Author |
Topic: Doctor visit to get O2 today..... (Read 385 times) |
|
seasonalboomer
CH.com Alumnus
New Board Hall of Famer
If I think hard enough maybe it'll go away.....
Gender: 
Posts: 2248
|
 |
Doctor visit to get O2 today.....
« on: Jul 20th, 2005, 3:43pm » |
 Quote  Modify
|
Everyone has their “went to the doctor, and guess what happened” story to tell.
Here’s mine today.
The last few days I’ve been feeling a little whisp or hint that a cycle might be headed my way. Still haven’t had a hit yet, but you know that feeling like the back of your eyeball is just being brushed by something. Not enough to freak out about but a little bit of uh-oh nonetheless.
So, this time I had determined I was going to make sure I had an O2 set-up in place before I cycled – I just didn’t expect my cycle before fall. Having spoken with my general practioner some time ago about my CH I’d told him that I wanted to talk to him about an O2 rig. Today I set the appointment.
I went in loaded with my CH.com printouts of the O2 set-up. Had to be 10-15 lpm. Had to be non-rebreather. Blah blah blah. He asks, “well what else are you doing for your cluster headache.” I was trying to avoid this, but it came up and I showed him the printout from Floridian’s Kudzu page. “Hmm,” he said. “That’s very interesting, what about any of the traditional medications.”
To which I told him that I had never used imitrex, never used verapamil, never used topomax, or lithium and was not interested in doing so because with the combination of )2 and Kudzu I felt that I was going to have the artillery in place I wanted for my next cycle.
He proceeded to tell me that Imitrex works every one of his 100’s of cluster patients. (HE’S A GP!) I said I understand what he is saying, but was looking for a combination that would allow me to have an effective abortive (O2) and a preventative (Kudzu). He said that the Imitrex works for almost everybody and will stop a cycle and is effective in its tablet, inhalable and injectable form. That his wife who is a headache sufferer even uses it and it works.
So, the idea that I could just go in and say “doc, give me a script for O2” was going by the wayside. Finally, after saying that O2 should work at 4-5 lpm I finally said, “look, I hear what you’re saying but my “research” tells me I might as well lay on the floor and roll around in pain than stick nasal tubes at 4-5 lpm. I want a rebreather at 10-15 lpm.”
So finally he did it. It was worth the fight, hopefully and within a few days I should have my O2 rig, ready for takeoff.
I took the Imitrex samples he passed me on the way out – even though he didn’t want to give me the injectable I relented. Oh, and a coupon for more Imitrex at $10 off (Hah!)
So I got what I wanted but he didn’t have a high opinion of getting my information from the internet. I grinned and beared that one. Alls well that ends well I guess.
|
|
 IP Logged |
-----------------------------------------------------
seasonal boomer
-----------------------------------------------------
|
|
|
unsolved1
Guest
|
|
Re: Doctor visit to get O2 today.....
« Reply #1 on: Jul 20th, 2005, 4:06pm » |
Quote Modify
 Remove
|
LOL ... 100's of cluster patients my ass  
Good going ... you stuck to your guns and got what you wanted / needed 
Unsolved
|
|
IP Logged |
|
|
|
wip5150
New Board Junior
I have tired head
Gender:
Posts: 87
|
|
Re: Doctor visit to get O2 today.....
« Reply #2 on: Jul 20th, 2005, 4:55pm » |
Quote Modify
|
Good for you!!
And his comment sounds like a bad music advertisment, "hundreds of cluster sufferer's CAN'T be wrong! Use the Imitrex tabs!"
|
|
IP Logged |
Ever dance with the devil in the pale moonlight? I have, and man it hurts
|
|
|
pattik
CH.com Alumnus
New Board Hall of Famer
 
Gender: 
Posts: 2404
|
|
Re: Doctor visit to get O2 today.....
« Reply #3 on: Jul 20th, 2005, 5:06pm » |
Quote Modify
|
Thanks, Boomer....and inspiring story for those of us with reluctant docs. Persistance can triumph. 
Patti
|
|
IP Logged |
The voyage of discovery is not about seeking new landscapes, it's about having new eyes--Marcel Proust
|
|
|
Bob P
New Board Hall of Famer
Shut up Bob!
Gender:
Posts: 3436
|
|
Re: Doctor visit to get O2 today.....
« Reply #4 on: Jul 20th, 2005, 6:17pm » |
Quote Modify
|
Dude,
You aren't getting your info off the internet, you're getting it from 1000's of cluster sufferers.
Imitrex probably is the most successful prescription abortive but try to get the doc to prescribe 3 doses a day or try to get the insurance to cover that amount and you'll see the reason most of us go elsewhere.
|
|
IP Logged |
Mrs. Barlow, I never, and I repeat never, ever pissed in your steam iron.
"SHUT UP HUB!"
|
|
|
Jonny
CH.com Alumnus
New Board Hall of Famer
Give me a shovel Ill dig my own grave!
Gender:
Posts: 26213
|
|
Re: Doctor visit to get O2 today.....
« Reply #5 on: Jul 20th, 2005, 7:08pm » |
Quote Modify
|
on Jul 20th, 2005, 6:17pm, Bob P wrote:Dude,
You aren't getting your info off the internet, you're getting it from 1000's of cluster sufferers.
Imitrex probably is the most successful prescription abortive but try to get the doc to prescribe 3 doses a day or try to get the insurance to cover that amount and you'll see the reason most of us go elsewhere. |
|
RIGHT ON!!!!
|
|
IP Logged |
It is up to YOU to educate yourself and then help your doctor plan your treatment. If you just sit down in front of your doctor and say "make me better" you are setting yourself up for a great deal of pain.
- Guiseppi
|
|
|
Kiwiinoz58
New Board Junior
Couldn't ya just SCREAM
  
Gender:
Posts: 97
|
|
Re: Doctor visit to get O2 today.....
« Reply #6 on: Jul 20th, 2005, 7:41pm » |
Quote Modify
|
At least you are lucky enough to get the O2 albeit that the silly sod was so reluctant. I thought I'd convinced this local GP that I needed it. He wanted to confirm it with my neuro first and 8 days later I'm still waiting for him to contact me. In the meantime of course I've had 6 days straight of kip 9s and am almost at my wits end!
Good on ya for sticking to your guns 
Cheers,
Jacqs
|
|
IP Logged |
We are here for a good time not a long time. Time then to think outside the square and to give and get the best possibles of love and life.
|
|
|
RichardN
New Board Hall of Famer
Gender:
Posts: 690
|
|
Re: Doctor visit to get O2 today.....
« Reply #7 on: Jul 20th, 2005, 9:48pm » |
Quote Modify
|
WAY TO GO ! 
02 Lover,
Richard
|
|
IP Logged |
I can live with the beast as long as I don't have to "dance" with the bastard.
|
|
|
Juce
New Board Newbie
I love YaBB 1G - SP1!
Posts: 7
|
|
Re: Doctor visit to get O2 today.....
« Reply #8 on: Jul 20th, 2005, 10:13pm » |
Quote Modify
|
the first Dr. that I went to told me I might have cluster headaches but probably not because they usually aren't one sided. That shows what some of these not a very nice persons really know!
|
|
IP Logged |
|
|
|
Topical
New Board Old Timer
Posts: 256
|
|
Re: Doctor visit to get O2 today.....
« Reply #9 on: Jul 21st, 2005, 7:44am » |
Quote Modify
|
Kiwi- That is rediculous. Please call them every hour until you have your answer. You should not have to go through Kip 9s. I would have demanded an answer. I realize he is a GP, but If your doc needed to do consulation with another doctor then ask who that person is and see them instead. Hope it works out, hang in there. If he doesn't give the script, find another doc who will.
I am seriously wondering if doctors are getting kickbacks or something else for prescribing medicine. Free vacations maybe?
OOPS, forgot to say WTG seasonalboomer! Glad to hear things worked out for you.
|
| « Last Edit: Jul 21st, 2005, 7:46am by Topical » |
IP Logged |
|
|
|
paul_pero
New Board Junior
zdrastvuyte
Gender:
Posts: 93
|
|
Re: Doctor visit to get O2 today.....
« Reply #10 on: Jul 21st, 2005, 9:17am » |
Quote Modify
|
Congrats Seasonalboomer!!!
well worth the effort!!
Paul
|
|
IP Logged |
|
|
|
seasonalboomer
CH.com Alumnus
New Board Hall of Famer
If I think hard enough maybe it'll go away.....
Gender:
Posts: 2248
|
|
Re: Doctor visit to get O2 today.....
« Reply #11 on: Jul 25th, 2005, 8:41am » |
Quote Modify
|
on Jul 21st, 2005, 9:17am, paul_pero wrote:
well worth the effort!!
|
|
And THE PAYOFF came yesterday. I went for a little exercise walk (in the heat!) a few hours before I was supposed to go see Bruce Springsteen. I'm about a half mile away from the house and all of a sudden it becomes clear that a hit was taking hold. So I took off like a shot and ran to the house, turned that tank on, held that mask on and after less than 5 minutes. GONE!!!!!!!!
My first O2 experience. I can not give enough thanks to all of you who motivated me to get the O2.
Springsteen was unfreakin'believable!
|
|
IP Logged |
-----------------------------------------------------
seasonal boomer
-----------------------------------------------------
|
|
|
Topical
New Board Old Timer
Posts: 256
|
|
Re: Doctor visit to get O2 today.....
« Reply #12 on: Jul 25th, 2005, 9:57pm » |
Quote Modify
|
Awesome! (Talk about a panic attack there on the road  ).
Great to hear it's working so well for you. It made a dramatic change in my own life too. I walk to the tank knowing that I have some ammo to fight off the CH. It's such a relief in having it there year round just in case. I wish it worked for all of us CH'ers.
Spread the word and let your doc know the success you've had with it. The O2 industry isn't sending free samples or reminding docs how well it works for CH. It's up to us, the sufferers to let them know. It should be the first abortive treatment tried not after Imitrex. All those years testing other meds....all that needless pain...all the side effects.
I'm very happy for you. 
|
|
IP Logged |
|
|
|
LeLimey
CH.com Alumnus
New Board Hall of Famer
OUCH-US - Less "ME" and more "WE"
Gender:
Posts: 11720
|
|
Re: Doctor visit to get O2 today.....
« Reply #13 on: Jul 26th, 2005, 5:36am » |
Quote Modify
|
on Jul 20th, 2005, 6:17pm, Bob P wrote:You aren't getting your info off the internet, you're getting it from 1000's of cluster sufferers.
|
|
I shall remember this sentence, its about the best answer to a ratbag doctor I've seen! Well done BobP!
Scott I'm delighted you got the O2, its incredible isn't it? It's my Godsend for sure.
|
|
IP Logged |
The arsehole I'm divorcing needs to get a life and stop stalking mine
|
|
|
seasonalboomer
CH.com Alumnus
New Board Hall of Famer
If I think hard enough maybe it'll go away.....
Gender:
Posts: 2248
|
|
Re: Doctor visit to get O2 today.....
« Reply #14 on: Aug 1st, 2005, 9:25am » |
Quote Modify
|
Went away for the weekend after making arrangements fo rmy little portable O2 to go with. Had a great weekend and aborted all but one hit. So my record stands Me and O2 = 4, Bastard Cluster Headache = 1
Came back to a letter (after I had sent him a follow up "note" about my feelings regarding the visit) from my doc partly apologizing for the misunderstanding and thanking me for the info I gave him from Flo's website about Kudzu. Overall a nice response and a positive note.
Feeling a little punky headed today. For you clinicians, punky headed is clinically rated somewhere between that of being addle-brained and that of a soccer ball.
I'm putting together some thoughts on Kudzu - Cycle #2. In summary, my cycle has officially been "on" for 2 weeks and 1 day. I started Kudzu on Day 2 and have had 4 hits since the opening volley. Only one to a Kip 6 + which was my own fault for trying to run in the heat - even the O2 couldn't take it down. The rest have been light temblors -- a reminder that I'm in cycle, but not enough to scream to the heavens about. 5 hits in 2 weeks, only one that was distressing, that's pretty good (if pretty good is allowed to be used to describe it). Is Kudzu working? I thought i'd be able to say unequivocally on the 2nd cycle, but hell, I still don't know -- I think so, but, maybe I'll be able to me more glowing after the cycle is gone and the days are sunnier.
Scott
|
|
IP Logged |
-----------------------------------------------------
seasonal boomer
-----------------------------------------------------
|
|
|
pattik
CH.com Alumnus
New Board Hall of Famer
Gender:
Posts: 2404
|
|
Re: Doctor visit to get O2 today.....
« Reply #15 on: Aug 1st, 2005, 10:17am » |
Quote Modify
|
Hang in there, Scott. It sounds like you are definitely beating the beast this time around. I had an unusual summer episode last summer as well (I'm usually a fall person), and you may find that it doesn't last as long. I hope that's the case for you.
Patti
|
|
IP Logged |
The voyage of discovery is not about seeking new landscapes, it's about having new eyes--Marcel Proust
|
|
|
scarmig
New Board Newbie
Gender:
Posts: 18
|
|
Re: Doctor visit to get O2 today.....
« Reply #16 on: Aug 1st, 2005, 10:20am » |
Quote Modify
|
on Jul 21st, 2005, 7:44am, Topical wrote:
I am seriously wondering if doctors are getting kickbacks or something else for prescribing medicine. Free vacations maybe?
|
|
Your cynicism is well-founded.
|
|
IP Logged |
|
|
|
seasonalboomer
CH.com Alumnus
New Board Hall of Famer
If I think hard enough maybe it'll go away.....
Gender:
Posts: 2248
|
|
Re: Doctor visit to get O2 today.....
« Reply #17 on: Aug 8th, 2005, 9:32am » |
Quote Modify
|
Let me precede this post by admitting that i have determined that I am stubborn beyond common sense and self-righteous in my aim to fight these things "med free".
After 1 week with no hits, three days off of kudzu, and no hits, couple nights with a few beers and no hits, then.... I went running this morning. I was so excited to get out on the road and stretch the legs and sweat some. So, I'm sucking on O2, strapping ice on, knockin' back a Red Bull. And the beast grinned and bit harder.
So, finally after seeing that nothing in my arsenal was working I said, "fuck this". And I did it. I went to the "other side" and used the Imitrex injector sample.
I'll be writing my good doctor a little later today to ask for a full prescription for these little gems. While I think my cycle really is about wrapped up, I think having these around will be a good idea.
Can y'all tell I feel a little funny about all this. I had to refer back to a list of lessons i've learned in my life:
#11: "Saying you will never do something based on principle is like saying you will, if you had no principles. It is an unnecessary gauntlet."
Scott
|
| « Last Edit: Aug 8th, 2005, 9:34am by seasonalboomer » |
IP Logged |
-----------------------------------------------------
seasonal boomer
-----------------------------------------------------
|
|
|
|
|
|
Home
Help
Search
Members
Member Map
Login
Register
Reply
Notify of replies
Send Topic
Print
test rss