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Oxygen not effective and cycle changing?


Seattle cluster
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Hello.  Like many people I only come back when the beast comes back and try to forget all about them   quick update after having 3-4 weeks in winter every year that basically came the same time every night, I took vit L and have now only had 2 cycles in 4 1/2 years.  This one was bad because I felt like my oxygen was not working and wondering if someone can tell me if it is possible to get bad oxygen?   I live somewhere new and dealing with a new company and have a mask with a bag on it which I did not have before.  I read that this is what you should have but seems strange that now I have "correct" mask it is not effective.  Prior setup was just a mask with line straight to tank.   I felt these coming long before usual and besides some at night in the beginning they were all coming in the day time.  And not just one like before. Sometimes up to 3 and the oxygen would not even make them bearable after 12-15 min which is new to me.  I also had a headache that would sometimes last for many hours even after the worst was done.  My schedule used to be very specific and so much has changed I wanted to reach out for any advice and to see if anyone has experienced anything similar. Thank you

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.....are there any holes in the mask? tape 'em/plug 'em....you  want pure O2 with no room air mix...

....make sure flow is high enough for bag to refill for next breath....you don't want to be waiting...

...some find breathing directly from tube better...just be sure no nose breathing while using mouth tube...

....downing an energy shot (2 oz/5-hr energy type quick, easy, no sugar) on the way to tank enhanced effectiveness immensely for me....

...absolutely critical to start O2 immediately upon perception of hit...stay on after for as long as it took to abort...if i waited or could not get to tank quick enough there was a point where no amount of O2 would work. since it is best to avoid triptans as only a last resort abort, learning your hit "tells" is vital. is not always obvious to the clusterhead as many report that others around them can see a hit coming before they do....weird but true. 

....hyperventilation (some start even before getting to O2 tank) is reported best method....others (me) find slow DEEP breaths just as effective with added benefit of calming effect....another is breathe and hold. try various methods to see which works best....a combination worked best for me (slow/deep/hold..repeat), sometimes within same hits..

...no, reliable sources of medical/welding O2 will not give you "bad oxygen"....note that scuba tanks are compressed air, not O2 on the off chance this is what you're using...

...schedule changes are poison to clusterheads....a sadly limiting factor for many....i had to maintain very specific routines...especially sleep and eating (low blood sugar a trigger)...

 

 

 

Edited by jon019
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Some O2 thoughts.  (1) Your mask probably has a set of small open holes on one side.  Block those so that no room air gets in when you inhale.  (2) Some people find that when a tank is relatively low in O2 (maybe 1/3 full or thereabouts) O2 is less effective.  (3) If the bag is not full when you are ready to take your next deep inhale, your flow rate is too low. 

As far as changes in frequency/timing/severity of attacks, many people do experience that. 

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7 hours ago, jon019 said:

.....are there any holes in the mask? tape 'em/plug 'em....you  want pure O2 with no room air mix...

....make sure flow is high enough for bag to refill for next breath....you don't want to be waiting...

...some find breathing directly from tube better...just be sure no nose breathing...

....downing an energy shot (2 oz/5-hr energy type quick, easy, no sugar) on the way to tank enhanced effectiveness immensely for me....

...absolutely critical to start O2 immediately upon perception of hit...stay on after for as long as it took to abort...if i waited or could not get to tank quick enough there was a point where no amount of O2 would work. since it is best to avoid triptans as only a last resort abort, learning your hit "tells" is vital. is not always obvious to the clusterhead as many report that others around them can see a hit coming before they do....weird but true. 

....hyperventilation (some start even before getting to O2 tank) is reported best method....others (me) find slow DEEP breaths just as effective with added benefit of calming effect....another is breathe and hold. try various methods to see which works best....a combination worked best for me (slow/deep/hold..repeat), sometimes within same hits..

...no, reliable sources of medical/welding O2 will not give you "bad oxygen"....note that scuba tanks are compressed air, not O2 on the off chance this is what you're using...

...schedule changes are poison to clusterheads....a sadly limiting factor for many....i had to maintain very specific routines...especially sleep and eating (low blood sugar a trigger)...

 

 

 

Thanks for the reply.   I did not know about the no nose breathing as I believe that is how I used to do it with other masks atleast on inhale.   I feel like my breathing is similar to when I use to have bad anxiety and was trying to abort panic attacks.  This time around the 5 hour energy was actually making things worse.   The past two times I took them it actually made headaches last longer and gave me some sort of secondary headache that went on all day.  In the past they worked well so not sure what changed.  Honestly these day headaches are much worse not in severity but lenght wise.   Before i just had to wake up at night hook up 02 and either go back to sleep or maybe stand in shower 30 minutes after and then to sleep.  The pain of those in unconparable when they peaked but I would have gladly took those over this last bout

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7 hours ago, CHfather said:

Some O2 thoughts.  (1) Your mask probably has a set of small open holes on one side.  Block those so that no room air gets in when you inhale.  (2) Some people find that when a tank is relatively low in O2 (maybe 1/3 full or thereabouts) O2 is less effective.  (3) If the bag is not full when you are ready to take your next deep inhale, your flow rate is too low. 

As far as changes in frequency/timing/severity of attacks, many people do experience that. 

Thanks for the reply. These masks actually do have holes in the side.  As I was unfarmiliar with these I did not even realize it.  I do think I will go back to the original masks that I was using that was just the mask and line.  I have in the past experienced a decrease in effectiveness when my tank got low which is funny because if you tell anyone off of this forum they will say no that is not possible.  Haha.  

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23 hours ago, Seattle cluster said:

I did not know about the no nose breathing as I believe that is how I used to do it with other masks atleast on inhale. 

...nose breathing ok INSIDE a mask....the caution if mouth breathing with tube....dilutes the O2.

....the breathing you describe for anxiety was similar to what i did to calm the frantic panic of a bad hit....which only made it worse. when adopted  (part by accident...part by "there has got to be a better way!")...the effectiveness of O2 then dramatically improved....

...my experience with low tank volume was the necessity to monitor the resulting decreasing flow volume...actually was a nice distraction to focus on and crank up....that or pounding my head with whatever hard object was in reach, at least til i figured shit out....

...never tried but some report better success with a demand valve (can be expensive)...provides plenty O2 while, at least theoretically, saving O2

...plenty of incredibly sadly funny "info" on some FB forums....at least here it's easier check out our (my) biases/history...

 

Edited by jon019
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....ummm.....same here ^^^^^^^^^

....the advantage of a bag is a reservoir of O2...no waiting. i suppose if flow is high enough that wouldn't matter, but potential waste of precious gas thru blow by..

...many  use the Cadillac of non rebreathers from sister site clusterheadaches.com...this their store...cheap at any price, but $30 a screaming deal (and i aint got no financial connection B))

ClusterO2 Kit - Clusterheadaches.com - Online Store

Edited by jon019
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On 1/19/2023 at 9:38 PM, jon019 said:

....ummm.....same here ^^^^^^^^^

....the advantage of a bag is a reservoir of O2...no waiting. i suppose if flow is high enough that wouldn't matter, but potential waste of precious gas thru blow by..

...many  use the Cadillac of non rebreathers from sister site clusterheadaches.com...this their store...cheap at any price, but $30 a screaming deal (and i aint got no financial connection B))

ClusterO2 Kit - Clusterheadaches.com - Online Store

Just purchased the mask thanks for the info.  My plan is to have my old mask setup and this new one next time my headaches come and see what is effective.   Not sure I understand why the bag would prevent o2 loss compared to my old mask which I believe had no holes so I was essentially just breathing straight 02.   The more I have read the more I question my ild setup and I guess since this cycle was so different it would make sense that 02 was less effective.  Life got crazy and I was not taking my vit D,traveling all over the country taking care of my dad's estate but I believe the main thing that hurt me is that I didn't have a connection for M and I need to be taking that regularly for numerous reasons.   

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1 hour ago, Seattle cluster said:

Not sure I understand why the bag would prevent o2 loss compared to my old mask which I believe had no holes so I was essentially just breathing straight 02

 

2 hours ago, Seattle cluster said:

my old mask which I believe had no holes

I think if we are understanding your old setup correctly, you have what is called a "simple face mask" -- O2 was continuously flowing into the mask (not being held in a reservoir bag as the new NRB mask does).  If that's right, then once you had inhaled with the old setup, O2 was still flowing, but not doing you any good because you were either holding o2 in your lungs or in the process of exhaling.  With the bag, the only time you are actually using O2 is when you are inhaling.

But I am confused, because a simple mask has holes in it (like the ones on your NRB, but on both sides) because that's where the exhale goes out.    Could it be that you had a demand valve system, in which the only time O2 flows is when you "demand" it -- when you start inhaling (or perhaps press a button)?  That would explain a lot (no bag; high effectiveness).

If it is a simple mask in your old system, you aren't getting nearly as much pure O2 with that as you would with an NRB, because of the holes in the sides and also because you are rebreathing some of the CO2 that you have exhaled.

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  • 2 weeks later...
2 hours ago, chh said:

I found that on my extreme attacks O2 does not work , it make the pain happen faster

how are you using o2?  what is your system (do you have tanks, do you have a regulator that goes up to at least 25 lpm, do you have a nonrebreather mask (a mask with a bag attached to it)?  do you take some kind of caffeine when you start?

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9 hours ago, chh said:

cyclinder + mask + regulator up to 250 o2 pressure or 3500 lb/in2 + water cup

No nonrebreather mask and no caffeine

what I am missing ?

image.jpeg.1c39c7ada9fac58960b120e8134bee59.jpeg

@Racer1_NC  Help, please!

9 hours ago, chh said:

No nonrebreather mask and no caffeine

what I am missing ?

I asked Racer for help because I don't recognize this system.  Most people find that some form of caffeine ingested just as you are starting the O2 will significantly speed up the abort.  Often, that's in the form of an "energy shot," such as 5-Hour Energy, but for some it can be just a strong cup of coffee, and some favor other energy beverages, such as V-8 Energy.  I can't tell from this what your mask is, but a nonrebreather is the best way to get O2 for CH (or a demand valve, or the mask that is made for people with CH (the ClusterO2 Kit), but those all work on the same principle, that you get pure O2 when you're ready to inhale).  

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[Note: I was writing this as Bejeeber posted his reply.]

Many people use Red Bull.  The differences between Red Bull and the smaller energy shots like 5-Hour Energy are (1) It's harder to quickly drink down an 8 ounce Red Bull than a 2-ounce 5-Hour Energy, and (2) even though it is smaller, the 5-Hour Energy actually has twice as much caffeine as the Red Bull.  But as I say, many people do fine with the Red Bull.  Many people like whatever drink they use to be very cold.  As I mentioned, you could also try brewing some strong coffee and keeping it on hand for when an attack comes.

A concentrator is not a good idea.  It does not make pure oxygen like what you get from a tank, and usually the flow rate is very low.

In the previous posts in this thread, there is discussion about the kind of mask you have.  It is kind of shocking to me that you can't get a non-rebreather mask.  It is important when using oxygen that you get as much "old air" out of your lungs as possible, by deeply exhaling, and then fill your lungs with oxygen by deeply inhaling.  In a system with a bag, the oxygen is held in the bag until the next time you inhale. With the mask you have, the O2 keeps flowing.  That just wastes a lot of oxygen, and I think it might encourage a kind of "normal" breathing instead of the deep inhales and exhales you need to stop an attack.  Maybe you could make your own bag, as described here: https://clusterbusters.org/forums/topic/4919-batchs-hyperventilation-red-neck-bag/.  It's not the same as a nonrebreather mask, but it would serve the same purpose for you.  (Some people think it's not a good idea to keep a bag full of O2 sitting around in your home.) 

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a red bull has about the same caffeine as an 8-ounce cup of coffee.  some people think that other ingredients in red bull make it more effective than coffee alone.  it could be that if you get the oxygen working properly you can get a satisfactory end to an attack without caffeine.

if you use the bag method that i linked you to, flow rate is not an issue.  but 95% O2 is generally not as good as 100% from a tank. 

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1 hour ago, CHfather said:

The differences between Red Bull and the smaller energy shots like 5-Hour Energy are (1) It's harder to quickly drink down an 8 ounce Red Bull than a 2-ounce 5-Hour Energy, and (2) even though it is smaller, the 5-Hour Energy actually has twice as much caffeine as the Red Bull.

I too find these to be differences worth noting - enough that next time you go to stock up on energy drinks, you may wish to consider energy shots instead - I eventually ended up switching to the shots for the conveniency, efficiency etc. after many successes with Red Bull (probably 16 oz size cans) as my O2 helper.

48 minutes ago, chh said:

I am very sensitive to caffeine one cup can make me nervious and unable to sleep for 3 days

Wow, that is sensitive! :blink: Weirdly and inexplicably, CHers can typically go right back to sleep after aborting a wake up attack with O2/caffeine.

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The regulators I've seen like that haven't been high flow. I could be wrong, I certainly have not seen everything. 

CCH....what country do you reside in?

Yes, tanks can be heavy. There are different sizes available in the US. Perhaps an inquiry to your supplier could give you a better idea of what they carry. The chart below will help you with the different sizes. 

image.jpeg.61cf53476b0186d195b736b9c09c28cf.jpeg

 

As CH father has stated, better masks are available and provided a link. I urge you to check them out. I'm sure shipping out of the US can be arranged.  Better regulators are also available from various sources. A Amazon example that would fit your tank.

The concentrator you mentioned wouldn't be a good fit for you trying to abort a CH. Not enough flow rate and not pure O2.

Bill

Edited by Racer1_NC
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....the only thing i can add here is how CRITICAL  it is to start oxygen at the FIRST sign of a hit. for me there was a very small window.... and if i missed it NO amount of O2 was gonna work. if you've ever had a cat that would suddenly and seemingly for no reason go tearing out of a room...that was me. it amused my colleagues....

...there are various breathing techniques and different ones work for different folks. most successful reported to be hyperventilation...can/should be started on way to tank. slow,deep breathing  in/out worked best for me, added benefit of being calming, breathe and hold another. try them all, try a combo...all the motivation i needed to find the "right" one was provided by CH itself........

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did you prescribe this liometacen to yourself, or did your doctor prescribe it?  it is basically a drug we know of here, called indomethacin.  it is very unlikely to help with your CH, and it is probably causing pain in your gut, too.  could tell you a long story about how we know this, but take my word for it.  i have no idea what the story is in egypt, but of course there are many countries where you can get drugs without a prescription that can only be obtained with a prescription in some other countries.  i am not prescribing anything here, only telling you what we know about what works and what doesn't.  the medicine that will stop CH attacks is injectable sumatriptan (called Imitrex in the US and Imigran in some other countries), or sometimes a nasal spray of zolmitriptan (Zomig).  you have to be careful with these, but they will stop attacks.  "painkillers" won't stop attacks, no matter how strong they are.  Imitrex and Zomig are standard prescriptions for CH.  if a doctor is prescribing for you, he or she should know that.  the pill form of sumatriptan, or zolmitriptan, or any triptan, is not very helpful, because it takes too long to work, but it might help you, particularly if your attacks occur at regular times so you can take a pill in advance.

the standard medicine to prevent CH attacks is verapamil.  most people here strongly prefer the vitamin d3 regimen, but you don't seem sold on that.  verapamil should be prescribed by a doctor and used at first under a doctor's supervision to be sure it doesn't damage your heart. many people get some relief from taking a steroid, such as prednisone. it is taken in a "taper," with a high dose at first and then lower doses over a period of roughly a couple of weeks.  again, a doctor should know about this, and it doesn't usually end a CH cycle, but gives a few days of relief. 

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I'm sorry . . . I don't have anything more to suggest.  If the liometacen/indomethacin is actually working, then it's possible (I imagine) that you might have a condition that has symptoms like cluster headache but is not the same, called a hemicrania.  There are several types of that condition, most commonly hemicrania continua and paroxysmal hemicrania, and they can be either episodic or chronic.  https://my.clevelandclinic.org/health/diseases/21538-hemicrania-continua#:~:text=Hemicrania continua and paroxysmal hemicrania both affect one side of,hemicrania causes repeated%2C sudden headaches.  People with hemicranias generally do not get results from triptans, as it seems you don't, and they also generally do not get results from oxygen, which seems like it might also be true for you.  They do get results from indomethacin, but it is administered in the form of a pill every day (multiple times a day) as a way to prevent attacks, and not, as you are using it, as an injection to stop an attack.  Maybe you have also tried this.  Usually the daily pills are taken with something to protect the stomach lining and digestive system. (I see you were here some years ago asking about busting. If that also didn't work for you, it would be a further indicator that you might have a hemicrania, since generally busting has little effect on hemicranias.)  We can hope that when your O2 system is sorted out, you will start getting results from that and things will be much better.  But, if you haven't done it already, I would look into the possibility of a hemicrania treated with indomethacin.  Like I say, I'm very sorry for what you are experiencing, and very sorry that I haven't been able to be more helpful to you.

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5 minutes ago, chh said:

About the O2 mask with a bag when I use it and inhale I also inhale CO2 right ? is it better without a bag ?

With a non-rebreather mask, you are only inhaling pure O2.  That's what's in the bag, pure O2.  If it was a rebreather mask, you'd be getting some CO2.  They both have bags, but the design of the rebreather allows some of your exhaled air, with CO2, into the bag, whereas the design of the non-rebreather mask keeps your exhaled air out of the bag so no CO2 gets mixed in.

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You want a non-rebreather mask (sometimes called a non-rebreathing mask), not a rebreather mask or a partial rebreather mask.   I don't know what the visible differences are.  I am pretty sure that a rebreather has two sets of completely open holes in the mask (circles of small holes), while a non-rebreather will have a gasket, usually white, behind at least one of those circles of holes.   

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