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Topic: Newbie from Indiana (Read 1315 times) |
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Boyce
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Newbie from Indiana
« on: Jan 24th, 2005, 10:57am » |
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HI all....
I'm a newbie to this board, but not new to CH's
For almost 15 years and two sinus surgeries, I fought with my ENT, trying to get newer and better pain killers, I was convinced that I had chronic sinusitus and so was he. Cat scans, MRI's at least once a year.
He finally gave up and sent me to a Neurologist who diagnosed me as a cluster headache sufferer within 15 minutes...It was the first time I'd ever heard of CH's. I fit the checlist to a 'T', I use Prednisone as a maintenance, and Maxalt for the headaches...
Stress seems to bring on an attack for me.....for example, I have three kids and have had an attack within the first few months each time. I'm currently about 1 week into an attack , and I seem to run 2-3 headaches a day......
So now I'm off to read up all the info on this board, it's a great resource already, and I've only been signed up for an hour or so....
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LeLimey
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Re: Newbie from Indiana
« Reply #1 on: Jan 24th, 2005, 11:25am » |
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Hi Boyce nice to meet you! Reading the info here is about the best thing you can do, its a little goldmine! Have you tried O2? Its works brilliantly for me and I can't recommend it enough. If you have any questions about any treatments or therapies feel free to ask any of us and - thisbit is VERY important!!! - Let us know how you are getting on!
Helen
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Boyce
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Re: Newbie from Indiana
« Reply #2 on: Jan 24th, 2005, 12:47pm » |
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LeLimey....
Thanks for the response....
I'm just gald to finally know what the problem is....for so many years I struggled with it, killing my liver slowly with ridiculous amounts of OTC sinus tylenol, et all....was convinced for awhile there that I had a tumor of some sort....I may be the first person in the world to be happy to be diagnosed with CH's...When I have a cluster attack, I generally get 2-4 headahces a day, starting with about 10 mins after I wake up....I've found that caffeine in large amounts is a trigger and so is just one drink of alcohol in any form....
I haven't tried O2 yet, but have given it quite a bit of thought. I'm reading up on it on the board in another window right now  Though I must say, being an old hippie, the 'shroom treatment intrigues me, tho I'm a bit afraid of the legal issues here in the US, as bad as the HA's are I still have my freedom 
The Maxalt seems to help, but sometimes can take 30 mins to take effect, and from what I'm reading, those that use O2 or shrooms successfully seem to get relief in just a few minutes....which is why I'm looking into O2 and/or shrooms.......and they're both natural wich appeals to my old hippie side again...
I find it interesting that most migraine sufferes seem to poo-poo at CH's when I talk about them....especially when I say they are supposedly worse pain, but less in length (I've never had a migraine, so I don't argue).....
anyway....that's awful long winded for a newbie, so I'll quit there.....
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Bob_Johnson
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Re: Newbie from Indiana
« Reply #3 on: Jan 24th, 2005, 2:00pm » |
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Imitrex injection is generally better for clusters because it's faster acting than the other triptans. Since clusters hit hard and fast, you need an abortive which goes to work ASAP.
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Bob Johnson
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dagger
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Re: Newbie from Indiana
« Reply #4 on: Jan 24th, 2005, 3:27pm » |
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By all means, stop thinking about 02 and get it! It is very effective for me and lots of others here. Good luck.
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JJA
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Re: Newbie from Indiana
« Reply #5 on: Jan 24th, 2005, 4:21pm » |
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on Jan 24th, 2005, 12:47pm, Boyce wrote:| 'shroom treatment intrigues me, tho I'm a bit afraid of the legal issues here in the US, as bad as the HA's are I still have my freedom |
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Freedom from jail or freedom from pain...I'm not sure which is more valuable. For a lot of us, there is no cost too high to get your life back. Still, it's not a decision to be made lightly. Being in jail with CH would sure suck!
Jesse
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Boyce
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Re: Newbie from Indiana
« Reply #6 on: Jan 24th, 2005, 5:42pm » |
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on Jan 24th, 2005, 3:27pm, dagger wrote:| By all means, stop thinking about 02 and get it! It is very effective for me and lots of others here. Good luck. |
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I've got an appointment with my Neurologist day after tomorrow to discuss it, I like having the portablility of the Maxalt, but if the O2 works faster, I want some of it at home....
Thanks for the reply....
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Boyce
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Re: Newbie from Indiana
« Reply #7 on: Jan 24th, 2005, 5:51pm » |
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on Jan 24th, 2005, 4:21pm, JJA wrote:
Freedom from jail or freedom from pain...I'm not sure which is more valuable. For a lot of us, there is no cost too high to get your life back. Still, it's not a decision to be made lightly. Being in jail with CH would sure suck!
Jesse |
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Amen....though by some of the stories I read here, I don't have it too bad...my clusters last usually 5-8 weeks and I get 3-5 HA's a day during that time....and I've been known to go 1-2 years between clusters....
It's pretty cool to have such a resource for this...my first post was this afternoon and I'm already picking up some good advice....thanks again....
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LeLimey
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Re: Newbie from Indiana
« Reply #8 on: Jan 24th, 2005, 6:00pm » |
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You can get smaller cylinders which you can take in the car with you or keep at work so O2 is portable too! Just something to bear in mind when talking to your neuro. Let us know how you get on with that too won't you?
Helen
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Kris_in_SJ
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Re: Newbie from Indiana
« Reply #9 on: Jan 24th, 2005, 8:40pm » |
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Hi Boyce,
Welcome to the family - sorry you have to be here, though.
I think I would have only one big concern about the treatment you mentioned you're receiving. That would be Prednisone as maintenance.
Many of us truly benefit from a Prednisone "taper-down." But we usually take it to avoid hits until other preventatives have a chance to kick in. Prednisone over the long haul can really wreck your body, your immune system and your bones.
Many here take calcium channel-blockers as prevents (like Verapamil) at high doses. When started at the same time as the Prednisone (which is tapered off), it can really help.
I can't speak to Maxalt - never tried it. Imitrex injections are my abortive savior - 5 minutes, and gone!
I found alot of info at this link. It has helped my doc, as well:
http://www.future-drugs.com/admin/articlefile/ERN020304.PDF
Good Luck and Keep Posting,
Kris
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Redneck
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Re: Newbie from Indiana
« Reply #10 on: Jan 24th, 2005, 10:56pm » |
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Hey Boyce
The 02 is my lifesaver, I never go anywhere without at least a D cylinder in my truck. I have recently been using the 10mg Maxalt MLT that dissolves instantly. It seems to work rapidly.
Good luck with the beast.
Jim
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Boyce
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Re: Newbie from Indiana
« Reply #11 on: Jan 25th, 2005, 8:07am » |
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on Jan 24th, 2005, 8:40pm, Kris_in_SJ wrote:Hi Boyce,
Welcome to the family - sorry you have to be here, though.
I think I would have only one big concern about the treatment you mentioned you're receiving. That would be Prednisone as maintenance.
Many of us truly benefit from a Prednisone "taper-down." But we usually take it to avoid hits until other preventatives have a chance to kick in. Prednisone over the long haul can really wreck your body, your immune system and your bones.
Many here take calcium channel-blockers as prevents (like Verapamil) at high doses. When started at the same time as the Prednisone (which is tapered off), it can really help.
I can't speak to Maxalt - never tried it. Imitrex injections are my abortive savior - 5 minutes, and gone!
I found alot of info at this link. It has helped my doc, as well:
http://www.future-drugs.com/admin/articlefile/ERN020304.PDF
Good Luck and Keep Posting,
Kris |
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Hey Kris.....
Thanks for the concern on the prednisone.....I think I used the wrong terms when describing the way I'm using it. I am using it as a 'taper down' (60 mg for 2 days, 50 mg for 2 days, 40 mg for 2 days, etc....) and not an ongoing maintenance drug. I am all too familiar with the pred, my wife has had Crohn's disease for 20 years now, and I've become familiar with it's ugly side effects (it is after all a steroid and long term use is well documented as being detrimental to the body in several ways)
I hadn't heard of the Verapamil or similar treatments for maintenance, but you better believe I'll be discussing it with the Neuro tomorrow morning...
Thanks for the tip, this board gets more useful as a resource by the hour
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Boyce
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Re: Newbie from Indiana
« Reply #12 on: Jan 25th, 2005, 8:23am » |
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on Jan 24th, 2005, 10:56pm, Redneck wrote:Hey Boyce
The 02 is my lifesaver, I never go anywhere without at least a D cylinder in my truck. I have recently been using the 10mg Maxalt MLT that dissolves instantly. It seems to work rapidly.
Good luck with the beast.
Jim |
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Hey Jim....
The Maxalt works well....it's purty cool (that's a redneck term for the rest of you out there  ) the way it dissolves on my tongue, and it doesn't taste too bad...
I guess rapidly is a relative word, I find that it takes me about 30mins to get relief from the Maxalt unless I catch it with that very first 'hey, was that a headache starting?' twinge....then maybe only 15 mins of dancing before the relief washes in....
I'm also not real jazzed that I can only take Maxalt 3 times in a 24 hour period, I seem to be running more than 3 HA's a day when I'm clustering....
I really am interested in exploring the O2 as a solution, I'm not a crunchy-chewy, all natural, granola 3 times a day type (no offense to those that are  ) but the idea of being able to abort a CHA with just pure O2 and no drugs really appeals to me....
--Boyce
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Boyce
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Re: Newbie from Indiana
« Reply #13 on: Jan 26th, 2005, 10:20am » |
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on Jan 24th, 2005, 11:25am, LeLimey wrote:Hi Boyce nice to meet you! Reading the info here is about the best thing you can do, its a little goldmine! Have you tried O2? Its works brilliantly for me and I can't recommend it enough. If you have any questions about any treatments or therapies feel free to ask any of us and - thisbit is VERY important!!! - Let us know how you are getting on!
Helen |
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Helen....
just in case you're keeping score at home, I had an appt with my Neuro this morning, but he cancelled due to illness (something about not trusitng a skinny cook  ) So I am rescheduled for Friday the 4th of feb which is like 9 days away......
So I have nothing new to report, other than I'm giving some thought to the welder's supply O2 setup, This Maxalt makes me twitchy and jumpy for a few hours them I feel like a zombie....I had a whopper of a HA last night woke me up after I went to sleep and another good one this morning at work....last night was 35 mins this morning was 45....I have a Respiratory Therapist friend so I could get the rebreather mask prolly free, my question is, does anyone know if your local home improvement store that sells welder's O2, also sells the valve to give me the right pressure/amount? (I'm pretty naive about it, never welded a thing in my life)
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Boyce
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Re: Newbie from Indiana
« Reply #14 on: Jan 29th, 2005, 4:27pm » |
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So...the Neuro is still sick....his asst wasn't about to prescribe o2 without talking to him first.....told me I might try my GP....So I called them up, and they were all about giving me an o2 script, but without a 'desat test' that showed below 96% in my blood stream (not gonna work) or the OK from the Neuro (who is still out sick) the medical supply house wouldn't touch the script....
So I got some melatonin and benadryl today...gonna try that cocktail tonight....see how it works....
In the past few days it's been worst in the mornings....waking me up early with a 8-9 kipper.....hit it with the Maxalt, but then it's back in 2 hours, just as bad....
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msharpe2k1
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Re: Newbie from Indiana
« Reply #15 on: Jan 29th, 2005, 7:03pm » |
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Does anyone really know HOW to take the oxygen ??
I have tried it,at 3 am several times..just sitting on the end of the bed inhaleing in seems to intensify the pain...its too quiet..all I feel is the blasting pain behind my left eye and to suck oxygen for 15 min,as my neurologist tells me to do, is not doing a thing for me.
It is an unbearable 15 min...I just get up and start the slight banging head on the wall trick,not hard,but just enough to give me pain somewhere elese for the moment..does oxygen work for anyone elese,and if it does,how the heck do you get thru waiting for it to work ??? -mike
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Boyce
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Re: Newbie from Indiana
« Reply #16 on: Jan 29th, 2005, 10:03pm » |
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Hey Mike....
I've not been able to try it yet.....but from what I read here, it's important that you get started on it right at the onset of the HA.....Check around in the MB here, there's some good tips on how much/how long/what kind of equipemnt.....
And maybe some of the o2 vets will post some tips in this thread, if we ask nice
--Boyce
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yikes-another-one
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Re: Newbie from Indiana
« Reply #17 on: Jan 30th, 2005, 9:50pm » |
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hardest part about waking up in pain,
is you do not know how long it has been hurtting.
I am a VERY sound sleeper, and if it doesn't
become a k7, I will just roll over and go back to sleep.
Most people that have success with the O2
say they hit it as soon as their eye waters and starts to twitch....not knowing if a shadow will progress to a full blown headache.
KEEP a JOURNAL...that way you will know about what time of day it will happen, and can be prepared.
It sucks to get hit a 3am every morning, but setting an alarm at 2:30 and sucking on oxygen, might just be the trick you need.
Also check the tip, flow rate high, like 12 or 15, I hope
I red that tip right....
my headaches last 50 minutes anyway
so even taken the Zomig pills helps me survive.
Knowingit will end, and not torture me for hours
that is enough to keep me from tearing my eye out.
good luck and best wishes.
TJ
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RichardN
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Re: Newbie from Indiana
« Reply #18 on: Jan 31st, 2005, 2:01pm » |
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Boyce and Mike
02 is my only abortive . . . I go nowhere without it!
If I'm awake, I will use it at the KIP2-3 level and kill him in a few minutes. If asleep, and wake with KIP 4-5, it takes a bit longer (I don't look at the clock anymore, just breath til it's gone) . . . then back to sleep without getting out of bed . . . NO DANCE!
When I first got my script for 02, the day after the worst CH I ever had - still holds that position - I demanded and was given 02 and Verapamil. I was aided in that endeavor by material printed from this site. While the doc did give me an 02 script, it was for an 8lpm regulator, cannulae (little two-pronged nose thingy) and he indicated a 4lpm flow-rate. The way I used it was to turn the regulator to 8 lpm, hold my thumb over one of the "thingies", hold the other one to my mouth and breath slowly enough that you can feel the overflow . . . that is, breathing less than the regulator is putting out. This is a waste of 02, but you end up breathing closer to 100% 02 which is what you need to abort.
02 pain? . . . I hesitate to mention this, because it might deter someone from trying oxygen . . . . and if you have CH, you really need to give it a shot. So . . .
. . . sometimes in the beginning, I would. after a few minutes, get an additional and distinctive "spike" in my temple . . . sometimes quite severe . . . I would stop, give the "spike" a few minutes to subside, and hit it again. Usually by the third round, he was beat. Yes, I had those occasions where he had too good of a hold by the time I woke, and couldn't avoid the dance . . .. but the important part of this messages is that the dance became the exception, not the rule.
I seldom have any indication of that "spike" anymore, and have become so aware, day or night, of impending ch . . . the 02 is there, ready, and EFFECTIVE!
Anyone else have the "spike"?
You owe it to yourself to try. Hardest part is getting the script. Copy the pertinent info.
Probably more than you wanted to know,
Ramblin' Richard (02 lover . . can ya' tell?)
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I can live with the beast as long as I don't have to "dance" with the bastard.
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LeLimey
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Re: Newbie from Indiana
« Reply #19 on: Jan 31st, 2005, 3:38pm » |
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Hi Richard! And you other guys too!
I do'nt get the spike you mention but if I don't continue to breath the O2 at a lower rate for about ten-twenty mins after the ch tones down I ger a rebound with a vengeance! For me at least its important to not just stop but to lower the LPM and carry on for that bit longer.. but like Richard says O2 is the best! I can't advise you about valves and stuff with welders O2, the best one to ask would be Jonny as I know he has spoken of it before. Hope this helps and good luck on the 4th Boyce!
Helen
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Kris_in_SJ
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Re: Newbie from Indiana
« Reply #20 on: Jan 31st, 2005, 3:56pm » |
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Hi Guys,
I'm not a O2 girl - Imitrex injections are my abortive of choice. However, be sure you have a tank with high flow (8-12/min) and a non-rebreather mask. See the oxygen info to the left. For welder's set-up, Jonny is the man with the info.
There's a link to him and several other experts at the bottom of the oxygen page. Good luck!
Kris
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BlueMeanie
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Re: Newbie from Indiana
« Reply #21 on: Jan 31st, 2005, 9:34pm » |
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Welcome to Clusterville Boyce.
Looks like you've got alot of good info already so I'll leave it at that. Hope your cycle is a short one this time around.
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Boyce
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Re: Newbie from Indiana
« Reply #22 on: Feb 1st, 2005, 3:14pm » |
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Hey Blue.....
Thanks for the posts all....got my O2 yesterday....(long story short, the ins comany refused to pay for any more Maxalt until next month and the doc was out sick 'again')....however it's scripted at 3 lpm with nasal cannules....
Fortunately, I have a Resp. Therapist friend, who brought over a non rebreather mask and a straight mask...the non-rebreather was no good, couldn't keep the bag inflated at 8 lpm (which is the max on the regulator) but we taped up the holes on the straight mask, and ran with it at 8 lpm....it works like a champ, aborted three HA's with it, one last night and two today.....although they don't go completely away, they go down to kip 1-2 which I can live with......thinking if I can get 10+ lpm in a non-rebreather I can zap them completely...
Still keeping my appt on the 4th with the Neuro and going to try and get the script fixed so I can use the non-rebreather and get a high flow regulator....
The Dr's office gave me some Relpax samples,(since the ins quit paying on triptans until next month) Took one last night before bed and slept like a champ....fisrt time in this cycle (3 weeks today) I haven't been up at the 4-5-6am timeframe with a kip 7+.....not sure if it was the o2 or the Relpax or even (wishful thikning) the cycle breaking early.....
Things are looking up fo sho.....and I have alot of the people in this group to thank for helping me keep informed and sane
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LeLimey
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Re: Newbie from Indiana
« Reply #23 on: Feb 1st, 2005, 3:18pm » |
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Oh Boyce I'm chuffed to bits for you! Imagine what you'll do with a higer rate of O2 huh?! Its a long wait to Friday but please let us know how you are getting on again. It boosts all of us to hear someone getting on top of it!
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RichardN
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WRe: Newbie from Indiana
« Reply #24 on: Feb 2nd, 2005, 1:04am » |
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Way to go Boyce,
See why those of us it works for are so jazzed about 02?
I do have the 15 lpm regulator, but like yourself, was given the 8 lpm reg to begin with, which is why I posted the 02 info re 8lpm/cannula. They had to special order it and the non-rebreather mask was backordered forever . . . ended up getting one from a local hospital.
My 02 supplier now has three other patients using 02 to abort clusters and I have sent them to this site to learn why (they've also given me about 12 free tanks over the last few months (I usually pay $10 per tank).
Make the beast stand in the corner . . . you don't wanna' dance.
Be safe,
Richard
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I can live with the beast as long as I don't have to "dance" with the bastard.
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