Clusterheadaches.com Message Board


    
      
        Clusterheadaches.com Message Board
        (http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi)
      

        New Message Board Archives >> 2003 Posts >> Help with oxygen please before I totally flip out!
        
(Message started by: amber on Mar 30^th, 2003, 11:40pm)

Title: Help with oxygen please before I totally flip out!
Post by amber on Mar 30^th, 2003, 11:40pm

Hey everyone.

I'm having a really shitty time with my headaches and I'm in panic mode.

I can't get anything to help. None of the meds the docs are trying are working, and I build up a tolerance to all the abortives so fast that it just doesn't seem worth it.

I got diagnosed with another permanent condition a month before my headaches went chronic, and I'm just feeling really desperate. What kind of life is this? I just don't know what to do anymore.

I haven't had the opportunity to try oxygen yet, and I know a lot of people rave about it. Could someone please tell me what I need to tell me doc to give me? I know there's something called a non-rebreather mask but I don't know the first thing about what it looks like or how to go about getting one.

Anything you could tell me about what I should ask for would be helpful.

thanks
amber

Title: Re: Help with oxygen please before I totally flip
Post by Mastifflvr28 on Mar 30^th, 2003, 11:50pm

Amber,
sorry your having it so rough right now.
Not4hire is working on an O2 button right now, but in the meantime, go over to the OUCH site and on Meds, print off all the info on oxygen that you can find.

Has to be 100% oxygen through a NON rebreather mask at 8 to 10 LPM for aproximately 15 to 20 minutes (or 5 minutes past the pain going away). Your doc can write you a script for a medical supply company that can deliver the oxygen to you.

Good luck!!
Mast

Title: Re: Help with oxygen please before I totally flip
Post by amber on Mar 30^th, 2003, 11:53pm

thanks mast, you're wonderful for getting to me so quickly! *hugs*
amber

Title: Re: Help with oxygen please before I totally flip
Post by Not4Hire on Mar 31^st, 2003, 12:03am

Amber .....check your email....

Steve(N4H)

Title: Re: Help with oxygen please before I totally flip
Post by eggie on Mar 31^st, 2003, 12:40am

:obad day well if the oxygen don't work here one that will. get a demeral shot it works for me every time. kicks the shit out of the demon. hope you are pain free soon eggie

Title: Re: Help with oxygen please before I totally flip
Post by brain_cramps on Mar 31^st, 2003, 8:28am

on 03/31/03 at 00:40:46, eggie wrote:

get a demeral shot it works for me every time. kicks the shit out of the demon.

that's not the only thing demerol will 'kick the shit out of'. :o >:(

been down that road years ago,
grant

Title: Re: Help with oxygen please before I totally flip
Post by catlind on Mar 31^st, 2003, 8:33am

Demerol has never touched my CH's. It kicks the shit out of a migraine, but never touches a CH. My experience is only nubane or morphine will take the edge off a CH for me. It won't abort it, but it will make it more bearable.

Advocating narcotics in the treatment of CH's is a dangerous thing to do IMO

Cat

Title: Re: Help with oxygen please before I totally flip
Post by brain_cramps on Mar 31^st, 2003, 8:36am

on 03/31/03 at 08:33:13, catlind wrote:

Advocating narcotics in the treatment of CH's is a dangerous thing to do IMO

Absolutely!!!

Title: Re: Help with oxygen please before I totally flip
Post by amber on Mar 31^st, 2003, 10:16am

heheh in all my pain i would tend to agree. I occassionally pop a couple of percocets, which doesn't kill the pain, but it does allow me to sleep and sometimes that's important too.

But they don't kill the pain, and so relying on them is bad news. For a while back in the fall, we didn't know what was wrong with me, ...tmj, eye problems, medications that were inducing headaches etc...the docs let me take percocet daily...for like 6 weeks. Needless to say it didn't end up working (although it did relieve some pain for a while initially...i was just happy to get out of the house for a while)...I had to go through a short term withdrawal and all the stigma of people thinking i was a big time druggie.

How fun.

Title: Re: Help with oxygen please before I totally flip
Post by K. on Mar 31^st, 2003, 10:24pm

on 03/31/03 at 00:40:46, eggie wrote:

:get a demeral shot it works for me every time. kicks the shit out of the demon.

Before I was actually diagnosed with CH I used to spend a lot of time in the ER and depending on which ER I went to I would either get Demoral or Nubane (spell?). I still had the severe pain in my head but I was too out of it to pace, rock or bang my head. What I am trying to say is that these types of meds don't work for CH. They mess you up and then you have a hell of a lot more to deal with then CH which is what got you there in the first place.

Take care of yourself and learn how to use the O2.
Karen

Title: Re: Help with oxygen please before I totally flip
Post by juvy on Mar 31^st, 2003, 10:39pm

Amber,

If all else fails...I think i read it hear or somewhere else...Go down to your local friendly Fire Department...explain what is going on and ask for a hit of O2. Make sure you bring the Info on it that you have gathered...

From what i hear Firemen are really nice. I had to do it when i came to Texas for a family reunion. Airline wouldn't let me bring my O2 bottle on the plane. O2 use to take the edge off my CPH for a couple of hours but then it stopped working completely.

But remember this is a last resort, if the DR. won't give you what you need.

Wishing you PFDAN,
April

Title: Re: Help with oxygen please before I totally flip
Post by BillyJ. on Apr 1^st, 2003, 12:31pm

Amber,
Hi my name is Minnie and I'm a supporter for my husband Billy. Oxygen works for him I hope it will for you.He keeps a prescription for it with him.That way theres no question if he has to go to medical where he works or had to go somewhere else. Maybe your doc will do that for you.It says the rate to use and why, no reason to speak more then you have to when being hit by the beast. hope this helps a little. :)
pfdan,
Minnie

Title: Re: Help with oxygen please before I totally flip
Post by achinghead on Apr 1^st, 2003, 2:36pm

Amber.. I just got my tanks and masks today.. went through hell too.. not from the doc.. but trying to locate the proper regulator and locating the masks.. I ended up going to the firestation and the emts there gave me 4 masks and also let me borrow a regulator. HATS OFF TO THEM.. seems that the med supply places dont have the masks and the regulators only went to 6 or 8.. you might want to try that once your doc gets you the script. Seems like that was the easiest part for me.. Got the script last Thursday.. finally got the tanks and everything else today.. now .. lets see if it works for me.. Ill let ya know

Title: Re: Help with oxygen please before I totally flip
Post by brain_cramps on Apr 1^st, 2003, 2:42pm

on 04/01/03 at 14:36:46, achinghead wrote:

Got the script last Thursday.. finally got the tanks and everything else today.. now .. lets see if it works for me.. Ill let ya know

Great news. Good Luck.

Keep us posted,
grant

Title: Re: Help with oxygen please before I totally flip
Post by catlind on Apr 1^st, 2003, 3:11pm

Damn, that is awesome! Our firefighters our true heroes in every sense of the word! They never cease to amaze me with their dedication to help their fellow neighbor.

Cat

Title: Re: Help with oxygen please before I totally flip
Post by amber on Apr 1^st, 2003, 6:11pm

Thanks everyone...really :D

I just wanted to post a little ventilation of sorts.

I hate doctors. Really I do. When I find one I like I'll let you know but until then, they all suck ;)

My doc today..I went in begging for pain relief. I'm like "here's what I take to knock myself out at night because i just cannot deal with this" (it's like muscle relaxants...maybe some percocet or T3's, and some elavil that i'm supposed to take every night. And I don't take it every night.
I say to her..."i don't WANT to take this..and narcotics dont' take away my pain entirely but when nothing else is working, it does take me away from it enough to get some things done or sleep. And right now I'm not functioning at ALL. I'm getting medical extensions on all my papers, I'm hiring a friend to help clean my appt, and I sit at home, call my mom, and tell her I'd be a hell of a lot cheaper (and more pain free) If I were dead...this is no way to live."
what does my doc say? She's like "why doesn't the neuro get you in more often? I think you should call him."
So that's it. She gave me the prescription for O2 that I can fill tomorrow, thank-god, but if, for some strange reason, it doesn't work...I'm screwed. Nothing else is helping me at this point. I build up tolerance in a flash (hey flash!!!) and the next thing you know I'm back to square one.
I just feel...neglected and scared. I'm all alone here in stupid montreal when my family is out in BC. I go to doc appts alone and i KNOW that if there was someone else there I'd get more respect and more done. Advocates are always better. I just feel like I'm not saying something right that they don't believe me or something....a young student female student walks in and well....walks out with nothing.
Why don't they give a rat's ass how I feel or function?
I haven't tried any sort of injectable drug yet. Nothing has been offered to me. I've gone in with a list of possibilities, and it just seems so...pointless. I walk in with hope and out with nothing.

So let's just pray that this fucking oxygen will work. Sorry for the profanity but I'm really really angry right now.

thanks for listening
Amber

Title: Re: Help with oxygen please before I totally flip
Post by Mastifflvr28 on Apr 1^st, 2003, 9:41pm

AMBER!!!
Big huge vibes going out to you that the fucking oxygen will work for you!!

Next time demand some imitrex and verapamil too (are you on Verap?)

Also, next time you plan on going to BC, lemme know, maybe we can meet.

Mast

Title: Re: Help with oxygen please before I totally flip
Post by JDH on Apr 1^st, 2003, 10:02pm

on 04/01/03 at 21:41:27, Mastifflvr28 wrote:

Next time demand some imitrex and verapamil too (are you on Verap?)

Mast

That's the best CH advice you can get Amber, DEMAND IT!...and if they won't listen, go somewhere else.
Good luck with the o2, it's done wonders for me.
pfdan's to you,

Jim

Title: Re: Help with oxygen please before I totally flip
Post by amber on Apr 2^nd, 2003, 12:03am

hey mast...I can't take verap. I'm one of the rare people that it makes headaches worse for. Was on it for 3 days and had solid kip 9's for most of that time.

And yes, I'm thinking of getting a new gp!!!

I'm moving back to BC this summer actually..where in BC are you? :)
amber

thanks everyone for the support...hope the o2 helps tomorrow
Amber

Title: Re: Help with oxygen please before I totally flip
Post by Mastifflvr28 on Apr 2^nd, 2003, 1:27am

I'm actually just across the border down in Bellingham.

Let us know how the O2 helps out Amber,

Mast