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Oxygen help


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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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  • 3 weeks later...

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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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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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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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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  • 1 month later...
On 3/8/2020 at 2:15 PM, CHfather said:

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.

my neuro says vials no longer available. another option iszembrace...3mg sumatriptan sub-cu. i can’t stand that drug. have a ton of em lying around...

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...been hearing this for 10+ yrs now...and some day it may be true...maybe now....but I can still find it offered online.... and optumrx says in stock (but NOT covered by my medicare plan...this has ALWAYS been an issue with MANY insurance plans...but get the right pharmacy and they will substitute for you)...I'd ask a pharmacist (s) to look up if still available before I gave up on what was and incredibly better option (2 mg per) for me at one time ....compared to the HAMMER of a full statdose of 4-6 mg....

best

jonathan

Edited by jon019
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