I feel so deflated.

Yesterday I had another whopper, and took another 100mg of Imagrin (Imitrex). It seemed to make things slightly better, but only for a little while. I was at work, and had nothing else besides OTC pain killers with me. I decided to go see a GP that I’ve been to before just up the road, and see whether maybe he could give me a script for the 100mg Imigran tablets, since that is what I was taking anyway, and that would at least cut the cost of me popping them in the (seemingly vain) hope that I would get relief.

I also thought that maybe another opinion might help.

His conclusion: I have metabolic inflammation, which is causing the headaches. This has been caused by me carrying too much body fat. (I am 5ft 10in and 160lb)

He gave me some tramadol (which has at least given me a little relief before – moreso than any other painkiller) and sent me home to sleep and told me to come back so he could put me on a special diet to get rid of the fat.

I am so so so sick of this roller coaster ride. I actually had a glimmer of hope on Wednesday when I went a whole day with barely more than a niggle of pain. But I’ve made up for it in the last 2 days. The visits to the doctor, the expense, the piles of pills, the endless pain is driving me to insanity. We are in the middle of a heatwave here too, which I am sure is only making it worse.

I have stopped making my notes in my headache diary because it is just too depressing to be running out of room all the time.

One thing, though, is that in the last couple of days, my pain has – for the first time in this “cycle” – been concentrated much more primarily on my eyes. Up til now, there has been slight stabbing over my eyes as a precursor to my headaches at the back of my head, maybe an hour or two beforehand – the last 2 days, the headache has been primarily around my eyes. Still at the back of my head though.

I’m just venting. Feeling very sorry for myself. I don’t know how you guys do this, year after year. And how you did it for years without knowing what it was, without getting any relief at all. You’re my heroes, every single one of you.

Have you made any effort to obtain a prescription for oxygen at a high flow rate through a non-rebreather mask? If not, have you contacted a welding supply house to get a tank of oxygen to which you can affix your own regulator and mask? Have you explored START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE ?

The opiates are a nowhere road. It's a road. It goes nowhere.

Sorry if I can't remember the details of what you've tried and what you haven't. A lot of new folks visit here.

We want to help, but you gotta do your part, too.

My neurologist refused to even entertain the idea of letting me try O2. He basically said that if I wanted to, I could turn up at the local emergency department, and if they could contact him, and he felt like it, he would tell them to try it. I spoke to the local gas supply company, and they need a letter from the doc to supply it as a medical set-up.

But, I have a friend whose friend does welding - he's trying to find out right now if we can get our hands on a tank and flow meter - I bought a non-rebreather mask off the internet which arrived yesterday, and also a disposible humidifier.

I haven't checked the O2 section yet to see if there is info on how to set it all up... but if there isn't..... can anyone give me some tips?

Also - the mask said it's a once-only use - do you guys use them over and over?

Hi Melby,

Hey you and I pretty much feel the same about doctors.  :D

Although the symptoms you describe don't sound all that CH like to me, I'm glad you're on the case about trying out the O2 to see if that'll help. I suppose whether you respond to it or not could provide some clues, and we'll continue to hope you can get an appointment with a headache specialist.

If you have the link to the mask you bought, maybe we could check it out and lend an opinion. BTW, I've seen the resident O2 guru here "Batch" warn against using a humidifier (bubbler) at liter flows over 15 LPM.

Here are the details of the mask I bought:

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

MASK HIGH OXYGEN
MP3675

I agree that in so many ways, it doesn't sound like CH. But I sat down the other day and put together a page for each of a number of types of headache - migraine, CH, tension headaches and Occipital Neuralgia. (My GP thought maybe ON when they first started in Nov, after they didn't respond to triptans, but the Neuro said it wasn't - then they disappeared on their own). I looked at a couple of other types too but they all were obviously waaay off the mark.

I listed every single symptom, sign, location of pain, timing etc etc that I could find on the internet for each one, and marked notes about my own headaches against them. The only thing my headaches have in common with migraines and tension headaches is the fact that they hurt.

As for the other two - they seem to be like Occipital Neuralgia in location, and CH in intensity and occurrence/timing.

I just want it to stop  :'(

*******GREAT NEWS!!!!***************

My wonderful friend ended up talking to a friend of his who works at a hospital.... he is going to pick up a tank of O2 this afternoon, complete with regulator/flow meter - I can have it for a few days!!!!!!!

He is my hero.........

Should I try higher than 15L/min, just to be sure????? Any tips that are not already covered in the O2 info?

I'm not one of the uber qualified O2 gurus around here, but hey that looks like a bonafide nonrebreather mask with reservoir to me, so I think you may have picked a winner.  :)

Once only use doesn't make any sense to me, maybe that's just some legal BS (?), and yes we use them over and over...and over.

It's hard to know what would be the best liter flow to try the first time - and I guess you'll be finding out how high your regulator will even go - but it would seem reasonable to me to try 15 LPM at onset of attack the first time, and if it doesn't abort the attack, bump it to 25 LPM the next time if your regulator will go that high.

let us know how it goes!!

As we've said before, this dr needs to be fired. He is a headache specialist, right? If not, find one, especially one who is not closed to O2. Great news about the tank and best of luck. God bless. lance

The way to tell how well your flow works is to watch the reservoir bag. If you're aborting in less then 10 minutes, and not draining the bag with your breathing, the flow rate is working for you. I know people who can abort at rates as low as 8 LPM. It's an individual thing.

And what Lance said. CH is not a malady that lends itself to sitting back and waiting for doc's to help you. Don't hesitate to shop around for a new doc. Either one knowledgeable in CH, or just as good, one open to the material you bring them to educate them on CH.

Joe

Lance, the one who told me I'm fat is just a general practitioner, who knows little of my history and made a quick diagnosis. I hardly got a word in. My neuro is a general neuro, but I'm getting a referral from my GP to see a headache specialist.

What was most frustrating the other day, is that the neuro KNOWS about O2, he just wouldn't give it a go. That's just patient abuse, in my opinion.

Funny though, the MAINTENANCE MANAGER who helped my friend "borrow" the O2 tank (OK YES, WE STOLE AN O2 TANK FROM THE HOSPITAL!!!) even knew about O2 therapy for CH, but at least he has a heart and was willing to help me. And I didn't even need to pay him $100 to do it.

I've heard it said that neurosurgeons have God complexes. My neurologist might not actually consciously have the complex, but he's the Devil.

ANYWAY.... the tank is set up, and I've even had a little practice  :D :D :D

So I'm all set.

And Brew, I meant to say.....

THANK YOU!!!!!

Yesterday when you said, "We want to help, but you gotta do your part too" - you kicked my butt into action and I LOVE you for that

:-* :-* :-* :-* :-*

Melby29 wrote on Feb 4^th, 2011 at 4:02pm:

And Brew, I meant to say..... THANK YOU!!!!! Yesterday when you said, "We want to help, but you gotta do your part too" - you kicked my butt into action and I LOVE you for that :-* :-* :-* :-* :-*

Brew is good for that!    ;)

You're welcome, Melby.

We're a family here. And this family won't get anywhere if everybody doesn't do their part.

None of us should contribute to this being a dysfunctional family. I'm glad you took it in the spirit in which it was intended.

Our very own Dr. Goadsby who has spoken at several of our conventions and is a great advocate for us called this:


Quote:

What was most frustrating the other day, is that the neuro KNOWS about O2, he just wouldn't give it a go. That's just patient abuse, in my opinion.

   UNCONSCIONABLE  and it really is.

There are some who get fast relief from lower lpm regualtors, but when I went from 15 to 25 the difference was amazing in abort time.

Melby29 wrote on Feb 4^th, 2011 at 4:00pm:

(OK YES, WE STOLE AN O2 TANK FROM THE HOSPITAL!!!)

[smiley=crackup.gif]

Desperate times call for desperate measures...a girls gotta do what a girls gotta do....