Hi everyone,
    My name is Steve and I've suffered from episodic CH for 17 years now.  I've been lucky in that I only get a cluster period once a year (fingers crossed) for about a month or 6 weeks. My story is nothing you haven't heard before:  Misidagnosed for years by ignorant/arrogant doctors (told I had sinus infections, tension headaches, histamine headaches, allergies etc..)  Technically, I was never diagnosed until I did research and brought a bunch of paperwork about CH to my doctor who then said he agreed that I had cluster headches. He then gave me an anti-histamine (Zyrtec) and Ultracet (tramadol).  These meds, of course, did nothing.
Another Doc put me on an NSAID called indomethacin as a preventitive, which proceeded to give me diarrhea for a month and I still got the headaches anyway!
I've been refused oxygen by every doctor I have seen over the years... they act like I'm asking for heroin.  In fact, this last neuro said I couldn't try O2 until I "exhausted all drugs"
Right now the only med I have is Maxalt MLT which I think is working ok,  but it takes a while to kick in and you can only take 2 a day.
It angers me that pharma companies do not seem to research specific cluster headache meds because only a relatively small amount of people have them. We r stuck with meds that were originally intended for something else (like depression, migraine, convulsions, heart problems etc.).
I used to live in fear of these attacks, but now I'm just plain angry and want to fight back, not just for me but for all of us. If there is anything I can do to help fellow CH sufferers, I will. From raising awareness to raising money.  And lastly, I'd like you all to know that I consider you all brothers and sisters and I want you to remember that you are MUCH STRONGER than the average person because of this evil beast.

Don't get scared, get informed, and get angry! 

Yours in pain,
Steve

Either get a doc that will prescribe O2 or get your own. Welder's supply house, regulator on ebay, and an O₂ptimask from the ch.com store link to the left.

That'll help you get even.

Hey guys, thanx for the welcome,

    I literally just got home.  This is what took place today:
I went to the neuro and asked to speak with the PA from last time.  I inquired about oxygen therapy and she said "We don't give oxygen because it is not an approved therapy."  I left and drove to a medical supply store in my town. The womanthere was very nice, and much more knowledgable than ANY neuro I've seen before.  She said "Yes, it is an approved treatment, we have other cluster headache patients who are on the service."  She said she couldn't do anything without a script so she gave me her card and told me to tell the PA to call her.
I drove back to neuro (praying that my head doesn't decide to explode) and gave her the card.  She disappeared into the back and someone came out and handed me a script for 02..  Miraculous huh?  But wait, there's more!
I should've looked at the script b4 driving like a bat out of hell back to the medical supply because when I got there the woman looked at the script and said "It has to be at least over 5 litres." I glanced at the script and saw that it said 1 L 02.  Also, the neuro PA forgot to write what it was for..
Sigh
So now tomorrow I'll go back to neuro (head willing) and try to get her to write a proper script. Until then, it's Maxalt, which makes me feel like garbage but at least it shortens the agony to about 45 minutes instead of 4 hours.
Am i right in assuming that 15L 02 is what I should be looking for?
'

All ya'll have so much more patience with the medical world than I.  Even reading your story makes me frustrated Steve.  I wonder why any of us bother?  And that is not me just thinking out loud, it is a real question.  It is also not a "should" statement or me telling anyone what to do, it's just when so many people have the same story with the medical profession I wonder why we don't have a thread on the website that says:

"Get diagnosed so you know you aren't going to die (even though we will all eventually die ), beg for whatever prescription you need from your doc, get some O2 and then never go back to your doc, unless they are good."  I know that would be a long title. (tongue guy)

For me, a little psilocybin and caffeine have given me 2 good years.   No side effects, no doctor visits, no cost.  What's not to love.  I say it to let people know that it is out there as an option as per the clusterbusters.com

--Shaggy

Indeed good sir, indeed! 

I am quite the opposite, where in my teens/early 20's I would have seen the psilocybes as "drugs" and now in my 40's I see them as medicine.  And of course reading about all of the traditional shamanic uses of our fungal friends is interesting too. 

I never tried them until recently and found that some of my friends are quite well versed on their location, identification and use.  I do reforestation along streams in Portland so we see a lot of natural things.  Just last week we found morels and oyster mushrooms on one of our projects, both delicious and highly sought after.

Interesting how the esteemed doctors (not to bash on doctors, but I guess that is a bash on doctors) will prescribe all sorts of pharmaceuticals including opiates, but not the oxygen. 

Anywho, I'll end my diatribe now before it goes on all night.  In the end I hope everyone knows there are things that help tremendously with our condition. This website is great at getting the word out about a lot of things that help. 

(diagonal faced guy says "have a good day!")

--Shaggy

So is it the regulator that determines how much 02 your breathing?

Yes, and the mask, it MUST have a bag on it (nonrebreather), this is so you have a resivoure that will let you take full breaths. It's like only breathing thru the hose will only give you a limited amount, with the bag more is available.

Like drinking thru a straw as opposed to drinking from the glass.

If you get lucky the O2 place will give you a 15lpm reg. If not you can order you own without a Rx. Here's 2 places I've ordered from.

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or , for a 25lpm that fits E-tanks ($35) item# HC58725M, they're made in China.

Made in USA for any tank, Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or , $140 & up. This is a very high quality co. I have 2, one for my small & 1 for my big tank, and they go up to 60lpm. You can get lower lpm but why?

Don

ClusterSteve35 wrote on May 11^th, 2010 at 10:16pm:


I think you can say it's the regulator, plus the mask (a standard but lousy rebreather doesn't deliver 100% O2), plus your breathing rate (some of us choose to hyperventilate our O2).