I don't mean sucide by any means~ but I was thinking about this for the last few months. For a short while I had a nice clean vacation from my attacks. Went back to hiking, climbing and camping~ Pow Wows and sweat lodge retreats. My life was as full as I could grasp it. Granted the Steriod therapy left me with cushings I was on my way back to health through alternative methods. Then things fell back to cycles, worse than before the steriods. I have declined so many invitations out, scared to do the high risk things I loved (and got me back to a smaller me) This alone is frustrating, but I see myself without my 'survival kit' and it haunts me. I am only 30, and I stopped my carefree camping for a week~ or two if it sounded good. Because what if I run out of this, or that...what if I am reaching post on Monkey face wall and I hit an attack? Deadly I tell ya.
Would like to hear your coping thoughts, or even better~ how you still travel and explore away from the cities meds and treatments. When you don't have 'downtime' to get through an attack. I am still trying to hold onto I will do these things~ either supplements that are more portable. Or...heaven forbid steriods for another free year or two.
If this isn't posted in the right area I apologize, I had a hard time telling if this went here or somewheres else.

You just have to make a choice, do you let CH define who you are, or are you just a person that suffers from CH.  I have no words of wisdom except it's up to you how much you let it affect your life.  I choose to live and be in charge.  I will no longer let CH define me or dictate how I live my life.  No two people cope the same way, but for me I am just too damned stubborn to let it win.  Sorry you're suffering again and hope for the best for you.

Thank you for your speedy response. True, I don't want to be a limited like that, nor do I want to head out unprepared. I suppose its just doing what it takes to do what I want~ even if thats being more prepared. I have done that in a few areas of my life...even though simple, simple never promises to be easy. I will have something to really chew on in anycase.
Trying to work up courage for summer solistice camping.
Thank you again.

You just do.

I've had episodic CH most of my life.  There really isn't any alternative.  

Know what?  It's worth it.   :)

All the best,

George

Hi arcticspirals,
I think every one is different with how they cope with life I think of my self as one of the lucky ones as im not chronic and my hits last around 30-40 min not 1-2 hours. How do i cope well i see it this way in 24 hours i get hit 3 times thats 120 min (2 hrs) of pain the rest being pain free (apart from the shadows wich are just annoying) wich i try to make the most off. I don´t sit around waiting for the next one to hit or worrying about how high it will go i try not to think of it at all. Don´t get me wrong it does get to me and ive had some really bad days when a bullet started to look good but on those days i think of all the people and children with problems and diseases that make mine pale in comparison (this isn´t doing any damage to me physically) i´ve seen alot of things in my life, 2 tours of Bosnia with the army, and ive seen people with nothing left physically and mentally so on bad days i try to think of what i do have eg: a good loving wife, a roof over my head, food in my stomach (and a stomach to digest it), clothes on my back (even if there not designer).

thats how i deal with this and as stated earlier i will control this and not let it control me

mark (eats nails and shits napalm  ;))

The Demon does not get to define who I am. No matter how many times he has defeated me. Although, I do understand how you feel.  At times, the members of this board have been both my family's and my strength. CH is not a lifestyle, but an inconvience.

As for traveling, ALWAYS have an abortive with you. I keep Zomig, protable O2, and Red Bull.

Like this:
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See? While you were busy scrolling down, I was busy living life.

It's really that simple.

Make it a great day. Now, I've got about a half a hundred things to do.

When the issue is a medical condtion the first step in coping is to be using the most effective treatments available. Your message is rather vague on what you are doing and your attitude about medicine. Makes it difficult to move beyond that point--for me.

You may wish to look at this little essay and then get back with more background information for us to engage.

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Quote:

See? While you were busy scrolling down, I was busy living life.

thanks Brew thats about 5 seconds of my life i wont get back
:'( :'( :'(
Roflma

mark (when life is shorter ahead than behind every second counts)

Don't miss the bigger point. ;)

I do not leave home without an abortive when I am in my cycle.

Ok kid - if you get a chance - Come to St. Louis in July to the OUCH convention -- see how most of us LIVE LIFE... A whole lot of us are chronic (no breaks) and we LIVE, WORK and PLAY. CH does not stop us - we're a TUFF bunch and willing to show anyone how to do it.

I'm serious - come to St. Louis and meet with other Clusterheads - it's an eye-opening experience.

Hugs BD :-*

What Barb said!!!  I was episodic for20+ yrs, and chronic now for several.  I would have to figure it up to be sure.  I dont' even bother paying attention to it anymore.  I used to be able to tell you about every cycle, what I did for it, how bad it got, etc., but while Iwas doing all of that I let the good things that were going on, as Lefty mentioned, get away.  I do think being chronic makes it easier because I know I have to deal with it every day, so I don't dread it on PF times, but I determined I'm going to live life until I die.  I will live live to teh fullest of my ability.  That may not be as full as it once was, but as the country song says, "I'm as good once as I ever was!" :D  Since I went chronic I have driven in 47 of the lower 48 states.  I have driven around Rhode Island several times, but necver through it.  I've also been in each of the lower Canadian provinces except Quebec.  Granted it was working, but I have seen some COUNTRY!!!  I've gotten some funny looks in truck stops while dancing in the parking lot, and I've been checked out by the police when I was dancing in my seat on the side of the road, but I went.  

Life is not something that happens to you.  It is something you CHOOSE!

God said it to the nation of Israel ( in the book of Deuteronomy) this way.  "See, I have set before you life and death, blessing and cursing.  Therefore, chose life that you may live..."  I have chosen life.

Jerry

You have a choice in how to live each day. Use each one wisely.

Thank you for your responses, I am thinking this may be what my low tides are. And after all, I made it this far right? Started when I was preteen.
There are always choices, reflection is indeed a beautiful thing though. I made it years without abortives at all, and no preventives. Does that mean I am pampered now? Oh goodness no one answer that.
Booking weekend fun and carrying on!

arcticspirals wrote on Jun 17^th, 2009 at 10:58pm:

Booking weekend fun and carrying on!

Now THAT is a clusterhead!

Good for you!  Continue whatever it is that you have done, and ENJOY life!

If and when a hit comes along, step aside, do what you have to do, and then go right back to living life!

Chuck

arcticspirals wrote on Jun 17^th, 2009 at 10:58pm:

Thank you for your responses, I am thinking this may be what my low tides are. And after all, I made it this far right? Started when I was preteen. There are always choices, reflection is indeed a beautiful thing though. I made it years without abortives at all, and no preventives. Does that mean I am pampered now? Oh goodness no one answer that. Booking weekend fun and carrying on!

We all hit low points with CH.  I've had times (thankfully not lately), where it seemed like CH was getting out of control, and I was punch drunk from exhaustion, due to night after night of having my sleep wrecked while aborting Kip 8 and Kip 9 attacks.  There was the "wonderful" Xmas Eve 2007 Kip 10 attack, when NOTHING worked to stop the CH, and I spent the next 2 plus hours pacing, screaming, crying, going through a box of Kleenex in about a half hour (blowing my nose).  There were other Kip 10 attacks, where I fleetingly wondered if I shouldn't just take a headlong dive off of my apartment's balcony.  Things like this really can bring you down.  But, I keep on keeping on.  I have too many things in life I enjoy doing, to let some stupid CH dictate how I live my life.  I keep on going, and carry my abortives with me at all times - even when I'm out of cycle, since I've had CH cycles start with a bang courtesy of a Kip 8 or Kip 9 attack, during times of the year, when I typically haven't had cycles in the past.  After all, what else can I do?  Life goes on.

Hugs,
Ellen

P.S. - Agostino, is Dr. Baine your headache specialist?  If he is tell him Ellen says Hi.  He was my headache specialist before he moved to Madison.

All above have said it far better than I ever could, but at the very least, let me encourage you to reread all the above..........I think you're getting it!
I would NEVER try to diminish the pain of a hit, nor would I attempt to tell you night after night of sleep dep is good for you, but what I WILL tell you, is Clusterheads are strong. Streonger than any ole beast trying to bring em down.........NOT gonna happen. They're also VERY creative- will FIND a way to get around the beast-they have an arsenal waiting for times when they can't cope, but they WILL NOT LET THE BEAST WIN!
Life is not defined by CH, but, instead, it is the value of the time when there is no pain that defines a Clusterhead.
Like others, I soo encourage you to find a way to get to Convention- or, at the very least, there's a small contingent of us in the Portland area- you're not that far away-we could do a meet n greet, especially when we have already been threatening for too long!
Kimberly? B Monee?? whatcha thinking??

Be well, Arctic, draw strength from this site-it will really help!

:D Cathi

Thanks all! I took the kids out for birthday fun at Enchanted Forest~ local theme park and a childhood favorite. Decided I had to try~ and glad I did. Timberlog ride, ice mountain and even the perfume filled water show. Had a time out after the haunted house adventure thought that was gonna be the end but sent the kids out to another ride and lucky me~ only 30 min long and kip 4~ not even a tear breaker.  woot!
Thanks for the encouragement, camping is back on the schedule!

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arcticspirals wrote on Jun 22^nd, 2009 at 10:15pm:

Thanks all! I took the kids out for birthday fun at Enchanted Forest~ local theme park and a childhood favorite. Decided I had to try~ and glad I did. Timberlog ride, ice mountain and even the perfume filled water show. Had a time out after the haunted house adventure thought that was gonna be the end but sent the kids out to another ride and lucky me~ only 30 min long and kip 4~ not even a tear breaker.  woot! Thanks for the encouragement, camping is back on the schedule!

YAY!! Good for you!!!!  

The hardest part for me has been the fear....will I get hit if I go out with my friends.  Once I realized that if it got too bad I could go home, or I could take the pain meds I learned I can live my life.  My friends/family/co-workers all know when I'm getting hit and can't understand how I can still be at work/the bar/the bonfire...it's a choice.  Unless that day's hit is really severe I can manage somehow.

My first couple of months in this cycle, I went through the depression, the why me, and stopped/slowed down my social life.  Now my sixth month in I just shrug when people ask how I do it.  I don't know, all I know is that I won't let the headaches control my life.  It's going to be there whether I stay at home and miss out on life, or whether I go out and enjoy myself...............just keep your abortive handy, just in case.  Otherwise if you have a significant other they could do what my parter did and roll her eyes at me :D...when she had to bring me mine when I forgot it......LOL

Articspirals - Am glad to read through this thread and see your confidence on venturing out is building. My husband carries the O2 tank and imitrex when we go out. If he feels a CH coming, he just excuses himself and goes out to the car, sometimes I haven't even realized he's left but when he's missing I know where he's gone.  He likes to be alone so I let him be. I guess the point is be prepared, and live on! Don't let this thing deprive you and your family, you suffer enough when you have to, live on the rest of the time! :)

So I'm a little bit late, but I figure what I have to add can't hurt.

I've dealt with chronic illness for the past 14 years. So, I deal with this like everything else.

I tell the condition "fuck you" and continue to do what I want. So a cluster hits, I exit the room, use my 02 or DHE, and go back to what I was doing after an abort.

It's not worse than having to jab myself with an epi pen due to an allergic reaction. I'd rather have a cluster than have my immune system go haywire and decide to try to kill me in public.

Let me put it like this. If you have drop seizures, the solution isn't to stop standing up. You put on a helmet to protect your head, and take anticonvulsants to prevent it. You have to do the same thing with Clusters. You do what you have to, to make your life as normal as possible. The clusters are just a little obstacle that you'll encounter through the day.

And if that doesn't work? Get pissed off at the disease for trying to fuck your life up, and decide to defy it. I've found when nothing else works, getting pissed off that any condition is making my life hell motivates me to fight it. I'm the girl who plenty of doctors have had the "there is no hope' discussion with, and the only thing it does? Is make me decide to prove 'em wrong.

PFDAN
Mystina

Cathi_Pierce wrote on Jun 22^nd, 2009 at 9:28pm:

All above have said it far better than I ever could, but at the very least, let me encourage you to reread all the above..........I think you're getting it! I would NEVER try to diminish the pain of a hit, nor would I attempt to tell you night after night of sleep dep is good for you, but what I WILL tell you, is Clusterheads are strong. Streonger than any ole beast trying to bring em down.........NOT gonna happen. They're also VERY creative- will FIND a way to get around the beast-they have an arsenal waiting for times when they can't cope, but they WILL NOT LET THE BEAST WIN! Life is not defined by CH, but, instead, it is the value of the time when there is no pain that defines a Clusterhead. Like others, I soo encourage you to find a way to get to Convention- or, at the very least, there's a small contingent of us in the Portland area- you're not that far away-we could do a meet n greet, especially when we have already been threatening for too long! Kimberly? B Monee?? whatcha thinking?? Be well, Arctic, draw strength from this site-it will really help! :D Cathi

hey Cathi, I'm new to the site.I'm episodic just started cycle day before yesterday. I'm in Portland, is there a group here? I would be interested. thanks

I admire you all for your courage and attitude. I wish I could write likewise.  But I just can't.  I'm into the first month of a cycle right now and the meds are unreliable. I'm either actually experiencing a CH or recovering from one, all the time.  I can get stuff done, can spend time with the family, etc but going out is challenging.  Because I feel so frail, sick, woozy, weak... doesn't anyone else get that??  Jeez.
Driving is not really an option, because the CH seems to affect my vision, balance, hearing etc. and when it hits it goes to 10 within two or three minutes, max.
Truth is, I don't really WANT to socialise or go rock climbing right now. I feel like hell. 
Anyway good for you guys and your brave posts.
I think this thing is defeating me at long last.

Happywoman, Well what you need to do is get o2.

A great deal of these threads, if you read them, will show you many of us treat the problem with o2. O2 is all I use to treat this problem, and I can beat the beast down in a few moments each and every time.

So no I don't suffer like you do, unless I happen to feel like taking the beast on in it's terms.

Before I knew what to do and when to do it, I was a lot like you, beaten ragged. You are correct it messed with me to the point my vision, hearing and ballance were effected. I was totally miserable, but no more.

I am lucky since my hits come late at night this time, so my days are free. I make up for loss of sleep as I can, and I might get grumpy in day time when I have lost sleep, but most folks who know me know I bite anyway, and so don't mess with me unless they have too.

If you want to controll the beast, instead of it controll you, today you will get started getting o2.

If you have any garage men in your life you can go right now and get on o2 and knock the beast on it's butt.

Even a full blown Kip 10 will be crushed, it just takes longer.

Thank you Mac. I've read up about O2 and asked my GP who had never heard of it and asked me how I would go about getting it (!!) I told him, well, I need a letter from my doctor. We kind of looked at each other for a moment, then moved on from there.   *laughs*
I think I will have to see a neuro. There is one here who suffers from CH himself, so he's ideal, but the waiting list is several months - by which time my cycle will have finished if history is anything to go by.
No, I have no garage people in my life!  Actually I have almost no people in my life, ho hum.
Recently i've read about rebound headaches from 02 and that has put me off somewhat. I got rebound headaches from my meds last cycle and they were worse than the original CH.  Unbelievable pain.
CH sucks.

O2 does NOT cause rebound headaches.

Where, specifically, did you read that?

The term "rebound headache" is very often misused around here. A rebound headache is a specific animal unto itself but most people do not seem to understand this. Bob Johnson once again addressed this and posted a very good synopsis recently.

O2 does a good job of killing a CH, but does nothing to stop them from coming back. Having another attack is not a rebound - it's another CH.

O2 is an abortive, so people also need to seek an effective preventative if they want to reduce the number of hits.

In particular, people using O2 at lower flow rates appear to report "re-attacks" more than people using hyper flow O2(just made that one up - pretty cool term  ;D)

This is only an off the cuff observation - NOT the results of a controlled study. It also mirrors my own experience.

In my little corner of the CH world, high flow oxygen therapy provides me with the ability to put one foot in front of the other and keep going one day at a time.

Marc

Brew wrote on Dec 19^th, 2009 at 4:56pm:

O2 does NOT cause rebound headaches. Where, specifically, did you read that?

I'll back THAT UP!
No no no no re-bound headaches. This is why I use o2 in the first place exclusive of anything else!

For me it works like this:

The blooming thing wakes me up at some god awful hour. I decide whether or not I want to fight, or if I want to be lazy and take a part of the hit.

If not I get up, which 'we' do anyway, because layin there sucks.. I get dressed, currently in loads of feathers and wool since it is some wicked cold outside like -6 degrees below 0 F', and I walk out to the barn breathing cold air deeply to exchange the crud warm air I have breathed while sleeping.

All this may take me 3 to 5 minutes. The CH is just starting to get hard, maybe Kip 5/6.

I turn on the lights, my tank, check the regulator, and sit in a lawn chair, putting my feet up on a 12 ton jack stand.

With in 5 minute the pain is subsiding, with in 15 for sure it is gone, and I turn off the knob on my torch grip and go walking in the star light. I investigate new tracks in the snow for around 5 minutes still breathing deeply, then for good measure I return to the tank and set about a short while breathing more o2.

I don't take more than 10 minutes of real pain, unless I want too.

Then you could say I am strange.. No one I know does what I do, but I do it because i don't want to forget this sort of pain.

Sometimes I don't go get the o2, and once in awhile i will get mad and go have a beer, which is asking for it, but I am me, and I do weird things commonly. This weird thing is the only one that causes me any pain though.

There is NO after effects period.. Now I can't say that about imitrex injections a bit. Sure that aborts the pain right now, but leaves me logy and feeling as if I am drowning. The re-bound I get from that is extremely harsh, and it extends my season by weeks, if I just use that stuff once.

I am a very outdoorsie type of guy, and so is my wife. Other strange things i do is study and work at old woodland skills, so you get the right idea. I start fire with a bow drill and teach it, and do many other odd things under that heading.

I ride a motorcycle a lot in 3 seasons. New Hampshire USA is a tad too cold for that sort of thing in winter. But we rode across the USA and back in 05 into 06. 10 months on the road for no more reason than to see the USA.

I might suggest your doctor has no idea what you are dealing with. o2 and 'us' is very common.

Not like most my means are extremely meager, and I can't afford to run off and spend money on doctors, nor can I go just see one and not take all these tests. The end result is I just happen to be a mechanic of sorts doing what I want, when I want for a meager earning. Being such I gas weld, braze and silver solder, so own 2 torch sets and own one set of small bottle and lease a very large set.

I have all I need to deal with a CH, and to the point if I was alone suffering this wicked thing I would skoff at it.

I can and do beat the tar out of that beast on a mere whim..

There are proven ways to breath, these depend on the type of equipment you choose. If you decide to go primitive with this I am your guy... If not any else here except NAMVET and Marc... These guys use as primitive means like me. There may be others..

I don't understand all of why others use so-called medical equipments, but they do, and it works for them.

There is a lot of reading for you yet, but first I would get in command of some bloomin o2!

Marc knows about single tanks and single regulators i don't. My set up also contains acelelene, which I do not breath! far from it, but the result there is my lines are made side by side as 2 hoses, one red and one green. Green is the only color you want. o2 comes in green bottles, and my o2 gas is the very same stuff medical supply gas is.

I have watched tanks for both be filled off the same set up many times. Both are 100% o2, and nothing less is in your interest.

Sorry for the length, and detail, but I am a wordy old coot, and I don't take nuthin layin down...

Maybe with 02 you will break this, which often changes what the beast will do, but that SOB cries when I change with it and beat him down any time it rears its ugly head at will.

Marc cross posted with me... :)

he brought up 'another ch'. I get this.. Sometimes i end up in the barn 2 hours or so later and again 2 hours after that, for 3 ch nights. Not much fun, but it beats a size 12 boot in the butt.. or a Kip 10 in the head.

We are all hangin out there hoping somehow, somewhere, someone finds a blocker that will allow all of us to forget these CH's, for ever...

I myself look for ways, but so far I just end up with burned fingers...  ;D

Primary difference is that I cannot afford the delay of getting dressed and getting to the barn - gotta be NOW for me. I go from zero to sheer pain, fast.

The difference of 60-90 seconds is very real to me. O2 is my wonder drug but if I let a CH bloom I am screwed for 20-30 minutes. Hit one of the many tanks strewn around my place immediately and I'm back asleep in 6 minutes.

- Swing out of bed and grab the baby sized tank and open the valve as my feet hit the floor.
- Carry the tank toward the garage while sucking O2 like a banshee.
- Open the valve on the "mothership" T tank and grab that mouthpiece while shutting the valve on the baby tank.
- Spend 3-6 minutes remembering how bad it used to be without hyper flow O2.
- Close the valve, carry the baby tank back to my bedroom so I'm locked an loaded for the next one.
- Repeat as necessary.

Gett'n soft in my old age so I work harder to avoid agony than I used to but the lack of agony is worth it to me.

Marc

Very very interesting posts.  Can't remember where I read about the rebound headaches on 02 but will try to track it.

Now do I understand this right? Are you saying that I can go to some welder supply shop or something and just buy tanks of 02, and get the masks and stuff online from here? without needing a doctor's letter or an expensive neuro consult for a diagnosis I already have, and waiting several months to get it anyway??

Or have I missed some crucial piece of info here?

As far as I know you don't need a prescription for o2, unless you need to write it off on insurance, or Medicare. I don't know what the difference between Medical grade 02 and commercial grade,used for welding,  except the price, Maybe the threads on the tank are different, but I don't think so. You can get your mask and regulator at any medical supply store, and the tank,you can get there too, But you might be able to save a few bucks and a welding supply store. Either way you need to pay a deposit on the tank.

Happywoman wrote on Dec 20^th, 2009 at 12:51am:

Very very interesting posts.  Can't remember where I read about the rebound headaches on 02 but will try to track it. Now do I understand this right? Are you saying that I can go to some welder supply shop or something and just buy tanks of 02, and get the masks and stuff online from here? without needing a doctor's letter or an expensive neuro consult for a diagnosis I already have, and waiting several months to get it anyway?? Or have I missed some crucial piece of info here?

Yup...

Marc does something I haven't tried yet, and will breath right from the bottle with nothing else, if and when he must.

That isn't for everyone, exactly. Marc has learned to controll a bottle knob with some ability to controll the flow.

I think in the USA to get medical tanks, whether you foot the bill or some Ins does you need a doctor's script.

But in the USA anyone can go buy smaller bottles and lease large ones. No need to say any more than I want ...

Marc seems to know about tanks and regulators just for the single use of o2. I don't know about that, and as a welder I have never seen any equipment like that. So I don't know what this equipment would be for.

Maybe Marc will clue is in...

Like i said in any competent garage there will be torches.. These are used for cutting steel, welding steel, brazing, and silver soldering. This requires another gas as a fuel, which can be propane and or acetylene so far as I know. I only use acetylene.

But I make sure I don't breath even a faint bit when I am on o2 for a ch.

My problem here is wondering what o2 in a tank with no other gas is for, but Marc knows.

I can't afford doctors, the 3 hours drive, the fuel to get there the same for the way back, and just once I was diagnosed by a physician's assistant locally. I thought I had a sinus infection from hell, but with a few quick questions that gal was all over me having CH symptoms.

Being a bad boy I came up with some trex pills, a breather, injections kits on the black market.

From lesser to harsher i tried each item. I found the pills were useless. They don't act fast enough, and made me feel funky.

Oddly the breather didn't work, and I can't say why, but it did make me feel funky.

The injectors stopped a Ch Right NOW, but 6mg's almost killed so far as I am concerned, and then I rad about the Q tips. Still that stuff makes me funky, and brings on a rebound from hell.

I read and scoffed the idea o2 could work, and tried it a few times with out really meaning it. I set myself up to fail.

About the 5th time I was being crushed with an hours long kip 10, and tried o2 with more meaning and dedication, and in some long time i was able to beat that ch down, staying on o2 a long time, well over 1 hour.

Since then I find the faster I get o2 the faster I have no more ch till next time and o2 doesn't make me feel funky.

Garage men are not into asking funny questions.. They don't care about somebodies weird requests, at the same time they don't expect a law suit for helping.

Once away from o2 out riding my bike, I felt a ch coming, and went to a Fire Dept, and asked for o2, I was asked a few questions I mentioned CHead, and I was given o2 for the asking..

They planned to give me medical supplies they had on hand, but I walked by a set of torches and just moved a chair and helped myself.. They had already given me permissions. That did get some funny looks, but ya know when you have a hell pounder CH coming you really don't care much about funny looks.

Obviously I am no doctor, and I don't do things the way most people would, and haven't had some fancy pants pro tell me what is what, but I share the same things and o2 works.

I don't need a pro to tell me o2 works. And if i have something worse, then I will die from it anyway. I can't pay to save myself from any tumors.. I can't pay for brain surgery.

I have the idea if I had something worse o2 wouldn't work anyway.

I am sick of doctors anyway. I was born with phneumonia, and have forgotten more about that problem than most doctors know today. I am sick of being a guini pig to test.

In order for me to go seek out a doctor I must feel like I am on deaths door. I even fix my own broken bones and other ailments all the time.

Radical maybe, I might even die, but i am planning to die anyway, just not in any real hurry. The Democrates want me to die, and as a smoker I am doing my best to speed that up, but I fear they still have a wait on their hands.  ;D

Scott Wolter wrote on Dec 20^th, 2009 at 4:51am:

As far as I know you don't need a prescription for o2, unless you need to write it off on insurance, or Medicare. I don't know what the difference between Medical grade 02 and commercial grade,used for welding,  except the price, Maybe the threads on the tank are different, but I don't think so. You can get your mask and regulator at any medical supply store, and the tank,you can get there too, But you might be able to save a few bucks and a welding supply store. Either way you need to pay a deposit on the tank.

So far as I know the gasses are the very same.. I see both types at re-filling stations, but that has been a while, since I am so rural I exhange bottles. The lease allows me to pay for gasses inside a given bottle on the lease.

I own smaller bottles because large ones so far as i can tell are not sold. If I could buy larger bottle I would.

So I own the smaller type, and exhange them as well, so there is no point in my painting my smaller bottles to be pretty, since the new ones will be all chipped paint, and I would have to paint ever set I ever got.

So I own bottles that get exchanged. The brand new bottles were empty, and I exhanged them for full ones and paid for the gases.

About every bottle type has a different method and thread, but adapters are made to fix that. So far as I know, you can choose bottle x and have regulator Y and come up with an adapter, if the regulator and bottle threads are not a match.

Wonderfully helpful posts.  Mac, your post made me smile and smile.  Thank you.
HW

Here ya go:

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and

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Thank Marc for this.

               Potter

Living with ch isn't always easy, but it can be done. :)

I know how simple it is to say on a PF day that yeah, just live it - I do the very same. Then comes ch and when it's here, everything stops for pain management.´But that is, really, the trick: when you're in pain, you deal with the pain and when you're not, you live your life.

Find your way to do it. Find the best way to make your life possible - even with ch in it. For me, it happened, when I understood that ch will come and go when it wants to, but I don't need to put my life on hold in the meantime. Sure, I've missed something things along the way and do some things certain way (avoid alcohol, don't stay up late if I can avoid it, don't eat certain things etc.), but I'm doing it MY way and in my own time. No ch's.

Just my thoughts,
Sanna

This is a really helpful thread. Everyone is so upbeat!!
However.  My experience of CH is this:
I'm in cycle at the moment. For me this means that I am either actually having a CH or recovering from one. I never have a PF period longer than about 2 hours, during which I'm likely to be asleep!
Yesterday, for example, I was collecting my daughter from trip to movies with her friends and suddenly a CH hit while I was driving the car - safe, NOT.  As I go from 0-10 within five minutes, less usually, this was extremely hazardous to say the least. We got home safely obviously or I wouldn't be writing this, but it was the opposite of fun, driving in the dark with a raging headache and only one working eye.
So yeah.
Living your life and all that.  Great, if you can do it.
For me it's a huge achievement to be able to get through producing a meal for the family. Sometimes I can't do it. I'm proud that I've done all the Christmas shopping, gifts and food, all gifts wrapped, house decorated, house even reasonably clean too! The kids (2 living at home) are wonderfully kind and helpful but sheesh, who needs it, a mother who's reliably out of action most of the time for 2 months.  I know it's daft to feel guilty but I do. I wish I could be more fun and positive for them.
My headaches have changed in character this cycle, and instead of a great big 8 hour marathon followed by 16 hours woozy and feeble recovery before the next one, I now have bursts of 30 minute headaches followed by 20 minute reprieves which are not even close to PF, then another 30 minutes headache and blah blah blah.
There's no way I can come up with of living a productive life with this going on.  My fervent hope is that having had six weeks of this so far, I must be mid-cycle if it's anything like prior experience, so by Feb latest I may be back to what passes for normal for me (i.e. PF and loving life and quite productive in many ways)
Sorry if this is off topic or in the wrong place or whatever. Just grabbing this window before the next one hits.
CH sucks

Happywoman , Got o2?

Sandy, Yeah I get all beat up, but only when I can't get o2, or refuse to.

So far only alcoholic beverages seem to trigger me. That with either Fall or Spring.

I eat a boring diet, mostly bland rices, wheats, with fowel,fish and limited red meat. This is just the way I am, and have no wants of hot spicy, or much else.

I don't see any women other than my wife 'in season' and she isn't into make up stink.  :o

I work part time sort of, as a mechanic/tech, carpenter, you break it, I fix it, sort of guy, so I get into keroscene, parts wash, diesel, and plenty of other harsh chems, like laquer thinner, acetone, and etc etc.. None of these trigger a ch for me, but I know they do for others.

I had teeth pulled that looked great, even after x rays, and fought dentists that didn't want to, so I know what getting beat up is.

Around here I go on and on with "Get o2" because that gave me my life back, and a weapon, as I see thing to taunt and play with the beast. I wouldn't suggest others do what I do there, but I highly reccommend they get o2 asap any way they can!

Even if it is a welding tank alone, although I would prefer it be regulated.

My ch's can move around from one season or in season. They might start at dinner time in early season and be hard in the wee hours at late season.

This season, all so far are after mid night, and hit about each 2 hours apart, so I can get 3 hits.

As of late I have been awake watching tv till 2 AM and even 4 AM, so the beast doesn't get to wake me up.

I grab sleep as I can in day light, and or do what ever I must to avoid the beast, unless i want to play. Even then I can still abort at will.

This whole time begining in Oct I have used o2, and only taken beatings i was willing to take. That might have been 5, just so i don't forget, what this did to me years ago.

I can't stop it, but I sure do controll it.

get o2!

Happywoman , Got o2?

We cross posted... First of all you need a break. I have found getting a break can break a Ch into different kinds of segments.

Once you break the basic pattern there is no tellin what it will do, but it will do something different. Atleast i think so.

Now if you had o2 small enough to put in a car, all you should need to do to be safe is pull over and breath.

My hits are coming after mid-night, so I have no problems in day time, This Time...

I hope you can get o2 and break the beast once, then twice and so on. Yeah it will throw off some appointments, and it will screw up time. Then you must decide which is better, the pain and being totally un-able, or being near to PF and just late.

Oh Hell, yer a women you are expected to be late!  ;D

Mac, I hear you on the O2 ok  *grins*  and I've dutifully done reading up about it.

But there's a problem here where I live (Australia).

Firstly I was staggered by how expensive the 02 is, and all the accessories though of course you'd only buy those once.

But the actual gas canister things that you rent cost a fortune. I'm a single parent on limited income, ho hum.

In order to get them on medicare or through the health fund you need a neuro script (three month wait to see neuro plus big fat neuro fee)

and you need the doc to get special authority from govt
for you to access the therapy

the rules about 02 therapy are v. restrictive - check this quote:

•      Entitled Persons requiring oxygen for more than four hours per day at a flow rate of greater than two litres per minute will be provided with an oxygen concentrator;

•      Where flow rates of greater than four litres per minute are required, two concentrators will be considered but prior approval must be sought from DVA. In addition provision should include a regulation device; and

•      As a basic guide Entitled Persons mobilising more than three hours three times per week should be considered for an Oxygen Conserver Device.

Did you notice the 2 litres per minute proviso?  Encouraging, huh.  Just at the moment, Mac, it's all too hard. 

I don't at all doubt your rave reviews about how effective it is and all that, but the process of getting the stuff here is just - well climbing a mountain in stilettoes looks easier from where i'm standing right now.  Or rather, sitting.

CH sucks

Now there ya go building walls and thinking like a white wo/man.

You need to be clear with your self.

Are you going to go see a slew of fools who are known as doctors and pray you find the right one the first time, and so get relief, and write it off to some Insurance?

Or are you going to end the pain once and for all, for the better part?

Yeah I pay 200 USD each 4 years for 2 steel bottles leased, and one has O2 in it. I pay what ever the going rate for O2 is out of pocket, and i paid once in 1976 for a set of regulators and torches and again in the early 90s for another set of torches, with small bottles I own in theory.

No doctors, no insurance.. I paid for it.

see this   START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Yeah maybe you will buy some stuff you don't need... maybe Marc/NamVet knows where you can get a single O2 regulator. It need not be 'medical', and neither are these guys..

In case it was you, who said they can't see the side bar menu, see this, 
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and scroll down till you see green bottles. The one I use most is the far right IRON kind.. That is the kind you want for home, and you will go lease it, for 4 years, or what ever they do downunder..

tell em Mac is gonna teach you to BRAZE, and 'ee's already got the torches and the Actelene  :)

Now all this stuff might seem expensive, but there will be no waiting, and no more pain..

It is far less than a month of meds that may or not work very well, it is less than countless medical tests, and less than a few visits..

The USA has no programs... You either pay, have Ins and still PAY!

Get to a welding house... Car guys weld, boats guys weld, Hardware stores sell welding stuff. Tool warehouses sell welding stuff...

maybe harbor freight is doing buisiness in down under.

I might find out more from a Biker site I go to, as a few guys there are from downunder. I am about 1/2 the world away, but I know there is welders in down under and where there is welders there is o2..

I know this seems hard, but once you have this stuff you are going to wonder why you resisted...

My wife resisted me once, and she's hooked now  ;D

The Pirate and his floosie (not yer merry santa HO Ho Ho)

See what happens when you resist me?
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Get o2

•      """Entitled Persons requiring oxygen for more than four hours per day at a flow rate of greater than two litres per minute will be provided with an oxygen concentrator; """"""

That above won't work and isn't worth the powder to blow it to 'ELL, for us.. Not a problem any more is it?

•      Where flow rates of greater than four litres per minute are required, two concentrators will be considered but prior approval must be sought from DVA. In addition provision should include a regulation device; and

Same as above. no problem because it's no good for your use. Never worry about a device that isn't going to work for you anyway. Thar's no bloomin point......is there?

•      As a basic guide Entitled Persons mobilising more than three hours three times per week should be considered for an Oxygen Conserver Device.

Again it won't work, and what in jumpin blue blazes is that "Entitled Persons"

I never did understand socalist. GET o2, and I don't care if you need to out out red lights, bump off old geezers in the street, steal lollies from baby carriages or anything else. Get o2

Get welder's o2 since the big"they" have built a wall around something safe...

Just get it, don't do, or worry about anything else. Maybe after you can care for yourself then you can play that Entitled Persons game..

Marc/ Vet this link
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takes you to the $30.00 usd regulator at HF, but it isn't there for sale anymore alone...

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Northern has one for 89 usd...

Happywomen ,

ANYWHERE NEAR YOU IS THERE A DISCOUNT TOOL STORE?

Sometimes discount tool stores have inexpenisive welders gauges in whole sets. I am having a hard time finding 'replacement' regulators. I did in the last link.

Find a garage man and ask him about places for welding tools. Write down the store names so i can search Austrailia.

Mac.  I'm guessing you would be astonished to know how your kindness and input has affected me.  Let's just say both eyes are watering and not due to CH.   Thank you.

I will investigate garage/welder/hardware stores when the xmas lunacy subsides.

Your pirate attitude is admirable.  Also your energy is contagious.  And that's one handsome dog in the pic.

CH still sucks.

Happywoman, you are finding out what this site is all about.  Mac going out of his way to help you find what you need and a way to get it, others doing the same for still others, and on and on.  I know for newbies (not a perjorative, a description) all of this is overwhelming, esp when you connect it with a medical system that is not designed for your benefit.  (And we are trying to copy yours [smiley=bash.gif])

you will find a great number of people who will go out of their way to try to help, especially when you are showing an attitude of wanting to take control of your own situation.  It is very easy to feel overwhelmed and helpless and then to feel sorry for one's self and not get up and do something about it.  Be very careful to keep a positive attitude toward your situation as best you can.  Please don't think I'm being critical, I'm not, I'm just cautioning you of the ease of getting yourself off track.  You can do it!  Is it hard? Very often it is, but life is hard.  You CAN do it!  We'll help.

Jerry

Thank you Jerry. I do try to keep positive most of the time - it doesn't help to be glum.  And I"m aware that self-pity is one of humanity's less attractive emotions.

Also, it doesn't help!  Not one bit.

But every now and then, when the pain's been a bit relentless and I'm thinking the light at the end of the tunnel is definitely that of an oncoming train, yeah, i get glum.  I can't do Pollyanna 24/7.

This site is amazing. In 40-odd years of having CH this is the first time I've had ANY support at all from anyone, let alone total strangers.  Mac's positive rebel pirate attitude has fired me up with new determination to beat the beast.

Obviously everything's winding down here for Christmas, but when those boat builders/welders/hardware stores etc reopen after the break, this small and furious white-faced hedgehog woman will be beating a path to their door.

CH still sucks.

p.s. Jer 29.11

I have copied and paste all the info you have put on here Jerry & if i dont get the 02 script from the Prof i am seeing tomorrow (23rd dec 9am) i will get my fella to order what i need of the net or ebay etc. My fella is a keen diver now for over 30yrs and he his medical trained to help a diver who may get the bends etc. We have 100% o2 in the shed  (as well has the usual for his diving) but have the usual valve of 4-5lmp.

I will not let CH rule my life, i work, enjoy sports, socialising,travelling but when it comes to get you - you have no choice but to ride it out and let it pass. I am lucky in the fact that usually i get the worst of the pain in the early hours and only on two occasions this year has kip 8/9 got me in the day.

There is no reason or way to understand how the routine of this this thing will go - though i am trying to see a pattern but then it changes.I am used to having control over most areas of my life but this wont let me have control over it.

Regardless to the above - i am so relieved and grateful to finally know what this pain is (have had now for 24yrs - prev seasonal & misdiagnosed has chronic sinusitis & hayfever /allergies ect) because in the back of your mind at times i have thought if they cant seem to find the cause of this agony then maybe its a tumour of some sort behind my eye.

I am still waiting for the correct medications and the o2 - so far the Proff i have seen has only gave me the imigran tablets to try, which obviously are no bloody good at all.

But i know that nearly all GP's know nothing about CH or medications used to help but also most specialists also dont and this wonderful site has given me all the information i need (which i have down loaded and printed off) to take with me tomorrow when i go for my appointment.

I am lucky that i live here in the uk - that we pay just under £8 per prescription (or if you have alot of medications you can buy a pre-paid certificate and then no matter how many medications you have, you do not have to pay anymore)

All these years to get diagnosed correctly, i thought at long last i would get the help and the information i need form the dr's etc but unfortunately that is only half the battle - but i wont give up. If when i go tomorrow i get no where - i will then write to the PCT to complain (i have kept my letters to the my own gp and the proff, copies of ref from the opticians/dental ect)

I count my blessings everyday - i know how lucky i am, yes this "beast" as you call it on here can & does bring you to your knees but we just keep getting back up... again....& again & again!!!!

I will keep my fingers crossed (& toes) for you "happywoman"  that you manage to get your hands on some o2 and its works for you - i have my hopes pinned on this stuff as well

keep your chin up - steph  ::)

Mac_Muz wrote on Dec 22^nd, 2009 at 8:23pm:

Marc/ Vet this link START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE takes you to the $30.00 usd regulator at HF, but it isn't there for sale anymore alone... START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE Northern has one for 89 usd... .......................

Mac, that was just an example that was available super cheap at the time that I created that web page. At least two people on this board bought them.

If people look around, other deals can be found. In a pinch, they can spend the $90-$100 and have unlimited O2 flow.

An important point is that a welding regulator can be used on welding tanks AND "M" sized (or larger) medical tanks. 

Then, by adding a CGA-540 to CGA-870  adapter, the welding regulator can also be used on little medical tanks like the "E" size. It looks like this one that cost me $15.00:

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This makes a universal kit that will supply from tiny flow to waaaaay more than person could breathe from medical AND welding tanks.

It gives people the option of deciding how much flow they need in lieu of being stuck at some arbitrary limit.

Keep in mind that this info applies to the USA - other countries use totally different oxygen tank fittings that are not directly compatible with ours.

Marc

oh, don't start Mac the nice guy stuff. as I am a biker when I am not a pirate, or a wild native american, or anything but a nice guy... No nice guy here....  ;D

I have no idea how to search any places near you.. Thar's a pretty good reason fer that, since I live 1/2 the world away.

I want you on o2 Right Now. I want everyone here on o2 right now..

And I don't care how anyone gets it.... Poly tics and doctors may not be in anyone's best interest.. I don't give a rats a$$ about either one of those types. A CH has nothing to do with power, or anything else it is pure unadulterated pain.

Maybe if one can come by a doctor who knows something worth the knowing, that is a different story, but many doctors don't have the first clue. Not saying doctors are totally clueless, but more that this problem isn't in their list of tricks.

What I am saying is we who share CH probably know how best to deal with ch, and the safest way is o2.

Since it isn't likely that anyone is going to fall asleep at KIP 10 then there is no danger of breathing too much o2.

The only real danger as I see things is FIRES... You take the slightest fire and add o2 and you get a real bad fire.

Since o2 can soak into things like long hair, clothing, bed clothing, and the like you must be sure no fires will get started,

O2 in a room heated with gas heaters, kerosene heaters, oil lamps and the like is a sin. So is lighting up a ciggy butt, and or going onto a basement/cellar where there is a gas water heater.

Or any other place with fire. Still some how at a kip 10 I don't see anyone setting up the barbi for ribs..

I KNOW what ch is... I know if you can break it once it will change.. The change won't exactly be welcome, but the break will be.

Once you get that break, and discover what the change is, you can learn to move with it, and so change the Dance.

Most people think of the dance as the odd things they do in a bad ch. I do, but I also see the dance as ways you move life to avoid and abort the ch.

A part of my dance is to move my life habits, so I either don't get hit, or take hits when I am mad enough..

I KNOW all anyone needs is 1/2 a welding kits, unless they also want to weld and braze.

I just don't care about what is and what isn't legal. Not when it comes to CH anyway. It isn't like steraling a car, or robbing a bank. You are not doing anything to anyone but you.

And all you are doing to you with o2 is killing some very real pain. o2 won't make you crazy, or even cause any after effects..

Well with in 30 minutes you will be nearly as good as you ever were, and then be able to function.

I KNOW that even though I dwell very rural, that with in 1 hours drive in any direction I can get a lease and a bottle of o2. I KNOW that with in that same distance I can find 3 discount tool supply houses for lesser expensive oxy actelene set up, and closer I can get sets at auto part stores..

The work comes in finding a single regulator with atleast 6 feet of single hose for me. So the costs are reduced for exactly what is needed.

Not much sence in getting another reg or bottle for welding if you don't plan to weld angel winds like Tom Hanks found in the Castaway.

On the other hand, so what if you get torch tips, a red line made to the green line and just don't use it....

I have no mask, but Marc clued me in to the mask isn't always used by ch'ers anyway and the kit from here also comes with a mouth piece. Evidently the mask can hurt someone with a raw jaw..

Maybe I would gain bennies myself if I went and bought a swimming snorkel, and stuffed it on my torch grip.

Then I could bite down breath in and let go to breath out. Might improve the quailty of o2 and it sure would be warmer that what ever below 0 it happens to be in winter...

Last night I was frustrated and so thinking in text... When I do that the sentances come out the way my mind works, sort of scattered..

I got hurt real bad back in 87, and ever since find alternate ways to get what I need.. When I need a part I thing about that part, then I think about what else looks like that part.

Then I go find the freest thing I can to make what ever I need a done deal.

There is no way around a big tank of o2. A regulator is a real good idea, but can be done with out.. Going with out means there is a risl of blowing o2 at 2,000 psi into your lungs Right Now, and I that would kill. Still it can be done.

Maybe next most primitive would be to slam clear tubing on the tank threads.. That gets you a distance and will lower psi somewhat.. Then you could tie a big thicker than a trash bag to the hose, and add another tubing to that bag. Then the bag would fill up and you could see it. Breathing off the bag with some psi still blowing in your face..

I can dream up all sorts of things from that point and so far the costs are the lease, and some hardware store tubings..

The thing is, this way is wastefull.

My torches have apx 60 feet of line so I can cut steel away from the wooden barn, with less chance to burn the barn down.

I don't waste a bit of the o2. It6 runs out of the tank thru a regulator, thru that 60 feet of lines, to the grip. The grip has a knob I open and close as i breath.

After my walk to test the ch level, I return to the barn and breath more 'just to be sure'. Then I close the tank off, and breath the last in the 60 feet of hose....

45 psi is about the same feeling as on riding my Kawii Nomad at 85 mph.... maybe a little less.

So 'we' want lots of flow that won't blow us up.

Marc, yeah I got the idea... The regulator price has changed like every single other thing.

'We' could make these part assemblies up, but then they may not work over the world and shipping is killer..

Of you live in Crimey's! Downunder it is best to find out what type of fittings are used there..

I know if it were me I would go to a car parts store, and a hardware store and look at what ever they have, note the prices, and then find tool discount stores and see the same things.

I  would buy what ever was the lesser in dollars, pounds, sterlings, yen, deutchmarks, or chocolate, and then take the rig to a place that has 02.. Make sure the fittings fit, and then buy or lease the tank ....for brazing..

I would say brazing, since a salesman is likely to want to sell a welder, a mig, tig or arc welder... none of which use o2.

A o2 regulator is a fancy little device.. I blew mine up in too uch cold once, and no one would rebuild it... I didn't have $$$ and so i rebuilt it myself and that was back in 1990, and it still works right.

There is a rubber diaphram inside the reg, about the size of a silver dollar or a 1 troy ounce silver ingot round..

I managed to blow that thru a 1/4"/6mm hole. I fixed it with a similar size hunk of dead car tire inner tube..

Like I said, I don't go with out needs much...