Luis Posted February 12, 2020 Share Posted February 12, 2020 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. 2 Quote Link to comment Share on other sites More sharing options...
CHfather Posted February 13, 2020 Share Posted February 13, 2020 (edited) 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 February 13, 2020 by CHfather Quote Link to comment Share on other sites More sharing options...
FunTimes Posted February 13, 2020 Share Posted February 13, 2020 This regulator will work on E tanks https://www.amazon.com/EverOne-Oxygen-Regulator-Liters-Connection/dp/B07L9P7V55/ref=sr_1_fkmrnull_1_sspa?keywords=25plm+oxygen+regulator&qid=1554376658&s=gateway&sr=8-1-fkmrnull-spons&psc=1 This one will work on the M and M60 tanks https://www.amazon.com/Oxygen-Regulator-Standard-Body-CGA540-protector/dp/B00BXRBJG8/ref=sr_1_fkmrnull_3_sspa?keywords=540+CGA+oxygen+regulator+0-25lpm&qid=1554376819&s=gateway&sr=8-3-fkmrnull-spons&psc=1 The mask can be found here http://www.clusterheadaches.com/ccp8/index.php?app=ecom&ns=prodshow&ref=clustero2kit 3 Quote Link to comment Share on other sites More sharing options...
dmlonghorn Posted February 13, 2020 Share Posted February 13, 2020 2 hours ago, FunTimes said: This one will work on the M and M60 tanks https://www.amazon.com/Oxygen-Regulator-Standard-Body-CGA540-protector/dp/B00BXRBJG8/ref=sr_1_fkmrnull_3_sspa?keywords=540+CGA+oxygen+regulator+0-25lpm&qid=1554376819&s=gateway&sr=8-3-fkmrnull-spons&psc=1 15 LPM wasn't cutting it for me so I bought this regulator, very much recommended. 2 Quote Link to comment Share on other sites More sharing options...
Luis Posted February 15, 2020 Author Share Posted February 15, 2020 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!!! 4 Quote Link to comment Share on other sites More sharing options...
CHfather Posted February 15, 2020 Share Posted February 15, 2020 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. Quote Link to comment Share on other sites More sharing options...
Markmetl Posted March 8, 2020 Share Posted March 8, 2020 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 Quote Link to comment Share on other sites More sharing options...
Markmetl Posted March 8, 2020 Share Posted March 8, 2020 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 Quote Link to comment Share on other sites More sharing options...
CHfather Posted March 8, 2020 Share Posted March 8, 2020 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. 1 Quote Link to comment Share on other sites More sharing options...
Markmetl Posted March 8, 2020 Share Posted March 8, 2020 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. Quote Link to comment Share on other sites More sharing options...
Markmetl Posted March 8, 2020 Share Posted March 8, 2020 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! Quote Link to comment Share on other sites More sharing options...
Markmetl Posted March 8, 2020 Share Posted March 8, 2020 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... Quote Link to comment Share on other sites More sharing options...
Markmetl Posted March 8, 2020 Share Posted March 8, 2020 Almost, but no. Quote Link to comment Share on other sites More sharing options...
Into Light Posted April 10, 2020 Share Posted April 10, 2020 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... Quote Link to comment Share on other sites More sharing options...
Markmetl Posted April 10, 2020 Share Posted April 10, 2020 Vials of what are no longer available? Quote Link to comment Share on other sites More sharing options...
jon019 Posted April 10, 2020 Share Posted April 10, 2020 (edited) ...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 April 11, 2020 by jon019 Quote Link to comment Share on other sites More sharing options...
Markmetl Posted April 10, 2020 Share Posted April 10, 2020 I was just wondering because goole says iszembrace is another name for sumatriptan. Splitting my shots, 2mg of sumatriptan has been working for me. Quote Link to comment Share on other sites More sharing options...
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