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Topic: O2 not working for me; did it not work for you? (Read 412 times) |
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madaline
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O2 not working for me; did it not work for you?
« on: Jul 22nd, 2005, 7:59am » |
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For the past four or five months I have been on 600mg. TR Verapamil every night for chronic CH. ( 9 years)They relieved the day pains (although I still get breakthroughs once every couple of weeks) but the nights are still awful. I may do a Zomig spray or Indocine, but in trying to reduce my meds, I am now trying 15 liters of O2. I tried it twice so far and it is worthless. It took the edge off but as soon as I stopped the pain escalated again. It seems I am the only one who it doesn't work for. Did it not work for anyone else out there? Any suggestions? Madaline
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| « Last Edit: Jul 22nd, 2005, 8:14am by madaline » |
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Topical
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Re: O2 not working for me; did it not work for you
« Reply #1 on: Jul 22nd, 2005, 9:03am » |
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Sorry to hear that. I am a big believer in O2 as it helped me so much. I am eposidic not chronic. When I take it, I breathe slowly and deeply. For myself O2 usually caps the pain where it will not increase and then will eliminate the attack completely.
The longest I have had to wait was 25 minutes. That attack was a bit of a roller coaster, the pain went to a Kip 8-9 it went down shortly and then back up to Kip 8-9 again. By the time I reached the Oxygen I was well into the attack.
Another thing I recommend is to get on the O2 immediately after you feel the pain coming on. If I can catch it when I get an aura of pain then I never get past a Kip 2.
http://www.aafp.org/afp/20050215/717.html
"In a double-blind crossover study 15 of 19 patients, 56 percent reported complete or substantial relief compared with 7 percent in the placebo group."
Sorry it doesn't work for everyone but is well worth trying. Take care.
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| « Last Edit: Jul 22nd, 2005, 9:04am by Topical » |
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Melissa
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Re: O2 not working for me; did it not work for you
« Reply #2 on: Jul 22nd, 2005, 9:35am » |
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O2 knocked out 90% of my ch's back in my 2000 cycle. BUT, during my last cycle in 2003, it didn't even touch it. I am not sure why it quit working for me, but clusters are tricky devils and they like to morph.
I would keep on trying, and like Topical said, get to huffing as soon as you feel it coming on. Also, are you using a non-rebreather mask with the bag?
Good luck to you!
mel
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BobG
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Re: O2 not working for me; did it not work for you
« Reply #3 on: Jul 22nd, 2005, 9:55am » |
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And keep huffing for at least another 5 minutes after you think the pain is gone.
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madaline
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Re: O2 not working for me; did it not work for you
« Reply #4 on: Jul 22nd, 2005, 12:48pm » |
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thanks Melissa, Bob, "Topical"; no I do not have that non-rebreather mask and bag. I never heard of it. I don't think my O2 company will supply it. Are they obligated to? Or how/where can I get it and is it easy to attach? Thanks loads for the input. Madaline
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Tiannia
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Re: O2 not working for me; did it not work for you
« Reply #5 on: Jul 22nd, 2005, 1:13pm » |
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I know that it does not help everyone. Cant speak from personal exp myself but everyone that does have luck with it says that a non rebreather mask is a neccessity. Look up medical supply places on teh net if your O2 co wont give it to you. Or talk to your doc and see if you cant get a script for it if they need that.
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Melissa
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Re: O2 not working for me; did it not work for you
« Reply #6 on: Jul 22nd, 2005, 2:21pm » |
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Madaline, I'm pretty sure your oxygen supply co. has them in stock. Most O2 suppliers do. If not, you can purchase them off eBay or do a google search for them. If you look at the links to the left of your screen, you'll see one for "oxygen info". There it will show what a non-rebreather mask looks like. It is pretty much mandatory, for O2 to work, to have one of these. If you still can't get one, make a post to request one because some people here have extras I'm sure they'd send to you.
mel
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madaline
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Re: O2 not working for me; did it not work for you
« Reply #7 on: Jul 22nd, 2005, 6:06pm » |
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thanks for the info. on the masks for the O2. I called my O2 co and they said they could get it if my neurologist writes a prescription for it. Sooooo, I'll put in a call to the doctor on Monday. Thanks again. Madaline 
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unsolved1
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Re: O2 not working for me; did it not work for you
« Reply #8 on: Jul 22nd, 2005, 6:11pm » |
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O2 doesn't work for me. I rely on Imitrex injections  At least something works 
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stomper
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Re: O2 not working for me; did it not work for you
« Reply #9 on: Jul 22nd, 2005, 8:35pm » |
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its all crazy is'nt it ! we all are tryin r best! me been tru it all ,the meds that is. verap, 180 in the am, 120 in the night time, also been doing the folic acid 800mcg,plus a one a day multi vitamin, me o2 never worked.... but now it does, 15therms 10 min,,, bam its gone. but might come back if it does, then , do again. but what im learning is , it's what you eat!! plus drink lots of water.... check into it. but i swear, i am ALWAYS WATCHIN WHAT I EAT! its all crazy ,little things like a spice or an additive, tryin hard to nail it down. but i always go back to what mr flash said , little meals tru the day and not to much to it!! and i remember the key word was bland meals so we all have to take this into account! watch what we eat and drink, triggers will take us down!  p.s made some chikin on the grill no barbaq suace, but i did marinate the chikin with some lemon,pepper stuff. man i got nailed 2 days worth o2.... then had to do it...... thehalf viel of trex!! so it's the little things too that nail us. oh by the way the chikin was the bomb, so f..k the beast!!!!! 2allpfdan jimm
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don
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Re: O2 not working for me; did it not work for you
« Reply #10 on: Jul 23rd, 2005, 7:29am » |
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The 02 has never worked for me.
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godsjoy777
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Re: O2 not working for me; did it not work for you
« Reply #11 on: Jul 23rd, 2005, 1:40pm » |
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So sad it doesn't work for you guys....keep trying though....like others have said....it seems to morph where something stops working and then something else starts to work....I don't know what I would do without my O2......I con't stand to be on the triptans anymore as they just gave me more and more clusters throughout the day.....and worse....and tightness in the chest....which scared me....
Hopeing to try some seeds for any future cycles....and maybe we can be done with all of this mess....more or less....
Wishful thinking....but I do stay positive....Thats the only way to fight...
Blessings,
Karen
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E-Double
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Re: O2 not working for me; did it not work for you
« Reply #12 on: Jul 23rd, 2005, 1:53pm » |
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You can buy the non-rebreather masks for literally a few dollars.
You can also take the O2 staright from the hose or from canaster if careful (learned that technique at convention)
O2 works about 70% for me if I get to it quick enough
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rextangle
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Re: O2 not working for me; did it not work for you
« Reply #13 on: Jul 23rd, 2005, 2:06pm » |
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Yep, as Eric just said "if you do it soon enough"....
Run to your tank as soon as you feel the first symptoms, before pain starts ramping up.
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Roxy
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Re: O2 not working for me; did it not work for you
« Reply #14 on: Jul 23rd, 2005, 2:29pm » |
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DO NOT WAIT FOR YOUR NEURO!!!!
You can order a mask online today, get it in a day or two, and the 02 will probably work for you.
Here is a link:
http://www.med-worldwide.com/page177.html
Make sure you are at 15lpm's.
Roxy 
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stomper
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Re: O2 not working for me; did it not work for you
« Reply #15 on: Jul 23rd, 2005, 3:45pm » |
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hey now, had ONE slice of pizza last night 1/2 hour later beast started to churn RIGHT TO THE TANK hey edup i hit that at a 15 " r u sayin it can go faster by this means of the rebreater tube??? or strait out of the tank" man hit that for seemed like 20min i knew i had to get off but the beast was still there at about a 7 so yep u knowit!! 1/2 viel of trex but that kicked in like bam RIGHT AWAY so all in all whats up?? with the o2 sometimes OK or mybe not?? " is it the pie" lol hope all is finding some relief with somthing , an hour is a hour!!! dub-e get back to me on the tube thing!! k. thanks thebest2all jimm 
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BMoneeTheMoneeMan
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Re: O2 not working for me; did it not work for you
« Reply #16 on: Jul 31st, 2005, 1:40pm » |
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There are some people here that O2 does not work for. It does work for me about 90% of the time.
Like people said, keep huffing. Also, use a non-rebreather bag.
The one thing i hate about the O2 is how freakin DRY it is. My insurance will cover imitrex all day long, but they wont give me a moisturizer for the O2. Go figure.
Keep Huffing
BMonee
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madaline
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Re: O2 not working for me; did it not work for you
« Reply #17 on: Jul 31st, 2005, 7:50pm » |
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Hi, thanks for all the feedback. The O2 is definitely taking the edge off a #8-9 pain, but I find I still needed something to get rid of the pain entirely. I have been doing the Excedrin (caffeine) for the last few nights and that has been working well as an abortive for the night attacks when I catch it at about a #4-6. (Of course, the 600mg. 0f Verapamil is still in the picture) So at least the real bad pains don't last very long and the mild shadows are a big improvement. Hope it lasts. And lots of PF nights to all of you. Madaline
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| « Last Edit: Jul 31st, 2005, 7:53pm by madaline » |
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Topical
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Re: O2 not working for me; did it not work for you
« Reply #19 on: Jul 31st, 2005, 8:55pm » |
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madaline,
Did you get the rebreather? If not breathe in slowly through the nose canula and exhale out of your mouth. Get into a rhythm and concentrate on the cool O2 as it enters your nose. Visualize trying to get as little outside air as possible when breathing in. I've had excellent success doing this. Stay strong.
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burnt-toast
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Re: O2 not working for me; did it not work for you
« Reply #20 on: Jul 31st, 2005, 9:13pm » |
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Madeline, O2, Imitrex, Zomig were ineffective for me. I am also chronic and can relate to what you are going through. I've recently had some success with using Anbesol in the nostril on the side of my attacks.
I know it sounds strange but initially I had nearly 90% success but unfortunately success has droped to aborting about 60% of attacks - It really is better than nothing. When attacks are aborted they are usually aborted in seconds to a few minutes - when it works it is fast.
Use a Q-tip to apply to the entire inside of your nostril up to the bony areas (stop just before you begin to sneeze).
Best wishes
Tom
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brainfreeze
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Re: O2 not working for me; did it not work for you
« Reply #21 on: Aug 3rd, 2005, 11:03am » |
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on Jul 22nd, 2005, 7:59am, madaline wrote:| It seems I am the only one who it doesn't work for. Did it not work for anyone else out there? Any suggestions? Madaline |
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Same results for me when I was chronic. It kept the CH from progressing while I breathed it but as soon as I took off the mask, the CH continued on. I finally decided that the delay the O2 caused actually made the HA worse.
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Susan
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BlueMeanie
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Re: O2 not working for me; did it not work for you
« Reply #22 on: Aug 3rd, 2005, 5:23pm » |
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02 aborts about 30% of the time for me. Definately need the right equipment to have any chance at all.
When it doesn't abort, as long as i'm breathing it, it works. Once I take the mask away, the CH returns.
Most time I can't sit still long enough for it to be effective and resort to the Trex.
Good Luck, I hope you get the right setup and it works for you. PFDAN
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madaline
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Re: O2 not working for me; did it not work for you
« Reply #23 on: Aug 4th, 2005, 6:03pm » |
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I agree with the last two of you who wrote. I am having the same results with the O2 as you. So, although I am keeping the O2 tank, I have stopped using it and will do the Excedrin/caffeine thing, since that aborts the pain rather quickly, for me, for now. My days have been relatively good with the 600mg. Verapamil, but the nights still require abortives. PF days to you all. Madaline.
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