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.

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

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.

Jack wrote on Sep 14^th, 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 14^th, 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.

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

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

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

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

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.

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

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=hiya.gif] Jack and Welcome!

Lucky you...being a Welder I mean  ;)  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!

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.

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

Thanks, Bud!!

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

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.

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

Bud, I couldn't agree more. Take care!!

Well, after three years and change of remission, I'm back.

Ouch...the longer the remission, the m ore it stings when it come back. :'( 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

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  :)

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.

Hi Jack,
Sorry to read that  [smiley=evil.gif] 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.

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.

AF cocktail? Is that the D-3 or the pred?

Joe

D3. Should have written AI, for Anti Inflammatory...

Gotcha, that's great news, hoping it's the beginning of a LLLOOONNG break. And I hear you with the wifey, you can only be so quiet at 2:00 am when beasty visits. ::)

Joe

Guiseppi, you're not kidding!! She's a migraine sufferer, so she has a bit of an idea of what's going on.

OK, so I started the anti-inflammatory regimen on Thursday night, and aside from some very mild shadowing, I have not had an attack since Thursday morning. Anecdotal evidence? Absolutely. Is it working? No idea if I'm waning or if it's the vitamins, but either way, I'll take it.

For what it's worth, I tried taking my wife's Maxalt during a couple of attacks last week to see what would happen, and it was totally useless on my headaches. The first night it made me a little nauseous, and the second night it just left a bad taste in my mouth.

On a side note, I quit smoking almost two years ago, and now I "vape" only. I have a feeling that not having all the chemicals contained in cigarette smoke in me has probably made a huge difference in my clusters.

Actually for many it works that fast. 3.5 years of taking it religiously, I don't ever intend to stop it!

Joe

Well, for the past two nights, I've had attacks. Red Bull has stopped working, and I've used both Imitrex injections. Insurance won't cover more for a month (WTF?), so I'll be paying out of pocket for another pair of shots tonight. Still taking the supplements.

I think the thing I hate most about these damnable headaches is how unpredictably predictable they are.

Hey Jack,

Have you tried the accelerated vitamin D3 dosing schedule?  It's one of the fastest ways of elevating your 25(OH)D serum concentration into the therapeutic range of 60 to 110 ng/mL where nearly all CH'ers, episodic and chronic, experience a favorable response to this regimen...

Take care and please keep us posted.

V/R, Batch

Batch,

No, I haven't tried the accelerated D3 dosing, but I'll certainly look into it. Thanks for the tip!!

Maxalt seems to be working, but only if it's not taken as an emergency abortive. In the middle of the night, Imitrex is still king. During the day, if I realize that I'm getting an attack, I can take a Maxalt and it's been working OK.

Spent most of Saturday and all of Sunday in bed. At 8:00 Sunday night, all of my head pain stopped. Made it through the last two nights with no problems at all. Yesterday was also pain free, but I did feel exhausted most of the day. So far so good today...

Hey Jack,

Thanks for the update...  Great news!  Using a little hindsight... was this cessation of CH symptoms associated with end of cycle... or the vitamin D3 regimen?

Take care,

V/R, Batch

Batch, I have no idea. Got an attack last night just as I was drifting off to sleep. Not terrible, and slow moving enough that I debated for a few minutes as to whether or not I should use the last Imitrex injection I had on hand. (I went ahead and used it.)

The night before last, I woke up at one point with a bit of pain, but went right back to sleep. Honestly, I'm still trying to figure out if it was just a dream...

It's now Tuesday morning, and I haven't had an attack or any significant pain since Saturday. Go figure.

Kiss that cycle good bye Jack! Hope it's a lifetime remission.

Joe

Thanks, Joe!! Same here. I think I'm going to try to use this thread as a headache diary.

It's now been several weeks, and no pain at all since the last time I wrote.

Always great to hear Jack! [smiley=thumbsup.gif]

Hi Jack,
Hoping your on your way, to a CH free life.

Hoppy.

Hi Jack.
If your insurance will only cover a limited number of injections per month, stockpile a few while you are in remission, to help you through the next time. But hopefully the D3 will prevent next time happening.
Hope your remission lasts for ever.
Maz.

Change your profession, the fumes from your every day work life is causing the cycles.

Welcome to the board michen, if only it were that simple! :D The actual cause of CH is still a bit of a medical mystery with most research centering on our hypo-thalamus. Avoiding triggers will reduce the number of attacks but will not prevent CH. My triggers are alcohol, sleep deprivation or dramatic changes in sleep cycle, and sustained stress. If I religiously avoid these triggers when I'm on cycle, I'll reduce the total number of attacks, but won't stop my CH. Off cycle NOTHING triggers an attack!

Glad you checked in on the board, Bob has given you some excellent advice in response to your first post. You'll find your greatest weapon against the beast is knowledge and there's a boatload of that here. Welcome to the board.

Joe

mmcmichen wrote on Jan 6^th, 2014 at 10:04am:

Change your profession, the fumes from your every day work life is causing the cycles.

Yeah, what Joe said, and what I said in my previous post to your intro. Again, fumes can be bad, fumes can trigger, but they ain't the cause. blessings. lance

I totally agree with wimsey and Joe. Sure, when I'm in cycle, the fumes from welding and the fumes from the lubricants I use daily while machining can certainly be triggers. But what caused them, then, before I began welding and machining? I'm 43 now, and have been in my profession since I was in my 20s. I've had clusters at least since my early teens, if not earlier.

Anyway, still no pain. Back to work today after having been off since December 20.

Thanks, Hoppy!! I hope so, too. And maz, that's the plan.  :)

Another "yay me!" post. Still PF.

And... Still PF.

[smiley=shore.gif] Doin the happy dance for ya Jack!

Thanks Joe. Stress apparently isn't a factor when it comes to being out of cycle with clusters. I know this because my mom passed away about a month ago, and while I have been extremely stressed (and sad, and scared, and heartbroken), I haven't had any clusters at all since this last cycle ended.

Still PF.

The past few days, I've been having some very mild migraine-like shadowing. Other than that, PF.

Hey Jack,

How much vitamin D3 and magnesium are you taking?  Have you had the lab test for 25(OH)D?

Take care,

V/R, Batch

Hi Batch,

  I stopped taking it shortly after I started. It seemed to be making things a bit worse. The same thing happened to me with melatonin...

Hey Jack,

Understand...  When you're well out of cycle and still pain free, you might want to get the lab test for 25(OH)D.  If it's below 30 ng/mL, you may want to restart the anti-inflammatory regimen.

Take care,

V/R, Batch

Thanks Batch, I'll give it a shot.

Still PF. I'm gonna give Batch's recommendation a try, starting in the next couple of days. I might also try using melatonin at night for sleep to see if it makes any difference in whether or not I get the hangover the next day, now that I can safely say that I'm out of cycle.

Still PF, but still highly stressed with my mom's estate. Apparently, stress is not a factor in clusters with me, at least when I'm out of cycle.

Still PF.

Welcome! It's awesome that you're getting everything worked out. Hope it sticks.
Melatonin works somewhat for me, though I feel foggy for the next half day or more.

Hi Sean,
How much Melatonin do you take before going to bed ?
when in a cycle I would take 10mg one hour before
bed and never felt groggy in the morning.

Hoppy.

Hoppy, 10mg was/is sometimes my regiment. I tried stepping it down to 5mg for a few cycles and the benefit decreased drastically while the grogginess only decreased to a small degree.

Mine is a complex case and I am in no way stereotypical. For some reason, artificial changes in my melatonin or serotonin levels effect me drastically.

Hi Sean,
Timing of taking Melatonin is quite important. Taking it
about 2hrs before bed at the same time every night leaves
you less groggy in the morning. You can clear up the
grogginess quite quickly by getting out into bright daylight
which encourages the conversion of Melatonin into
serotonin and other closely related compounds.

Good Luck, Hoppy.