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

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

  This is per Marc.  Get educated and get on board.

                 Potter

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.

Hi Steve,

I'm an episodic clusterhead, same as you.  Sounds like your CH patterns are similar to mine, and of similar duration.


ClusterSteve35 wrote on May 11^th, 2010 at 2:48pm:

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.

You're right.  It's a familiar story.


ClusterSteve35 wrote on May 11^th, 2010 at 2:48pm:

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!

Indomethacin works well to treat paroxysmal hemicrania, not so well to treat CH.  Again, this is pretty familiar stuff.  On the plus side, it would seem to rule out PH.


ClusterSteve35 wrote on May 11^th, 2010 at 2:48pm:

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"

Fortunately, it's not up to him.  It's up to you. 

While I do not and will not recommend that you do this, I will simply say that some of us use oxygen obtained from a welding supply company (comes from the same tank as "medical" oxygen).  A tank can be purchased or rented for a reasonable price.  Regulators and masks can be purchased from many different sources, and do not require a prescription.   

For more information on the proper use of oxygen to treat CH, see the following link:

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

There are plenty of folks here with more knowledge and expertise in this area who will be piping in, I'm sure.

Welcome to CH.com.

Best wishes,

George

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?
'

MINIMUM 15 LPM. There are a few on the board who can abort at levels as low as 7 LPM, they are definitely the minority. Some have found that while 15 LPM was okay, 25 was great. So go with the 15 for now.

And remember, it needs to be a Non Re Breather Mask. Rebreather masks and nasal canulas doom you to failure as you must get pure 02 to the lungs, no outside air, no exhaled air.

Wishing you luck. Can be a hell of a battle to GET the 02 but so worth it.

Joe

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. :P (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 8-)

You're absolutely right shaggy.  Unless you find a good doctor, seeking medical care can be the most frustrating thing in the world.  Especially when they are ignorant AND snotty...

As far as psilocybin, I wish I would have known about it when I was 19.  I'd love to give it a shot after all the positive things I've read, but I don't know where to get that stuff now that I'm 35.  :-)
I recently read that 'shrooms :-) can not only abort the headache but end the cluster period for up to 12 months.
Of course, like everything else, they say it may not work for everyone, but it sounds promising enough..  Any port in a storm....

-Steve-

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

Just want to chime in here with something you probably already have thought of: if all you can get is an O2 prescription for 7-10 liters, you can always take matters into your own hands and just bump it up higher than that once you get the O2 in your paws.

Also, the med supply houses often don't have hi flow regulators, and my local one (an Apria branch) didn't have a non rebreather mask, so you may have to get on the stick about ordering those online.

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

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

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

Yes. 

Most are adjustable to some extent.  If you get one that goes above 15 lpm, you can just crank it up to the level that works best for you.

Alternatively, if you elect to get a demand regulator, you can get as much as you can huff. 

Best,

George

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.

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

Made in USA for any tank, START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE, $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

bejeeber wrote on May 11^th, 2010 at 10:07pm:

Just want to chime in here with something you probably already have thought of: if all you can get is an O2 prescription for 7-10 liters, you can always take matters into your own hands and just bump it up higher than that once you get the O2 in your paws. Also, the med supply houses often don't have hi flow regulators, and my local one (an Apria branch) didn't have a non rebreather mask, so you may have to get on the stick about ordering those online.

YES...YES...a THOUSAND times YES!!!

I am a little fearful that we concentrate on the details so much here that we may confuse folks who don't know "how to play the game".

O2 user here since 1985. NEVER..at any point, has my script (which I demanded cuz the doc had no idea) said anything other than 5-8 ml/min O2 for cluster headache.

While my supplier...Lincare...had other ch patients...they had precious little idea what we needed. SOOOO..I learned from National Headache Foundation AND ch.com...and I bought my own regulator and I bought my own facemask (used to be clustermask) and used them WITHOUT regard for the "script"...which is just a ticket to get you what you need. THAT'S what's important! Get the dang script.

Now..I'm not naive..and I recognize that the fight with the insurance companies is a whole nother battle indeed...but I think of it like Wildwood Flower/Jim Stafford "settin' on that sack of seeds" ...it's a whole lot friggin easier to fight when you aint "dancin".

Best,

Jon

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

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

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).