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        Cluster Headache Help and Support >> Getting to Know Ya >> yet another noobie - O2 advice needed
        
(Message started by: VALIS on Mar 10^th, 2008, 12:02am)

Title: yet another noobie - O2 advice needed
Post by VALIS on Mar 10^th, 2008, 12:02am

Hi Y'all

Well gosh, I am so happy to have found all of you - this sure seems like a fun little place to hang out! Seriously though, I am so grateful to all of you for coming together and creating this vital community. Without it I would be one scared little puppy right now.

So, I'm a 41 year old guy and here's my story in a nutshell :

Had my first real run-in with the beast about two years ago. Pretty short-lived by all accounts as it only ran about 10 days. I was only having one major bout every other night (shortly after going asleep) Consistently Kip 9/10 and lasting for about 3 hours. Of course I didn't know what was going on, why I was willing to do ANYTHING to stop the pain and why I was most comfortable when I had my face pressed up against an electric fire, singeing my hair. LOL - Not! My cycle subsided and I basically wrote it of as being related to my teeth or my neck injury from a car crash (I knew deep down that neither were responsible but was too scared to contemplate anything else).

Fast forward to today - my current (and 2nd) bout started about two weeks ago. Got slammed by a Kip 8 about 6pm that lasted for about 2 hours - finally got sleep, exhausted. Woke up about 2 am with a Kip 9 that escalated to a 10 and lasted for about 3+ hours. This has been my cycle: Kip 3/4 all day every day. Every second day or third day I get a Kip 7/8 in the evening, eventually get to sleep and wake up to our little friend who is in a VERY bad mood (Kip 9/10) and proceeds to wreak havoc for 3+ hours - all of this with no abortives (thanks to all of you I am now better armed for when the next one strikes). Oh, HOT showers for an hour is the only thing I've been able to do so far.

So, I don't have health insurance (don't ask) and really don't want to go down the traditional meds path if I can help it. (sounds just as scary as the beast in many cases). Thanks to all of the incredible info on this site here is my plan of attack/defense:

As of today I am committed to going down the clusterbusters path and have already taken steps to procure the necessary ingredients. Obviously I will let you all know the outcome.

Strong coffee in the fridge - lots of it.
Strong ginger tea
controlled breathing (doesn't sond easy when ou're going through it)
Hot compresses/showers (cold makes it worse).

I am also going to get an O2 setup this week. It will be welders O2 as I don't have insurance. I have gone through so much info for the past 24 hours but have yet to come up with a one stop shop that lists in detail what you need and how much it will all cost. Things I need to know:

How big a tank do I need and how much does it cost (both for the initial welders tank and refills)?

What regulator should I buy (I know one that delivers up to 15lpm) - a make, model, where to buy it online and approx price would be amazing. Are there a lot of different connector options for O2 tanks?

What is up with Clustermasx? They have virtually no info on their site and the email I just sent them bounced back?

What is the second best option for a NRB mask?

Anything else I should know?

Many Thanks!!!

Sending you all PF wishes!

~sean,

Title: Re: yet another noobie - O2 advice needed
Post by AussieBrian on Mar 10^th, 2008, 2:49am

G'day, Valis, and welcome. Sorry you you had to come looking but here we are. Large as life and twice as ugly, which counts for everyone here except me. (I'm the sane one who can be trusted impeccably.)

First and foremost is a positive diagnosis by a qualified professional. We're not doctors here, though we're expert patients, and there's many headache types that can mimic this rotten condition but still be different and other (perhaps more serious) matters must first be ruled out.

Ask the questions, Val, we'll happily keep answering them and welcome to your new, just slightly parallel, universe.

Title: Re: yet another noobie - O2 advice needed
Post by kevmd on Mar 10^th, 2008, 9:41am

sean....I'll answer 1 quick question as I have to get some work done. I am doing the welding 02 as well. My first purchase for their largest tank filled with 02 was about $160. It costs about $24 to refill. You pretty much just go and exchange the tank you bought for one that is filled. You own the tank after the 1st purchase. ITs a 504 regulator I believe that you get for about $40 on ebay. And any non rebreather mask should do the trick. Others may have better info on the clustermasx and are much more knwoledgeable about o2 than myself
good luck

Title: Re: yet another noobie - O2 advice needed
Post by George_J on Mar 10^th, 2008, 10:41am

Quote:

Anything else I should know?

Good morning, Sean.

Phillip K. Dick reference in your screen name, eh? Very nice. ;)

A couple of things you might look into--melatonin seems to work well for a certain percentage of us to reduce the number of nighttime hits. The usual effective dose seems to be in the neighborhood of 6-12 mg, taken about an hour before bedtime.

You might also look into the use of magnesium supplements coupled with calcium--my daily regimen includes 250 mg. magnesium and 1000 mg. calcium. (Calcium apparently mitigates some of the unpleasant digestive effects of magnesium supplementation. )

http://www.med-owl.com/clusterheadaches/tiki-index.php?page=Magnesium

The use of melatonin and magnesium is directed at reducing the number of hits that a person gets during a cycle--so far, I can say that for me, at least, the melatonin clearly reduces the number of times that I get hit at night during a cycle. Since I only began taking magnesium after my last cycle, the jury is still out on that. As of now, I can say that it seems to do no obvious harm.

It's a pleasure to meet you--hope this cycle is short and mild for you.

Best wishes,

George

Title: Re: yet another noobie - O2 advice needed
Post by PollyPocket on Mar 10^th, 2008, 6:39pm

Hi Sean and welcome to the nuthouse. I'm a 23 yr sufferer, but this was my first year using o2. Gotta tell ya- what a life-changing difference it made for me. The key for me was to start the o2 the very second I felt the first twinge (subborn me took a long time learning that!) and it knocked the beast back within 10 mins.

I never tried the melatonin so can't speak for its efficacy, but many on here swear by it as helping those nasty nightly wallops.

Definitely keep a diary of your headaches. Frequency, duration, level and what you've tried to help reduce the severity. Take that with you when you go to the doc (I've been thru several cycles without insurance; I understand what you're dealing with) and get a proper diagnosis. The diary will help your doc in that.

You'll soon learn that you can manage this and get on with the business of life.

Wishing you pf time :)

Title: Re: yet another noobie - O2 advice needed
Post by VALIS on Mar 10^th, 2008, 7:33pm

Thank you all for the support and information! :D

kevmd - knowing the price of O2 and type of regulator really helps!

AussieBrian - I appreciate your encouraging me to look for a qualified diagnosis - I will be going to the doctor as soon as I can. In the meantime I will just have to deal...

George_J - I will definitely look at adding melatonin, calcium and magnesium to my daily regimen! And yes, PKD is one of my top favs. He sure went through his own kind of nightmare with pain yet he managed to channel it in such brilliant ways. Inspirational.

PollyPocket - Hope to have 02 on hand soon and will be sure to hit it at the first twinge when I do. I will also start keeping a diary as of today. Should make for fun reading for future generations ;)

Right now I'm dealing with a 4 verging on 5 which feels like it might be building to one of my early evening visits. The only thing I have on hand is coffee so I'm slamming back as much as I can. Here's hoping...

Thanks again to you all!

Title: Re: yet another noobie - O2 advice needed
Post by Superdave on Mar 10^th, 2008, 8:57pm

Hi Sean, Welcome to the world of clusterheadaches.com we're happy you found your way here so soon. It has taken me 5 1/2 years to find this very helpful place.

You won't have any luck with the clustermask web site, but you can cheaply and quickly assemble your own.
Here is a link to the parts list you’ll need. there are 2 different companies to order to order what you need first one is;
Moore Medical 1-800-234-1464 for mask, tubing, humidifier

The other is Sea Long, If you call Michelle she already knows what you need if you tell her you are a cluster head.
Michelle Fleig
Operations Manager
Sea-Long Medical Systems, Inc.
Ph: 502-969-4949 x230
Fx: 502-969-0494
Web: "http://www.sea-long.com"

All the info you need is available @
http://www.mushys.com/O2/mymask.html

Good Luck and Don’t forget to try the Redbull and if you get melatonin try to get the capsules

Title: Re: yet another noobie - O2 advice needed
Post by Jonny on Mar 10^th, 2008, 9:26pm

on 03/10/08 at 19:33:23, VALIS wrote:

kevmd - knowing the price of O2 and type of regulator really helps!

What you want is a CGA-540 regulator, that is the description of the connection.....anything else will not do.

They are fairly cheap ($25) on ebay.

Whatever you do dont tell the dudes at the welding supply joint that you will be breathing it, theres a law against them selling it for that!

Title: Re: yet another noobie - O2 advice needed
Post by BarbaraD on Mar 11^th, 2008, 8:48am

Also, get some Red Bull -- keep that in the fridge also - chug-a-lug a can of that at the onset of a CH. It helps some of us if you get to it soon enough.

And the Melatonin - I use 12-15mg at night to avoid the night hits.

O2 is a given... Red Bull - O2 at the FIRST sign....

Charlie should be along soon with his circulation technique. It works for a lot of folks.

Hugs BD