|
||||||
|
Title: O2 is here..... Post by Samiam on Mar 10th, 2007, 1:40pm They just brough the tanks. I got 2 4' tanks in a lovely green with 2 regulator so I don't have to worry about switching one to the other. I have a non rebreathable mask and a 50' cord to hang myself if this doesn't work. My regulater will be able to be set by me so I'm guessing that I should start at 10 right? I will go to 15. I also just called my drug store and they told me that I already have the 6 nasal sprays that I picked up on the 5th and I can't get anymore until the 24th. So now to figure out how to get more. But then hey I might not need them right? Again thanks for the support I couldn't of done this without any of you. Sami |
||||||
|
Title: Re: O2 is here..... Post by Brewcrew on Mar 10th, 2007, 2:12pm on 03/10/07 at 13:40:42, Samiam wrote:
LMAO! [smiley=laugh.gif] Quote:
10 lpm is a good place to start. Quote:
You might not. But ask your doc for samples. Last time I asked for samples of my preferred abortive triptan, I walked out with over $400 worth in my hand (at retail). |
||||||
|
Title: Re: O2 is here..... Post by Gator on Mar 10th, 2007, 2:49pm 1st: Check your mask for vent holes. Some have a safety vent that allows outside air in to keep you from suffocating should you fall asleep wearing it and the tank runs of air. This will reduce the total concentration of o2 you are getting and make it less effective. Remove the head/neck strap and tape over any holes that will allow outside air into the mask. 2nd: I would start at 15 lpm. Oxygen is relatively cheap compared to other abortives. Better to start high and work your way down to the level that's right for you and get the full benefit than to struggle through upping the flow rate a little at a time and it not be as effective. When you are using it, if the bag stays full and a lot of excess 02 is blowing out the sides of the mask, then reduce the flow rate a little at a time until the mask deflates when you inhale and is fully inflated by the time you exhale and are ready to take another breath. 3rd: Stay on the oxygen for about 5 minutes after the attack is gone. Many people find this makes sure the attack is gone and stays gone. If it hasn't worked in 15 to 20 minutes, it likely will not work for this attack. That doesn't mean it won't work for the next one. Give it a fair chance. As for the limited amount of nasals, have your doc write a letter of medical necessity to your insurance company for the amount you need. Use their full appeals process until you either exhaust all options or get what you need. Until then, like Brewcrew said, ask your doc for samples. Some docs keep a large supply on hand, but won't give them to you unless you ask, so ask. Even if he only gives you a couple, that a couple more than you had. Good luck with this. I hope it helps. Mike |
||||||
|
Title: Re: O2 is here..... Post by Samiam on Mar 10th, 2007, 6:58pm You guys are get. I know if anyone can drag my ass through this it will be all of you. As for asking about the samples I did and he said he would contact the drug rep so I will see. I will also try to have them appeal this but like last time by the time it goes through I'm already done my cycle. Fingers and toes crossed for this. Sami |
||||||
|
Title: Re: O2 is here..... Post by chewy on Mar 10th, 2007, 10:41pm If the appeal goes through then STOCKPILE. Gather up as much as you can when not in cycle so that when a cycle hits you've got a supply. We are like fucking squirrels gatherings nuts for winter. |
||||||
|
Title: Re: O2 is here..... Post by LeLimey on Mar 11th, 2007, 4:46am Sami I'd also reiterate to start at 15LPM and work down rather than work up hon and I definitely agree with the stockpiling suggestion, sadly because of limitations imposed by insurance companies who have no concept of what we go through only the $$$ - its something that we do to get by. You have no idea how reassuring it is to have that little arsenal ready to fight with either! Oh and you are so not allowed to hang yourself with that 50' cord - we want to borrow it to string Chewy up instead pretty please?!! ;;D |
||||||
|
Title: Re: O2 is here..... Post by Samiam on Mar 11th, 2007, 9:52am Ok one part of good news. The O2 aborted once I figured out that I didn't have to remove the mask to blow out the air I could just leave it on and beath normally. That was a site...Next....the 50 ft cord allows you to use the bathroom also....LOL but the cluster came back 2 hrs later. Is this common? I just used it again and this time took the Imitrex and off to nighty night land I went. It seems that I'm getting hit a couple times a day but I guess that stands to reason since I am now going into week 3 of a much prayed for 6 week cycle. As for stocking up I did that and paid out my ass for the stuff only for some of it to go bad the other I gave to another cluster person at the Doctor's office. I just don't know how long I will remain in remission. The last time was almost 5 yrs and I have yet to find anything that will last that long. All I want is 30 nasal sprays and the rest I will handle with other things. If caught right away I can take fiornal not recomended but it will work for me. You just can take it all the time because of rebound. Now as for Imitrex I haven't ever had a rebound from that nor have I had a cycle extended. Now to figure out how to strap this 4' take to my back and you now can call me rocket man...... Sami |
||||||
|
Title: Re: O2 is here..... Post by Samiam on Mar 11th, 2007, 9:54am Tank I mean tank....geezzz brain dead comes with this too. ;;D Sami |
||||||
|
Title: Re: O2 is here..... Post by LeLimey on Mar 11th, 2007, 10:19am Sami my favourite tip for using o2 is this - and I've never had a hit come back! After you have aborted the hit stay on the O2 for another 5-10 minutes gradually reducing the air flow by a couple of litres a minute and slowly moving the mask away from your face so that your return to breathing "ordinary" air is less dramatic. I got taught this trick a few years ago now and I can safely say its served me very well and the beauty of it also is that it takes a while to "come back down to earth" after getting hit and this stops people badgering you for a bit longer - it just allows you to gether your wits and get back to normal. I hope it helps you, I couldn't be happier that you finally have O2 as well :) Helen |
||||||
|
Title: Re: O2 is here..... Post by Brewcrew on Mar 11th, 2007, 10:37am on 03/11/07 at 04:46:40, LeLimey wrote:
Mike and Helen, I stand corrected. Sami, start bigger and work down. No biggie wasting a little to start - to make sure you're getting enough. You can always dial it down later. Bill |
||||||
|
Title: Re: O2 is here..... Post by TonyG1 on Mar 11th, 2007, 10:48am on 03/10/07 at 22:41:32, chewy wrote:
Amen to what you said Don !!! Being episodic, I made the mistake of not getting my refills from the cycle prior to this past one... as if the beast was never coming to call again. Fortunantly, I had some trex samples my neuro had given me from my last cycle (old but still effective) to get me through until I could get new prescriptions. This cycle ended in January; however, I've gotten ALL of the refills needed or not and have them safely buried for the next time..... BTW -- Love the squirrel analogy !! ;;D |
||||||
|
Title: Re: O2 is here..... Post by Brewcrew on Mar 11th, 2007, 11:01am Sami - Next time you call for more O2, see if you can get a couple of "D" sized tanks along with your regular "E" tanks. They are the same diameter as the E-tanks, but only about 2 feet tall. You might also be able to get what I call a "tank cozy" - it's a padded nylon carrier. That way you can take it with you. Us old pros have O2 wherever we go. I have two huge "M" tanks at home (along with several "E" tanks), a "D" tank (complete with cozy) in the car, and I keep two "D" tanks under my desk at work. Each location has its own regulator and mask, hooked up and ready to go. These are just some ideas for future use. |
||||||
|
Title: Re: O2 is here..... Post by Samiam on Mar 11th, 2007, 8:03pm I'm going to try to do that. I got hit at 3 and thought that I got it right away so I took a forinal that worked yesterday but today it didn't....1 hr into it with no relief I went for the nasal Imitrex but I was already far into the cluster and still another 1hr oh pacing and pain. I'm home now at 7 and just went on the O2 because of the left over kip 3. They are coming stronger and a couple a day. I'm feeling better but to my brain seems to be really not working right. Now that could also be the thyroid meds that we down sized a great deal so bare with me I know what I want to say but it's not coming out right. I can't seem to spell my name. I bet the O2 for the car would have been a life saver. I'm going to call tomorrow about that. Sami |
||||||
|
Title: Re: O2 is here..... Post by Brewcrew on Mar 11th, 2007, 8:20pm on 03/11/07 at 20:03:39, Samiam wrote:
You go, girl! Hang in there - we're all pullin' for ya. Bill |
||||||
|
Title: Re: O2 is here..... Post by LeLimey on Mar 12th, 2007, 4:45am Sami one of the nicest things about reading this thread is seeing you empowered to go and get what you need, its such a good feeling when you can come back from being "drowned" by this to being able to assert yourself and get what you need isn't it? I found that a huge help to me in the early days, I felt like I was getting control again - not the bloody CH. I think that did me as much good as the meds so I'll be shouting along with Brew - YOU GO GIRL!! ;;D |
||||||
|
Title: Re: O2 is here..... Post by Samiam on Mar 12th, 2007, 7:33am Thanks guys. Today's not a great day. I got hit really hard yesterday and all last night. The O2 works but doesn't seem to keep them away. I'm taking 2 nasal imitrex a day now and I just don't feel great. Some days with this I feel like I can kick ass some days I feel like my ass was kicked. I do know one thing for sure. When I come out of a longer remission they come on harder and stronger. Not sure what to do if I only have the O2 and the nasal to take me through this. After all how many of those imitrex can you take a day? I just feel like I'm in a daze. Sami |
||||||
|
Title: Re: O2 is here..... Post by Brewcrew on Mar 12th, 2007, 7:43am Sami, The O2 isn't going to keep them away, it will only abort individual hits. What you need to do next is investigate getting on a preventative. I know you're on some other meds right now, so you should talk to your doc about how those meds will interact with the handful of preventatives we clusterheads have available to us: verapamil, lithium, depakote, methysergide maleate - there are others, but I can't seem to remember any of them right now. Right now about all you can do is be thankful you've found something that will end an individual hit. Both O2 and Imitrex are considered abortives. The next step is investigating the prophylactics. Keep hangin'. Bill |
||||||
|
Clusterheadaches.com Message Board » Powered by YaBB 1 Gold - SP 1.3.1! YaBB © 2000-2003. All Rights Reserved. |