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Room for one more new guy? (Read 6004 times)
n_lighty37
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Room for one more new guy?
Aug 25th, 2008 at 1:01pm
 
I was diagnosed with CH 5 years ago, and just started my third cycle this past week.  I get three per night, 9pm, 1am, 4am.  They each last about an hour.  My previous doctors didn't know anything about them, so they prescribed pain meds.  They all thought I was making it up.  I thought I was crazy, so did my family/friends.  Only my wife stood by me.

I've finally found a Primary who believed me, looked into it, and referred me to a neuro.  I'm on Prednisone and Verap as my preventives, and I have Maxalt as my abortive.  I'm only four days in, so it's hard to say how well the treatment is working.  I have an appt on Wed with my neuro, I'm going to ask her about O2...  What shoudl I  know about 02 going into this?  Should I be asking for specific equipment?  Does insurance cover any of the cost?

I hate having these things.  I'm usually such a positive person, but my outlook on life has gone down the tubes staring another cycle in the face.  I don't want to do this forever. Undecided  I'm glad I found this place though.  Thanks for all the info.
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ClusterChuck
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Re: Room for one more new guy?
Reply #1 - Aug 25th, 2008 at 1:09pm
 
There is ALWAYS room for more (unfortunately) in this den of brain defects!  Welcome aboard!

As far as what to ask for, I have two posts that may help you.  They are both in the medical section.  One is stickied at the top called Help in getting OXYGEN prescribed and the other one is down in the lower area, called OXYGEN terms explained.

Basically you need oxygen at a flow rate of 15 LPM, minimum, with a non-rebreathing mask.  Have your doctor write the 'script and then call it or fax it over to an oxygen supplier in your area.  

Check the Oxygen info tab on the left of your screen, and see if Linde has an office in your area,  They know of us, and are VERY helpful.

Good LUCK!

Chuck
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CAUTION:  Do NOT smoke when using or around oxygen.  Oxygen can permeate your clothing or bedding.  Wait, before lighting cigarette or flame.  

Keep fire extinguisher available, and charged.
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DennisM1045
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Re: Room for one more new guy?
Reply #2 - Aug 25th, 2008 at 1:13pm
 
Welcome aboard! 

Chuck has provided you with the O2 getting started info.  Read everything!

I hope your cycle is a short one.

-Dennis-
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Where there is life, there is hope.
Where there is Oxygen, you must use proper caution.
So be safe, don't smoke while using O2. Kill the pain and not yourself.
dennism1045 dennism1045 524417261 DennisM1045 DennisM1045  
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ClusterChuck
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Re: Room for one more new guy?
Reply #3 - Aug 25th, 2008 at 1:18pm
 
n_lighty37 wrote on Aug 25th, 2008 at 1:01pm:
I hate having these things.  I'm usually such a positive person, but my outlook on life has gone down the tubes staring another cycle in the face.  I don't want to do this forever. Undecided  I'm glad I found this place though.


I am like a bad penny ... I am back again ...

I almost forgot about this comment (I am old and senile, besides I ain't none to bright, neither ... Heehee)

One of the best things I ever learned from this site is NOT to let the beast win!  Do not dwell on the hits, dwell on the pain free time between hits!

Live life to its fullest, when you are not getting hit.

NEVER let clusters control your life.

Do NOT cancel doing something because you MIGHT get a hit.

The above comments are VERY easy to make, but much harder to live up to, but you CAN do it!

I have had clusters for 29 years, and the last 9 years have been chronic.  I thought my life was over, and WANTED it to be over.  Then I found this site (about five years ago) and my life is SO much fuller and better since I have WORKED at adopting the above policies.  You can do it too!

I get hit between 8 to 10 times a day.  When I do, I just grab my ammo and fight the beast, and then get back to what I was doing.  The ammo of choice, for me, is first and formost, OXYGEN!!!  Then as a backup, injectable imitrex.

Find the ammo that works best for you, and then ENJOY life!

Chuck (the motor mouth)
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CAUTION:  Do NOT smoke when using or around oxygen.  Oxygen can permeate your clothing or bedding.  Wait, before lighting cigarette or flame.  

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BrianJ
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Re: Room for one more new guy?
Reply #4 - Aug 25th, 2008 at 2:01pm
 
Hi and welcome

I dont think anyone could have said it as well as chuck so i will just say sorry you have to be here but this is a awsome place and life will now get better if your willing to learn these guys are so willing to help.

Kind Regards and PF wishes to you
Brian
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PF Wishes to all.&&We all live with this crap But it is not who we are dont let it control you!!!.
 
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Guiseppi
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Re: Room for one more new guy?
Reply #5 - Aug 25th, 2008 at 2:12pm
 
Ignore everything Chuck has told you, nice people in white suits are putting a strait jacket on him as we speak.  Wink

You've been given some great advice already and it sounds like your neuro is pretty spot on with the meds so far. Another really strong vote for oxygen here. 30 years of dancing with the beast and 02 is still my first line and most effective treatment. Breathing pure 02, at a high flow rate, at least 15 lpm, using a non re breather mask. I can abort an attack in as little as 6 minutes, with no "med hang over" afterwards.

Oh yeah, we always have room for one more. Glad you found us, hope we can help you. And get your wife, (a peach of a supporter from the sounds of it) to join the board and hang out with the other supporters. It's a good place for her to get perspectives with how other spouses and supporters maintain their sanity when their significant other is getting slammed! Smiley

Guiseppi
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ClusterChuck
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Re: Room for one more new guy?
Reply #6 - Aug 25th, 2008 at 2:23pm
 
Guiseppi wrote on Aug 25th, 2008 at 2:12pm:
Ignore everything Chuck has told you, nice people in white suits are putting a strait jacket on him as we speak.


Harrrrrrumphhhhh!!!

And here I though you were my buddy .. and ya gotz SUCH a cute butt, too ...

<Scratching his name off the buddy list and put over to the "I'll get you for that" list>

Oh wait!!  Who are these nice looking men in white suits, coming into my office?

Oh, they want to have me try on this nice canvas type coat ... Oh my ... Look at how long those sleeves are ...  And what are those leather belts at the end of the sleeves for ?? ??


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Keep fire extinguisher available, and charged.
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n_lighty37
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Re: Room for one more new guy?
Reply #7 - Aug 25th, 2008 at 3:29pm
 
Ha ha...  Thanks for all of the advice and support.  Yah, my wife is a God send.  I don't know what I would do without her.
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Karl
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Re: Room for one more new guy?
Reply #8 - Aug 25th, 2008 at 7:00pm
 
just a welcome from me and those clowns joking around are  some of the best sources for help. thay are awsome.
my coat was the wrong size and they haven't found me since  shhh!!!
don't tell them i am here. Smiley
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Sunset
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Re: Room for one more new guy?
Reply #9 - Aug 25th, 2008 at 10:46pm
 
I'm new to this ( only 6 nights of CH to date) but O2 really helped relieve the pain last Saturday night - except that every 60 minutes it would come back again.

DOn't know of anything bad about the 02, but I'm sure glad it could relieve the pain

Oh- I've also trying to believe that strenous exercise (treadmill) helps to increase theblood flow and lessen the pain - will try this lightly and see if it works when I get a real CH episode
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Bob Johnson
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Re: Room for one more new guy?
Reply #10 - Aug 26th, 2008 at 8:38am
 
By all means, read about O2, but consider:

Adding new meds/treatments, changing dosing on a med before it has time to become effective, dropping one treatment to start a new one, etc. has some real drawbacks:

1. IF some positive results, you don't know what has been responsible because the changes abort the testing phase of any treatment.

2. Is it one med working or some combination? Again, can't sort thru when too many changes are going are too quickly.

3. Potential for side effects increase without any knowing what is the cause, what individual med or combination is operating.

And etc. My main point: work with your doc to give his treatment plan a fair chance before pushing for changes. Collaboration, mixed with deference to the doc's skill, plus a dose of patience will help.
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« Last Edit: Aug 26th, 2008 at 8:40am by Bob Johnson »  

Bob Johnson
 
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Guiseppi
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Re: Room for one more new guy?
Reply #11 - Aug 26th, 2008 at 10:34am
 
plus a dose of patience will help.

What Bob said, with that last line being the key. In the early stages of CH I'd take a pill, wait 10 minutes, when the pain didn't stop I'd go back to my doc screaming that didn't work either!!! I tried cafergot early on in my CH "career," and dismissed it entirely. Now cafergot, combined with my oxygen is the magic 1-2 punch for me. You can't go wrong with the oxygen, use it as your back up while you "patiently" explore the options with your doc. It's damned hard to be patient when you're getting slammed, but the payoff is SO worth it when you finally find the ffective preventative and abortive routines. Wishing you luck.

Guiseppi
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"Somebody had to say it" is usually a piss poor excuse to be mean.
 
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thebbz
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Re: Room for one more new guy?
Reply #12 - Aug 26th, 2008 at 1:01pm
 
The more you know ,the better to battle with the beast.
Hello and welcome.
thebb
Get the 02
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BarbaraD
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Re: Room for one more new guy?
Reply #13 - Aug 27th, 2008 at 10:07am
 
Welcome to the funny farm Clusterville. Pull up a chair and read, read, read. There are 100's of years of experience here (and that's just from Chuckles  Wink ).

We've all been right where you are and KNOW what you're going thru. We've all tried about EVERYTHING (heck, I even tried banana peels around my head - my late hubby came home with that one from a witch doctor in Venezuela!).

O2 seems to be the FIRST line of defense for MOST of us (nothing works 100% for everyone). Chuckles thinks I love him for his body and charming personality, but (just between you and me - don't tell him) it's because he's ALWAYS got his O2 with him and he's "fast on the draw" when I get hit around him. I'm really in love with his O2 tank....

I keep cafergot (ergotomine) for those hits that just won't quit. I hate taking meds, but don't like the pain, so I will take it when the O2 doesn't stop it. The energy drinks along with the O2 has been aborting mine lately and I've been pretty much off the cafergot, so I'm singing the praises of O2. Just make sure you're doing it right. That makes ALL the difference.

Again welcome home. We're here to help and someone's always up around here....

Hugs BD
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echo
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Re: Room for one more new guy?
Reply #14 - Aug 27th, 2008 at 11:47am
 
Glad you found us, sorry you needed to.  Welcome to the group.
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"If you love something, let it go.  If it doesn't come back,  hunt it down and kill it". Proud father of a US Marine,  Marine turned COP, Navy Corpsman, and KS Army National Guard. Our  4 sons serve.
 
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n_lighty37
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Re: Room for one more new guy?
Reply #15 - Aug 28th, 2008 at 12:06pm
 
I apologize if this has already been answered somewhere else...

I went to my neuro on Wednesday and got my oxygen script.  She seems extremely knowledgeable about CH, which is awesome.  She prescribed exactly what you guys talk about in terms of 02 except for one thing.  She prescribed a NASAL MASK.  Not the tubes ... a mask that only covers your nose.  She said it makes less of it go into your lungs via the mouth and more of the 02 go directly into your nasal passages.  Do any of you know if this will work?  Or do I still need to get ahold of the full face non-rebreathing mask?

Also, thanks again for all of your help and support.
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BarbaraD
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Re: Room for one more new guy?
Reply #16 - Aug 28th, 2008 at 12:16pm
 
Get a non-rebreathable mask. Go to the Linde site (O2 info on the left) You can order one there. Trust US on this one...

Hugs BD
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Ernie Moss aka Wishbone
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Re: Room for one more new guy?
Reply #17 - Aug 28th, 2008 at 5:29pm
 
Man I am sorry you had to be here but as others have said glad you found us.  Although I am considerable younger than ClusterChuck and a hella lot better looking and according to BD a much cute butt I must concede he had provided you with great advise about the O2.  I have had CH for almost 13 years with very poor abortive treatment, almost comical if it weren't so painful to remember. A few years ago I was prescribed an O2 concentor and this really helped tremendously but I had to use triptan spray in combo to aborb almost anything over a 6 unless I wanted to wait 30 minutes.  This year I went to the O.U.C.H Convention and was sold on O2.  Now I have 6E tanks and an MM Tank and a 25LPM Regulator and a non-rebreather mask as Chuck mentioned you could get from Linde.  I am in a horrible cycle for me (normal for Chuck) getting hit 4-8 times a day, and unless it is 7^ kip I can abort in less than 10 minutes.  I am getting use to carrying my E Tank around with me (no prob at office because I keep 2 there as well), but I just go on and if in a restaurant and get hit, I go out to car and hit the beast back, of course some times my food is a little cold or Julie may have sneaked a bite, but that's okay.  Fight the beast and get the O2, I personally would spend the extra $ and get the 25lpm regulator, and get a good non-rebreather mask.  Again glad you found Cluster Headaches and I wish you PF days soon.  Wishbone.
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It don't cost a nickel to be nice and by being so you might just make someone's day.&&Ernie Moss
 
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mezza
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Re: Room for one more new guy?
Reply #18 - Aug 28th, 2008 at 11:56pm
 
Just saying Hi and Welcome!  Hope you got your o2 sorted out.  just a quick tip - may or may not work in your situation.  When I was first prescribed O2,  the home health company handed my husband the nosa cannula thing .  I had told my husband they would probably do that and told him to specifically ask for a non rebreather mask.   He then asked for the non rebreather instead of the nose thing and they handed it right over.  No problemo.  The only thing written on my script was O2 for Cluster Headaches, nothing about masks etc.   

Not sure if it'll work for you , but can't hurt to ask.


Glad you joined up-

Kelly
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ClusterChuck
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Re: Room for one more new guy?
Reply #19 - Aug 29th, 2008 at 12:35am
 
Ernie Moss aka Wishbone wrote on Aug 28th, 2008 at 5:29pm:
Although I am considerable younger than ClusterChuck and a hella lot better looking and according to BD a much cute butt


ARRRRGGGGG!!!!!!


Stabbed in the back!!!


And to think I USED to like Ernie ...

<scribble, scribble, scribble ... ANOTHER name added to the "I'll get you back, sukka" list ...>

Chuck

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ClusterChuck
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Re: Room for one more new guy?
Reply #20 - Aug 29th, 2008 at 12:41am
 
BarbaraD wrote on Aug 27th, 2008 at 10:07am:
There are 100's of years of experience here (and that's just from Chuckles

BarbaraD wrote on Aug 27th, 2008 at 10:07am:
Chuckles thinks I love him for his body and charming personality, but (just between you and me - don't tell him) it's because he's ALWAYS got his O2 with him and he's "fast on the draw" when I get hit around him. I'm really in love with his O2 tank....


<Sniff ... sniff ... >

"Why's everybody always pickin' on me?"

(Guess I'm showing my advanced age by quoting that song)

Here I try to be such a nice, pure, sincere, compasionate, and conservative person, yet all I get is abuse ...

<sigh ...>

Chuck
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n_lighty37
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Re: Room for one more new guy?
Reply #21 - Aug 29th, 2008 at 7:38am
 
Oh Chuck... you know they love you.

Wink
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Batch
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Re: Room for one more new guy?
Reply #22 - Aug 29th, 2008 at 2:09pm
 
n_lighty37 wrote on Aug 28th, 2008 at 12:06pm:
She prescribed a NASAL MASK.  Not the tubes ... a mask that only covers your nose.  She said it makes less of it go into your lungs via the mouth and more of the 02 go directly into your nasal passages.  Do any of you know if this will work?  Or do I still need to get ahold of the full face non-rebreathing mask?


Interesting Rx…  I wonder how well your doctor actually understands cluster headaches? Did she ask you if your eye on the hit side starts watering around Kip-6 to Kip7?  And, did she ask you if your nose started running and became congested at that pain level as well?  I don’t know about you, but when my attacks reach Kip-6 – Kip-7, both happen to me and that makes inhaling through my nose difficult to impossible as the pain level rises.

Having said that, I need to be careful not to dismiss a new method of administering oxygen therapy out of hand.  Your doctor may be on to something I’ll go into a bit later, but I wonder where she thinks the oxygen goes after it’s inhaled through the nasal passages?  Two years ago I became painfully aware that the 7 to 9 liters/minute flow rate suggested in the standards of care/treatment for cluster headaches and initially prescribed by my doctor was insufficient.  I found that 15 liters/minute worked better and that even higher flow rates were even more effective in aborting my attacks.  I started discussing these higher oxygen flow rates over a year ago here on the boards and in a Supplemental User’s Guide for Oxygen Therapy several of us developed and posted on the OUCH web site about that time…

I now use much higher flow rates, and wouldn’t start oxygen therapy at anything less than 25 liters/minute.  Having researched this topic extensively over the last two years, I’ve posted the rational for using these higher flow rates several times as being very safe, very effective, and far less invasive than all the other preventative and abortive medications that carry some onerous side effects.  One of the latest of these posts is on the Medications,  Treatments,  Therapies forum, in Chuck’s post titled ‘Help in getting OXYGEN prescribed’ - Reply #6.  The short answer from that post is when it comes to using oxygen therapy as an abortive, oxygen is your friend and CO2 is your enemy – Use an oxygen flow rate that supports hyperventilation.

Now for the bit about passing oxygen through the nose and nasal passages…  This will get a bit long winded so please bear with me…  The surface area of the nasal passages is much larger than most would suspect, but it’s nowhere near the surface area of the lungs that are estimated at a surface area of some 160 m2.  That’s almost equal to the area of a singles tennis court and 80 times the area of our skin!  Accordingly, the amount of oxygen absorbed into the bloodstream through the nasal passages would be insignificant when compared to the amount of oxygen absorbed by our lungs, but there is another factor to consider.

We’ve all found that cold ice packs on the head, neck, and face, chewing ice, and drinking cold fluids appears to help in the process of aborting our attacks.  The basic principle behind this is cold stimulates vasoconstriction.  I took that one step further in the User’s Guide where I suggested in one of the tips about a technique of using the mouthpiece attachment on the oxygen mask manifold shown below on the left and allowing the oxygen to free-cycle through the mouth, up into the back of the nasal passage and out the side of the nose on the hit side.  

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O2PTIMASK™ Mouthpiece and Facemask Configurations


The thought here was that the very dry oxygen would cool the nasal passages, not from the temperature of the oxygen, but rather through the process of evaporative cooling.  As the sphenopalatine ganglion is located at the back of the nasal passage and it’s much closer in proximity and actually linked neurologically to the trigeminal nerve, it stands to reason that cooling that area could be beneficial in aiding the abort process by stimulating vasoconstriction in and around the trigeminal nerve.

There’s another cluster headache abortive therapy used by some neurologists that lends further credence to this notion.  That therapy involves intranasal administration of a topical 4% lidocaine solution to anesthetize the sphenopalatine ganglion that’s located at the back of the nasal cavity.  There are also several studies suggesting that the sphenopalatine ganglion participates in the mechanisms of cluster headache pain.  These findings indicate the local administration of an anesthetic agent such as a lidocaine, as a sphenopalatine ganglion block, is effective in aborting cluster headache attacks.

Although any comments on the efficacy of free-cycling oxygen through the mouth and out the nose would be anecdotal at best, I’ve found using this technique has a soothing effect when used for 20 to 30 seconds as a break from breathing 100% oxygen at the higher respiration rates that support hyperventilation.  It takes a few second to master this technique, but once you relax the back of your throat and exhale gently through the nose, you’ll feel the flow start.  

I also allow the reservoir bag to fill completely so there is sufficient pressure to allow the oxygen to work its way through congested nasal passages.  If the nasal passage on the hit side is too congested, I gently press on the opposite side of the nose to block the flow from that side in order to insure the evaporative cooling is directed to the hit side.   The longer you let the oxygen free-cycle, the colder that area of the nasal passages get.  Although higher oxygen flow rates accelerate the evaporative cooling effect, I found this technique is just as effective if I adjust the flow rate down to 15 liters/minute during these short free-cycle sessions.  It works for me.

Take care,

V/R, Batch

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« Last Edit: Aug 29th, 2008 at 2:13pm by Batch »  

You love lots of things if you live around them. But there isn't any woman and there isn't any horse, that’s as lovely as a great airplane. If it's a beautiful fighter, your heart will be ever there
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Ernie Moss aka Wishbone
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Re: Room for one more new guy?
Reply #23 - Aug 29th, 2008 at 3:42pm
 
Batch as always a great post. I would only add if you are having a lot of hits and several at 6kip and higher and present these facts to your neuro and he/she prescribes lidocaine as the abortive, then my suggestion is after they give you the prescription for O2 is to thank them kindly and make a fast exit. Batch my concentrator may have the mask like n-lightly is describing I think and tube from the machine enters at the bottom so it shoots up toward your nostrils so on shadows or 5kip or below I do exactly what you describe, except I breath every other time through my nose since there is no bag to fill and if my nose is not stopped up I may breath every breath through my nose.  It feels good and honestly seems to abort faster, of course the machine is only at 10lpm, but doing it this way I ususally can abort a 6kip or below in 10 minutes, but anything higher I had to use triptan.  Of course now I use the O2.
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n_lighty37
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Re: Room for one more new guy?
Reply #24 - Aug 29th, 2008 at 5:30pm
 
Ok...  Most of my attacks are kip 7+.  I very rarely fall below that in a regular episode.  I did discuss the nasal restrictions with my neurologist.  I mentioned to her about the non-rebreathing mask, and she told me that used to prescribe them exclusively.  She said she has had great success with using the nasal mask in her other cluster patients (she apparently has around 20 or 25 other cluster patients).  I spoke with the guy at the 02 supply place today (btw, just got my 02 tank and machine  Grin) and he gave me both the non-rebreathing mask, and the nasal mask.  I'll keep you informed as to which one works better for me.

Thanks for all of the info, that was crazy informative. Smiley
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