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New From CA (Read 12280 times)
Jack
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New From CA
Sep 14th, 2010 at 7:28am
 
My name is Jack, and I've been suffering with clusters since I was at least a teenager, if not earlier.

I was born and raised in SoCal. I'm 39 now, and have just hit another cycle after having been pain free for about two years. Happy (sorry) I found this place...

For what it's worth, I'm a welder/machinist/fabricator/mechanic.
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wimsey1
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Re: New From CA
Reply #1 - Sep 14th, 2010 at 7:52am
 
Hey there, and welcome! As a welder you'll doubtless have access to your new best friend, O2. Read the link on the left about using O2. And if you have any questions about what type of regulator to use, just ask. Batch, or someone else, will know. Lots of other interventions available, too. Read and read some more. Good luck and God bless! lance
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Jack
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Re: New From CA
Reply #2 - Sep 14th, 2010 at 8:46am
 
Thanks!! Yep, I have access to oxygen. In fact, I have a huge cylinder of it at work, and another at home. I am actually curious, if anyone knows, if there is a difference between oxygen used for welding and oxygen used for medical/medicinal purposes.

The only way for me to currently get at the oxygen I have at home (for relief purposes) is to shove my welding torch in my mouth, acetylene off, of course...

Forgot to mention that I've had really good luck with Imitrex injections, but needless to say, they're damned expensive. I haven't had health insurance in years, so I've been paying out of pocket for doctors and prescriptions when I've needed them. This cycle, which started about two weeks ago, has been very mild in comparison to the last one. I used the last of my Imitrex about a week ago, and have just been suffering through since then.
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« Last Edit: Sep 14th, 2010 at 8:49am by Jack »  
 
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Agostino Leyre
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Re: New From CA
Reply #3 - Sep 14th, 2010 at 9:19am
 
Jack wrote on Sep 14th, 2010 at 8:46am:
Thanks!! Yep, I have access to oxygen. In fact, I have a huge cylinder of it at work, and another at home. I am actually curious, if anyone knows, if there is a difference between oxygen used for welding and oxygen used for medical/medicinal purposes.

Yes, the medical tanks are cleaner on the outside.
Jack wrote on Sep 14th, 2010 at 8:46am:
The only way for me to currently get at the oxygen I have at home (for relief purposes) is to shove my welding torch in my mouth, acetylene off, of course...


You can buy good masks from the CH.com store, third yellow clicky thing on the left.
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Triptans cause increased number of hits and increased intensity.  Learn it, believe it, live it.  I use triptans as the absolute LAST RESORT when treating my CH.&&
 
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bejeeber
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Re: New From CA
Reply #4 - Sep 14th, 2010 at 11:45am
 
Hi Jack,

What Agostino and wimsey said.

Lotsa people 'round here use welder's O2 with a high LPM regulator and non rebreather mask as outlined in the oxygen info link to the left of this page.

PLUS here's a critical bit of info on how to get 2 to 3 times as many aborts from your imitrex injections: Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register

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CH according to Bejeeber:

Strictly relying on doctors for CH treatment is often a prescription that will keep you in a whole lot of PAIN. Doctors are WAY behind in many respects, and they are usually completely unaware of the benefits of high flow 100% O2.

There are lots of effective treatments documented at this site. Take matters into your own hands, learn as much as you can here and at clusterbusters.com, put it into practice, then tell this CH beast Jeebs said hello right before you bash him so hard with a swift uppercut knockout punch that his stupid horns go flinging right off.
bejeeber bejeeber Enter your address line 1 here  
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Guiseppi
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Re: New From CA
Reply #5 - Sep 14th, 2010 at 11:46am
 
Welcome to the board! 32 year sufferer here and 02 has all but eliminated my imitrex use. As Thomas said, the only difference in the 02 is the tanks themselves...many on the board use welding 02. Read the info, set yourself up with a mask and relief will be about 5 minutes of huffing 02 away!!

JOe
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Batch
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Re: New From CA
Reply #6 - Sep 14th, 2010 at 6:28pm
 
Hey Jack,

Welcome aboard.  You've got the makings for a great oxygen therapy kit with a welder's O2 cylinder and regulator already at home. 

All you really need now is a reservoir bag and mouthpiece.  You can make one easily for less than a couple dollars.  I've made several of these using the following instructions and they work great!

A half inch PVC pipe union/coupler makes a perfectly functional mouthpiece.  You should be able to pick one up at Lowes or Home Depot for less than 50 cents.  After that all you need is a clean 40 gallon plastic trash bag, some electrician's tape and some duck tape.

Cut a small corner off the closed end of the trash bag a little less than a half inch in length and force the PVC coupler half way through the hole and seal with a wrap of electrician's tape.

Then fold over the open end of the trash bag a couple times and seal with duck tape for an air tight seal.

If you want to get fancy, get 6 feet of oxygen tubing and barb fitting shown below.  The barb fitting will attach to the oxygen hose fitting on the regulator.  Push the oxygen tubing onto the barb fitting and tape the other end of the tubing through a hole in the reservoir bag with electrician's tape to hold in place.
 
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If you don't want to get that fancy, all you you need to do is cut a half inch tip off the closed end of the trash bag opposite the mouthpiece, slip it over the oxygen hose fitting on the regulator and rubber band it in place.

Once you've everything attached, open the regulator's cylinder supply valve then open the regulator valve to inflate the trash bag reservoir.  When the trash bag reservoir is fully inflated, close the supply valve and start sucking oxygen through the mouthpiece.

You may need to refill the reservoir bag another time or two but you'll find there's no restriction on inhalation.  There's no exhalation valve so you'll need to exhale away from the mouthpiece.  Exhaling back into the bag is bad...  That will cause you to re-inhale exhaled breath high in CO2 and that can make an abort with oxygen therapy impossible.

The best technique is to exhale as fully as possible away from the mouthpiece, then inhale as deeply as possible through the mouthpiece and repeat as rapidly as you can.

If you start at a respiration rate of 20 and a tidal volume of 3 liters inhaled oxygen with each breath, you'll be sucking it down at an effective flow rate of 60 liters/minute.  Keep this up for one minute if possible.

After a minute at a respiration rate of 20, slow the respiration rate to 15 breaths a minute with the same 3 liter tidal volume and continue at that rate until the abort.  That should work out close to a flow rate of 45 liters/minute.

Take care and keep us posted.

V/R, Batch

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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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Jack
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Re: New From CA
Reply #7 - Sep 14th, 2010 at 7:36pm
 
Holy crap, Batch, that's some detailed information!! I'll get on that soon, and will let y'all know how it works out. (Had two attacks last night, got up at 2:30 or so this morning [I usually get up at 4:00], and had another attack at work at about 10:00. WAY too tired to get everything together right this second...)

Thanks so much!!

Looking forward to reading more of the forum for now.
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Chad
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Re: New From CA
Reply #8 - Sep 15th, 2010 at 11:54am
 
Welcome Jack!

As Batch said, you're all set.  You just need the non-rebreather mask which has a bag on it.
See CH.com store.

One other note, you may find it easier to use the mouthpiece rather than the mask.

All the best!

Chad
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When the PAIN starts, I FIGHT back!

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Jack
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Re: New From CA
Reply #9 - Sep 16th, 2010 at 11:33pm
 
Of course, right after I posted on Tuesday evening, I had an attack and was completely away from my computer until this evening. Missed work yesterday and today.

Feeling OK (relatively PF) at the moment, and am getting ready for bed. Hope I can stay there tonight.

Meant to say thanks for all the welcomes and all the encouragement. So, THANKS!!!  Smiley
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« Last Edit: Sep 16th, 2010 at 11:34pm by Jack »  
 
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Re: New From CA
Reply #10 - Sep 17th, 2010 at 7:40am
 
Smiley Jack and Welcome!

Lucky you...being a Welder I mean  Wink  You already have O2 now just to rig your set up for CH hits!  Batch is a wonder with info regarding that heed his great advice and give the CH beast the A$$ kicking he deserves!

Sending PF Vibes your way!
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Jack
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Re: New From CA
Reply #11 - Sep 18th, 2010 at 1:16pm
 
Thanks, Ginger. PF vibes must be working, as I just slept through the night again. Only two nights in a row, but as we all know, even getting through one night while in cycle can seem miraculous.
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Re: New From CA
Reply #12 - Sep 30th, 2010 at 9:53pm
 
Hi Jack,

      Industrial verses Medical. I use to work for a large Industrial gas an welding supply company, I won’t mention the name as I don’t think they would appreciate me broadcasting what I am about to tell you. Here is what I know. At there filling plants they only have one storage tank for O2 it is 100 percent pure oxygen, they use this to fill both medical and Industrial oxygen tanks this way they can certify medical and do not require a second system for Industrial. It just costs less. It’s the same gas. It’s the same for balloon helium and industrial helium, balloon grade costs less. All there gas is pure, no matter what type CO2, Argon ect, this way they don’t need 2 systems for filling. A lot of restaurants are smart to this; they use Industrial CO2 instead of food grade because it’s cheaper.

Good Luck
Bud
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The Beast takes advantage of us when we are vulnerable, picks on the unprepared. But when you fight back, he runs away with his tail between his legs. He truly is a coward.
 
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Jack
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Re: New From CA
Reply #13 - Oct 1st, 2010 at 7:28pm
 
Thanks, Bud!!
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Linda_Howell
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Re: New From CA
Reply #14 - Oct 1st, 2010 at 8:35pm
 
Hi Jack,


Not more that I can add to the 0xygen question that hasn't already been said except that I am so/cal born and raised too. (Burbank) Well... until I got sick of the parking lot that they call I-5, 210, 405 etc. & moved to Kentucky a year ago.

Besides 02 as an abortive,  are you on a preventative?   Lithium, Verapamil/Topomax... anything?

Linda

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Jack
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Re: New From CA
Reply #15 - Oct 2nd, 2010 at 9:38am
 
Hi Linda!! I'm all too familiar with Burbank, as most of my friends live there and in the other cities of the SFV. I have a couple of friends that live a bit closer to me, but most of my free time out of the house is spent "on the other side of the hill".

Haha!! Yeah, the traffic here is horrendous, though it's not much of an issue for me because I ride a motorcycle everywhere, and splitting lanes isn't illegal yet. (Hopefully, it never will be.)

No preventatives at all. No insurance, and I can't really afford to visit a doctor. (I got strep a few months ago, and the $145 office visit and penicillin injection left me very strapped for several days.) I have a friend who's married to a surgeon, so when I could afford Imitrex, I would just have my friend's wife call in a prescription for it.

After reading so many stories here, I realized two things: 1) I'm not alone in being misdiagnosed, and 2) I'm a big whiner.

When I was a kid and had health insurance through either my mom's work, or as a young adult through my own jobs, I'd take full advantage. I've had all kinds of tests performed, from blood to urine and feces, all the way up to spinal taps, MRIs, CT scans, etc., and obviously, they all came out negative. I was put on cafergot for a while in the early '90s, but it didn't do much of anything at all. When Imitrex was introduced, I thought I was in heaven because of the almost instant relief. I was also on Prozac for about five years in the late '90s, and experienced the longest remission period ever up to that point, which was about a year.

The reason I say I'm a whiner is because some of you poor devils have these things on a daily basis without any relief. My cycle is waning, and I've slept through five of the last six nights. (I got hit the night before last, after an evening out and taking myself out of a fairly rigid sleep schedule. Red Bull handled most of that one.) What I'm getting at is that my attacks have been fairly mild the last few cycles, with a definite peak somewhere in the middle. I guess reading about some of these has brought back a lot of memories of living in seemingly constant pain, and definitely living in constant fear of getting an attack anywhere at any time.

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Bud
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Re: New From CA
Reply #16 - Oct 2nd, 2010 at 10:16am
 
Hi Jack,

I am the opposite, have only ever had a prevent, Lithium.
Did not even know about abortive measures until now.

There going to make life easier for us here my man,
Read listen and learn,
Bud
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The Beast takes advantage of us when we are vulnerable, picks on the unprepared. But when you fight back, he runs away with his tail between his legs. He truly is a coward.
 
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Jack
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Re: New From CA
Reply #17 - Oct 2nd, 2010 at 12:18pm
 
Bud, I couldn't agree more. Take care!!
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Jack
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Re: New From CA
Reply #18 - Nov 21st, 2013 at 5:04pm
 
Well, after three years and change of remission, I'm back.
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Re: New From CA
Reply #19 - Nov 21st, 2013 at 6:31pm
 
Ouch...the longer the remission, the m ore it stings when it come back. Cry The newest thing around here, worth looking at:

Follow this link to the medications section of this board and read the post 

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It’s a vitamin/mineral/fish oil supplement, all over the counter stuff. It’s up to an 81% success rate of those who try it and respond to the survey so you’re just shooting yourself in the foot if you don’t give it a shot. I’m 3 years pain free on it after a 35 plus year track record with episodic CH. Best of all, it’s healthy for you even without CH!

As of January 20, 2013, the compiled raw data indicates an efficacy of 80%. 240 out of the 300 CH'ers who have started this regimen and stayed on it for a month or more have experienced a significant reduction in the frequency and severity of their CH... 78% of the 300 CH'ers experienced a pain free response and 60% of the 300 have remained essentially pain free. Episodic and chronic CH'ers respond to this regimen at roughly the same rate.

Preliminary survey results indicate most of these CH'ers were pain free before the end of the third week with some responding in a little as 12 to 24 hours. The average time to respond is five days


Joe
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Re: New From CA
Reply #20 - Nov 21st, 2013 at 6:44pm
 
Welcome back Jack  (wow, that sounded like a song).

I am a newbe on the forum, and like you I have several years between cycles.
Just wanted to tell you that my cycle started about 6 weeks ago, and after 3 weeks and a little finetuning, I got totally PF.
So take Joe's advice, it is really worth a try.

PF days to you  Smiley
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D3 rocks !!!
 
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Jack
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Re: New From CA
Reply #21 - Nov 21st, 2013 at 8:38pm
 
Thanks For the kind welcome back!! I went to my doctor this afternoon and got a prescription for Imitrex, which has always worked well in the past. While I was waiting for it to be filled, I gathered the vitamins/fish oil/mineral cocktail's ingredients, and just took my first dose. We'll see what happens!!

I still have plenty of Red Bull around, and now I have two doses of Imitrex to back me up.
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Re: New From CA
Reply #22 - Nov 21st, 2013 at 10:09pm
 
Hi Jack,
Sorry to read that  Smiley has returned. But with
the Vitamin D3 Regime it should soon be knocked on the head. With the vitamin regime, it's best to take them
with your main meal of the day for the best outcome. Also
it can take from 2-3 days...to 2-3 weeks to work so don't
give up. After one month on the regime you need to get a
25 (OH) D blood test to check your Serum Concentration.
It needs to be around 80ng/ml to be in the green zone.

Cheers, Hoppy.
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« Last Edit: Nov 21st, 2013 at 10:15pm by Hoppy »  
 
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Jack
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Re: New From CA
Reply #23 - Nov 23rd, 2013 at 8:50am
 
OK, not concrete scientific proof or anything, and more than likely just this cycle waning, but since I started the AF cocktail on Thursday evening, all I've had is shadowing. Not mild shadowing, but still, it IS better than a full hit. Managed to sleep through the past two nights, which certainly makes my wife happy.
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Re: New From CA
Reply #24 - Nov 23rd, 2013 at 9:33am
 
AF cocktail? Is that the D-3 or the pred?

Joe
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