the strap will allow the mask to fall off if you fall asleep, so you don’t continue breathing O2.

Stay on the O2 for 5-10 minutes after you have aborted the attack. For many people, this holds off future attacks.

Many people find that drinking caffeine or some kind of energy beverage as they start on the O2 significantly improves their abort time. More on caffeine/energy beverages below.

People find different ways of breathing that work best for them. I have mentioned Batch’s suggested hyperventilation strategy as one example. In general, you should be inhaling deeply as you begin, holding the air in your lungs for a second or two, and then deeply exhaling, to the extent of doing or nearly doing a "crunch" to force out as much air from your lungs as possible. Looking down toward your feet as you use the O2 has been shown to help with aborts.

Regulators. The oxygen should be flowing into the reservoir bag on your mask at such a rate that you do not have to pause before your next inhale. 15 lpm doesn’t do that for everyone, so they buy different regulators. NOTE that medical O2 tanks take different types of regulators. The smaller tanks use CGA 870 regulators and the larger tanks use CGA 540 regulators (all welding O2 tanks, of any size, take CGA 540 regulators). You can buy higher-flow medical regulators of both types online at amazon, EBay, and elsewhere.

Many people use welding regulators (which, as I have said, will only fit on larger medical tanks). These allow very high flows, and can be adjusted for the optimal flow rate for you. You also can find these at many places, including amazon and EBay. You can get them at welding supply stores, too, but they are likely to be much more expensive. You should be able to find a very acceptable one for about $40 or less. If you buy one, try to be sure that it comes with a barbed valve that will hold your mask tubing. You can also buy a very inexpensive barbed adapter at many hardware stores or online. (Some people have gotten mask tubing onto the non-barbed fitting that is standard for the welding reg -- I'm just not very "handy" in that way.) Also, be aware that unlike a medical regulator, a welding regulator has no lpm settings or gauge. So you have to fiddle with it a little to get the flow rate you want. This becomes very easy very quickly.

One other thing you'll need if you buy a CGA 540 regulator: a large adjustable wrench to tighten the regulator onto the tank.

A demand valve system supplies oxygen only when you inhale (or sometimes when you press a button to release the O2). People who have these swear by them: as much O2 as you need whenever you need it. They can sometimes be found on EBay. There are other sources for them, but I’m not sure what they are. Maybe someone will add that information.