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Luis

Oxygen help

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So, I am finally going to get the oxygen this weekend!!!!! I need the tank and what else?? Can somebody help me with the things that I need please. 

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Fantastic! Are you getting medical oxygen? If so they'll supply a regulator, (probably only goes to 15lpm) & a nonrebreather mask. If you get small E medical tanks they'll provide a cart.

Edited by Brain on fire

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Luis,
You might want to look over the discussion of oxygen here: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/

The guy in this youtube video does a good demonstration of a standard breathing strategy, starting at 3:18. http:// https://www.youtube.com/watch?v=PtFHRIQN17s&t=127s   Your mask will not look like his (he is using the one that is made particularly for people with CH), but yours should have a bag on it that fills as you are breathing out and empties as you breathe in. Many people with CH find that it helps them stop the attack faster if they quickly drink some caffeine or an "energy shot" such as 5-Hour Energy as they are starting on the O2.

Edited by CHfather

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2 hours ago, FunTimes said:

15 LPM wasn't cutting it for me so I bought this regulator, very much recommended.

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I GOT THE OXYGEN!!!!! E tank. I already ordered the mask and will order the regulator. Thankfully, the vitamin d is keeping my clusters away. But it’s been some good days guys!!!

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Good for you for making it happen, Luis!!

At 15 lpm, the E tank has about 45 minutes worth of O2.  Closer to 35 minutes, realistically.  So now might be a good time to try to get a bigger tank, or more E tanks.

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Hi,

New here.  Started getting them 6 weeks ago after an 8 year gap.  I (finally) got my oxygen tank delivered yesterday.  It's amazing at stopping the pain quickly, but today they are hitting/returning about every 2 hours.  I went from 4-5 a day, with sumatriptan injections giving me 4-6 hours of peace.  Now, the pain is gone much, MUCH quicker, but they are happening way more often.  Is this typical when starting oxygen, am I don't my something wrong or any suggestions to help the relief stay longer?

Thank you very much.

  Mark

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Posted (edited)

Welcome @Markmetl a bit more info will help us help you. What are you setting your oxygen to? If it isn't optimized that could be the problem. Are you staying on after the attack is aborted? If not that could easily be the problem. Energy shots/drinks? Had you been using 6mg Sumatriptan injections? Had you been using them frequently?

Edited by Brain on fire

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Hi thanks.  I was given the wrong mask, taped it up to try to help, it did a bit.  I ordered my clustero2 kit yesterday.  I have the tank set at 15.  I stay on for a few minutes after the pain is gone with a lower setting (8) with normal breathing.  Bought some energy drinks but haven't had any caffeine in 6 years so I'm hesitant, but if it will help, I'll down one right now.  And yes, 6mg injections.  They Work great, but insurance says I used them too fast and won't give me more.  ( How is 6 injections a 30 day supply with cluster headaches?).  

Thanks for the quick reply

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Posted (edited)

If your tank gets low on oxygen that can reduce the effectiveness of your aborts. It can take a bit to perfect the  oxygen technique that works for you, so be patient. Get on as soon as you feel a hit coming, stay on after the abort is successful. Oh, a Kip-10 is much harder to abort. Most with CH don't need 6mg injections, many who use them split the injections. Best overall to use the oxygen to abort & save the injections for emergencies. Sumatriptan can cause more problems including increases in frequency, duration & severity (to name a few). The energy shots/drinks or even just caffeine can really speed up your abort times.

Edited by Brain on fire

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Splitting injections: https://clusterbusters.org/forums/topic/2446-extending-imitrex/   Or, ask for a prescription for vials and syringes so you can measure out your own dose.

There's a lot of caffeine in energy shots (the smaller things like 5-Hour Energy).  Not as much in the standard bigger drinks (RedBull).  You would probably do fine just brewing some coffee and keeping it in the fridge.

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Thank you both Soo much.  I will give the energy drink a shot next time and will DEFINITELY split my injections.  

I'll give you an update on the energy drink after the next attack, probably in the next hour or so.  :(

Thanks again!

 

Ps- sorry for hijacking this thread, but the topic fit.  

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Hello again!

OK, I Drank half a NOZ (about as fast and as much as i could, with a straw), not sure if it helped.  BUT, I remembered last night I added the 25' extension tube to my mask.  About half-way thru the last episode, I removed the extension and I noticed a HUGE difference!   Also, I called my insurance urgent care and after answering a few questions about if I knew the dangers of non-breather masks and if I was authorized, they said I can come pick one up this afternoon, free.  Which I hope will help until the Cluster kit comes.  

I will provide updates as to if I get another one in 2 hours, and\or if the extension tube was a problem.  (I didn't hear any oxygen leaking from the connections, but I who knows).  

Oh, I do sometimes hear air coming out of the end of the regulator, is that normal or a regulator problem?

Thank you soo much again!

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Hearing that air concerns me. Turn the oxygen off at the tank, disconnect your mask & hose, turn your regulator to 0 & turn the oxygen on. If you hear air, turn off the oxygen, bleed the regulator before removing it by turning the regulator to anything but 0 for a few secs, remove the regulator, check your washer & try again. If you need a washer or still hear air, you should call your supplier.

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I just did what you suggested.  No air sounds.  Im thinking because of the wrong mask either I'm breathing to slow or too fast and it is releasing the 'extra' oxygen its feeding me?  does that make sense?  

 

I obviously new to the oxygen thing, so I'm asking...

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Posted (edited)

Good thing you ordered the Cluster O2 mask (bigger bag), you may need to go to a higher flow regulator. Many of us use minimum 25 lpm regulators from W.T. Farley Amazon etc. 

Edited by Brain on fire
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