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Topic: Learning many good things here about my CH! (Read 747 times) |
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Jeff_in_OH
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Learning many good things here about my CH!
« on: Jul 4th, 2005, 6:44pm » |
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Hi all. I have been a member of the "family" for about 11 years now, not knowing this place was here until today. I am in the middle of my 5th cluster since 1994. It is the worst by far in frequency and intensity. I have officially hit the "10" on the Kip scale this time around. Odd thing this time is I get about 3-5 a day where I only got 1 a day before. I get the "hammer" when I go to bed, and usually another about 4:00 a.m. What a way to wake up, eh? Last 4 clusters I only got one at bedtime.
My attacks are episodic about every 2 years and last from 1-3 weeks. Thankfully, my doctor diagnosed correctly on only my 2nd cluster and I started with Imitrex nasal sprays immediately. My doc was out of NS and gave me sample Statdose pens to get me through this weekend. I must say I don't like needles but they work much better than the NS and act much quicker.
I'll be hanging around to learn more. If I can help anyone, don't hesitate to ask.
Jeff in OH
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BobG
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Re: Learning many good things here about my CH!
« Reply #1 on: Jul 4th, 2005, 8:20pm » |
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Welcome to the board Jeff. Sounds like you have things under control as well as they can be controlled.
Have you looked under the oxygen info button on the left side of your screen?
Now get to reading. You have about 6 years worth of information to shift through. Better get started now. There will be a test in 20 minutes. 
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Linda_Howell
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Re: Learning many good things here about my CH!
« Reply #2 on: Jul 4th, 2005, 8:33pm » |
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Quote:| I'll be hanging around to learn more. |
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Please do.....Jeff in Ohio. lol
A lot of people, have spent a lot of time, researching the inormation in the links to the left of this page. There is nowhere else you can "google" or do a search....with more info than right here.
welcome to the club. 
Linda
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Kindness, is gladdening the hearts of those who are traveling the dark journey with us.
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Jeff_in_OH
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Thanks Bob & Linda.
« Reply #3 on: Jul 4th, 2005, 8:37pm » |
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I appreciate the welcome. 
Regarding Oxygen, it is on my list of questions for my doctor tomorrow morning! He said if I needed O2 to go to the ER, I think I will ask to have a small supply here at my house. Getting to ER would take at least 1/2 hour plus the registration time. Folks who haven't lived through a cluster just don't understand the pain. I am also going to ask about using Oxygen injection with my CPAP every night.
More to helping my immediate situation, the cluster I am now enduring, I think my wife is coming to understand the pain by reading some of the testimonials on this site.
Many thanks, and I am looking forward to learning more!
Jeff in OH
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| « Last Edit: Jul 4th, 2005, 8:38pm by Jeff_in_OH » |
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E-Double
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Re: Learning many good things here about my CH!
« Reply #4 on: Jul 4th, 2005, 8:58pm » |
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If you do choose to attempt additional medications, This is a great resource to know like the back of your hand...print it out and give it to your doc
http://www.brightok.net/~mnjday/chtherapy.pdf
It will present the appropriate treatments (preventative,transitional & abortive)that you should seek and your doctor should know!!!
If you want an abortive with the least amount of danger/side-effects O2 should not only be requested but demanded from your doctor!!!
http://www.maplefallswebdesign.com/misc/oxygen/oxygen.htm
Also since you are using the statdose you might want to check out the link to the left of screen on the menu that says "Imitrex tip".....It will teach you a way to split the doses so as to get more bang for your buck....many of us find that we can abort an attack with less meds, therefore if using less we can also get more aborts out of a single syringe....not only saving money but sometimes less sideffects.
Since you do have the "typical" wake you up in the middle of the night horrors then.... Melatonin might be very helpful
Many of us (myself included) have found that taking 6-9mg (some take more) about a 1/2 hour to 45minutes prior to bed have Knocked out the night visits and can finally get sleep.
With the exception of 10-12 times.....I have slept through the night since August '04 (went chronic in March 05).....Still get hit during the day but my overall quality of life is better because I am not as exhausted all the time.
Some people report that it seems to make them worse....The fact is that we are all different and respond differently to everything therefore it may or may not...
The one thing I will tell you as far as my experience was that I had to stick with it...The first night I took melatonin, I was awoken with a doozy only I was too groggy to find my O2 .....It got a lot better for me....I then slept through the night but would get slammed about 1/2 hour after waking up....kinda like knocking the beast off schedule.....then again I was peaking and this cycle has been all over the place with no real pattern.
I stayed with melatonin and have had decent sleep overall.
It may help and it is natural with not too many sideeffects....also ask your doctor b/c if there are any side effects or contraindications...I think they have to do with mild depression.....
Like I said we are all different.
Best wishes, good luck & stay as positive as you can!!!!
Eric
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I can't believe that I have to bang my
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But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
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Linda_Howell
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Re: Learning many good things here about my CH!
« Reply #5 on: Jul 4th, 2005, 10:04pm » |
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Your situation may be a whole lot different than the majority of us, but:
Quote:| He said if I needed O2 to go to the ER, I think I will ask to have a small supply here at my house |
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going to the ER for our oxygen, is unacceptable.
"Small supply" my ass...ask him for a prescription for as many E-tanks as you can afford or as your Ins. Co. will allow. Then make certain by reading here.. that you are using the correct regulator, non-rebreather mask and the right flow rate.
We're all here if you need to ask any more questions, but please don't go to the ER for 02... 
Linda
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bnfreeman
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Re: Learning many good things here about my CH!
« Reply #6 on: Jul 4th, 2005, 10:59pm » |
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Glad to hear you where diagnosed so soon. A lot of us went through this not knowing what was going on. It took many docs over a years time to find out what was going on. I have learned so much from the people here. I know you will too. Good Luck!
Brandi
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kcopelin
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Re: Learning many good things here about my CH!
« Reply #7 on: Jul 5th, 2005, 12:19am » |
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I second Linda's comment about going to ER for O2-I did that one time-drove myself there-holding my pathetic bag of frozen peas on my head-explained that I was having a cluster headache and my doctor wanted me to try O2-that since the headaches only last about 45 minutes would need to try very soon-4 friggin hours later I was seen and the ER doc wanted to give me demerol-get thee some O2
kathy
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Topical
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Re: Learning many good things here about my CH!
« Reply #8 on: Jul 5th, 2005, 5:44am » |
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Welcome Jeff_in_OH, I am Jeff in CA. I tried the Imitrex nasals but it didn't work out for me I am glad it does the trick for you.
I drove with a kip10 going blinded in one eye, screaming as I went down the highway once. No fun there.
I don't understand doctors ignorance when it comes to O2 as an abort. They can't wheel out a portable oxygen bottle to you in the ER? That is rediculous. I would be bitching and yelling. What are we druggies after our fix of O2? "Forget the morphine doc, I need some O2!!!"
Why isn't O2 the first abortive they prescribe? What's the cost compared to say Imitrex?
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bigred
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Re: Learning many good things here about my CH!
« Reply #9 on: Jul 5th, 2005, 11:34am » |
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Hey jeff
There are a lot off careing good people on this sight, and you will find they are straight shooters who will tell it like they see it, so dont be scared away!
On the imetrex, my insuranse was only covering 6
shots a month at 1 copay of 25$. With one phone call from my doctor to the insuranse companys pharmacy department explaining my cronic situation of clusters I was approved for 18 shots per month for 75$
With no insuransse thats 1170$ worth of meds just to abort the pain. Thank god for my job 
Anything you can do to get stocked up to take the fight to the beast and be ready do battle before he is there is a good thing.
When he is in your head and you have no weapons to fight him is a very very bad thing as you know.
Emergency room trips can be avoided, by the time you drive their, your pain could have allready have been terminated at home,.
You are right about one thing I do agree with, the nasal spray plays second fiddle to the statpen,
Remember this when you are battling these PAINFULLCLUSTERS, you dont go to a gunfight with a peashooter.
Take care
Bigred
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UAL_FlyGal
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Re: Learning many good things here about my CH!
« Reply #10 on: Jul 5th, 2005, 2:08pm » |
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on Jul 4th, 2005, 10:04pm, Linda_Howell wrote:
Your situation may be a whole lot different than the majority of us, but:
going to the ER for our oxygen, is unacceptable.
"Small supply" my ass...ask him for a prescription for as many E-tanks as you can afford or as your Ins. Co. will allow. Then make certain by reading here.. that you are using the correct regulator, non-rebreather mask and the right flow rate.
We're all here if you need to ask any more questions, but please don't go to the ER for 02...
Linda
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I'm going to try O2. I can't live like this anymore.
Got slammed 3x's today. All 10's!! 8am ... 9:30am and 11:00am. Each lasted :30. I'm soooo worn out from jetlag (NY-Tokyo). All of my CH hits came out of naps. I tried to avoid napping but couldn't.
Excedrin helps for pain but they are belly-bombers. I took 6 in 3 hours. Very bad for liver.
Can somebody please tell me what I should tell my neurologist about the O2? What type of script should he write out?
My symptoms are on the left side of my face. It feels like a red-hot poker is being jabbed into my left eye. Left nostril gets stuffed/runs. Left ear hurts. Left side of my neck get's sore. Left side of face swells.
Thanks so very much for your help.
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marlinsfan
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Re: Learning many good things here about my CH!
« Reply #11 on: Jul 5th, 2005, 2:35pm » |
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Hey Flygal,
Read, read, read. Lots of good info here. Check out the link on the left for Oxygen info.
Check out this site it has lots of info on meds for treating us.
http://www.brightok.net/~mnjday/chtherapy.pdf
Excedrin is a stomach bomb. What works is the caffeine in it (65 mg per pill). Try coffee instead, strong and black.
What meds do you take? Are you episodic or chronic? Have you been diagnosed by a neuro?
PF wishes,
Jose
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SteCo
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Re: Learning many good things here about my CH!
« Reply #12 on: Jul 5th, 2005, 2:43pm » |
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Quote:| Can somebody please tell me what I should tell my neurologist about the O2? What type of script should he write out? |
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This is a link on the O2 button on the left.
http://www.maplefallswebdesign.com/misc/oxygen/oxygen.htm
Print it out and bring it with you to show the doctor.
Be sure to insist on the High Flow regulator and the non-rebreather mask. Both are equally important and should be written up along with the O2 script. !!
SteCo
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Jeff_in_OH
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Thanks for the help folks.....
« Reply #13 on: Jul 5th, 2005, 6:32pm » |
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Ya'll are a pretty neat bunch, glad I found this site. Thanks E-Double for the paper on treatments. I gave it to my doctor, I am sure he will read it.
To be clear, my doctor is a great guy and definately on my side in this fight. He only suggested ER for O2 if I needed it to get through this past weekend. I had a 10+ Friday night and he said to go there if Imitrex didn't work. Had to take 2 nasal sprays to kill that one.
I went in to see him today and he wrote a script for Imitrex Injections AND home therapy for O2. O2 will be here tomorrow, now I just have to fight with insurance to pay for it. I am sure they will, just have to "convince" them......either pay for it or a trip to ER every night......hmmm seems like an easy decision to me.....
I am just a little more edgy than usual on this cluster since it is attacking 3-5 times a day instead of just once a day like the last 4 clusters. I can't tell until I get well into an attack if I can fight it off. As I am sure you all can attest to, you tend to be conservative and take the Imitrex sooner rather than later. I just want an alternative like O2 to stop using so much Imitrex.
I am discouraged at the lack of availability of meds to some folks as I read more here. I must be lucky in that I get what I need to fight my attacks. My doctor has given me about 6-7 injection modules (2 shots each), and probably 10-12 nasal sprays just to get me through until I could see him this morning (EDIT: I didn't use all this, just nice to have it there when you need it). Not really sure how much my insurance will cover but it tends to be pretty darn good most of the time. Perhaps we need to "share our pain" literally with some politicians and insurance execs to help them realize the hell we live through and to help us.
Sorry for the novel. I will get off my soap box now.
Jeff in OH
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| « Last Edit: Jul 5th, 2005, 6:49pm by Jeff_in_OH » |
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Kris_in_SJ
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Re: Learning many good things here about my CH!
« Reply #14 on: Jul 5th, 2005, 7:53pm » |
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Hi Jeff,
Welcome to the family. I'm glad you followed Eric's links. The treatments mentioned in there saved my life last cycle.
My only additional advice (based on what you said above) would be to not wait and try to fight it off before you take something or hit the oxygen. I'm also episodic, and when in cycle I tend to go from a 0 to an 8 or 9 within minutes. I've learned to grab the Trex right away. 3 to 5 minutes later, I'm OK. The only time I don't grab right away is at the beginning or end of cycle, when the treatment is almost more uncomfortable than the headache. That won't be an issue with O2.
Many hugs .... read, read, read, and keep posting!
Kris
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UAL_FlyGal
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Re: Learning many good things here about my CH!
« Reply #15 on: Jul 5th, 2005, 8:14pm » |
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Dear Jose and SteCo,
My clusters are episodic. Approx. every 2 years. 
Thanks soooo much for the superb links !!!
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Jonny
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Re: Thanks for the help folks.....
« Reply #16 on: Jul 5th, 2005, 8:49pm » |
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on Jul 5th, 2005, 6:32pm, Jeff_in_OH wrote:Sorry for the novel. I will get off my soap box now.
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Sorry son, but your only allowed off the box when we know all about you
lots of good folks here that have been pulling for you years before you got here.
Welcome aboard!!
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It is up to YOU to educate yourself and then help your doctor plan your treatment. If you just sit down in front of your doctor and say "make me better" you are setting yourself up for a great deal of pain.
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Kevin_M
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Re: Thanks for the help folks.....
« Reply #17 on: Jul 5th, 2005, 9:18pm » |
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on Jul 5th, 2005, 6:32pm, Jeff_in_OH wrote:I went in to see him today and he wrote a script for Imitrex Injections AND home therapy for O2.
I just want an alternative like O2 to stop using so much Imitrex. |
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Hi Jeff, welcome.
O2 is great help for sparse Imitrex use as an abortive, but I haven't seen any mention of a preventative started. That is the best alternative to stop using so much Imitrex. Oxygen is great, but not having to use an abortive so often greater.
You mention very short cycles, 1-3 weeks. Getting through them with abortives only seems to be the strategy here but sometimes the length of a cycle is not so predictable, or the interval between episodes. It's good to plan ahead about a possible preventive, it may take some long experimentation, as well as alternatives.
stay prepared.
Kevin M
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UAL_FlyGal
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Re: Learning many good things here about my CH!
« Reply #18 on: Jul 6th, 2005, 12:30am » |
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This CH db is wonderful !! You are all so knowledgeable, helpful and comforting.
Thanks for being here.
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Kevin_M
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Re: Learning many good things here about my CH!
« Reply #19 on: Jul 6th, 2005, 1:00am » |
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FG, the practicality of oxygen onboard, such long flights, and daily multiple locations will make one reach, needing to be prepared in a different way, as good as oxygen is. Anticipate and prepare for such an unfortunate situation. Prevents, with appropriate abortives for home and work.
An occurance just one time in that situation and most likely 300 people onboard will not understand.
Kevin M
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Topical
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Re: Learning many good things here about my CH!
« Reply #20 on: Jul 6th, 2005, 4:12am » |
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Good to hear you got the O2 script. As soon as you feel it coming on get to the mask. I noticed the sooner I did more effective the abort. Relief was usually in 5-10 minutes for myself, only once it didn't go away until after 25 min. (I didn't get to it fast enough).
I hope it works as well for you.
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Jeff_in_OH
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Rookie Mistake on Oxygen
« Reply #21 on: Jul 6th, 2005, 7:33pm » |
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Well, I screwed this up somehow  .
Got the script for the O2 and arranged for delivery today, got it OK and even called the med supply store this morning to make sure I got a non-rebreather mask and high-flow regulator, they said "OK no problem we will send it." Guess what? This needs to be denoted on the perscription (non-rebreather mask)! My doctor's office is closed today so I will have them fax a new script to the med supply tomorrow and hope I get the mask. For now I am using the standard stuff.
If this can save someone else the trouble it will be worth it.
BTW, my regulator goes up to 15 LPM, is this considered high flow?
Thanks for all the info ladies and gents. I am so happy to have found this site, and even passed it along to my manager as his wife is a sufferer also, small world.
Take care now.
Jeff in OH
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E-Double
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Re: Learning many good things here about my CH!
« Reply #22 on: Jul 6th, 2005, 8:09pm » |
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!5 is considered High.
For now.........tape up the holes on the sides of the mask so you just get the O2 and you can manipulate the regulator on & off in between breaths so as not to waste your O2
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I can't believe that I have to bang my
Head against this wall again
But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
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Kris_in_SJ
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Re: Learning many good things here about my CH!
« Reply #23 on: Jul 6th, 2005, 8:10pm » |
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Hi Jeff,
If your regulator goes up to 15 lpm, you're OK - you'll probably need 12-15 to get relief. It's the rebreather mask that's really crucial though. Those little nasal cannula's simply don't deliver enough oxygen to do anything.
Good Luck!
Kris
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Topical
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Re: Learning many good things here about my CH!
« Reply #24 on: Jul 6th, 2005, 9:22pm » |
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I fought my bouts last year using only the nasal type.
Breath in very slowly through the nose, mentally picturing the oxygen stream. Breath out through the mouth. Over and over. Deeper and deeper slow breaths.
I could feel the cool oxygen flow inside my nose and concentrated on that. It was a great distraction. You can abort with the nose canula type. Not the best apparently, but it worked so well that I didn't bother getting the rebreather/bubbler attachment. The only real drawback was some eventual discomfort in the nose due to it being dry. Looking back I think the flow was set at 4, possibly 8/l min. I would step it up only if the HA was coming on.
I hope the O2 works for you. If it does you, will be ecstatic at the results. Knowing it was there waiting to help out relieves a lot of stress.
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