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        New Message Board Archives >> 2003 Posts >> Just came back from New Neuro appt
        
(Message started by: Lori on Nov 12^th, 2003, 10:58am)

Title: Just came back from New Neuro appt
Post by Lori on Nov 12^th, 2003, 10:58am

Well, not as great as I hoped for. The first thing he said to me was "Clusters are rare in women." Grrrrrrr!!!!!!!!!
"Many times migraines and clusters are mis-diagnosed/confused." Really??? Yeah, and I said, "yes, I know. That is why I went so many years without getting proper treatment!" Well, even though he is "unsure it's clusters because I am a woman" he agreed it does seem that it is more clusters than migraine..DUH!!! God help me. He still agreed to follow my last given treatment with topomax and verapamil my next cycle. He also gave me a script for O2. The thing is he prescribed it at 6 liters. Now, will that possibly work? I am now working with a medical supply place to see if my insurance is going to approve it. So, don't know yet, waiting on a phonecall back right now from them. The O2 supplier did say that if the 6 liters is not effective, as long as the doc sends them another script to increase it, they can easily send someone to change the regulator. So..all in all it's not a total lost cause. I will be treated, but it's frustrating to see that this is still seen as a man thing and women will still go undiagnosed more because of lack of knowlege. I did bring him an OUCH bumper sticker though. :) Hopefully he will take the time to go check out the OUCH site.

Edit: Just got the c/b from O2 supplier..my ins. will cover 80% of the bill. So, that is cool.

Title: Re: Just came back from New Neuro appt
Post by vig on Nov 12^th, 2003, 11:00am

It appears the majority of doctors still have not received their wake up calls.

Title: Re: Just came back from New Neuro appt
Post by gmlevenhagen on Nov 12^th, 2003, 11:07am

I am so with ya on this on sister

Gena

Title: Re: Just came back from New Neuro appt
Post by drnoe on Nov 12^th, 2003, 11:13am

Hi,
What a drag! A glimmer of light but mostly same old, ditto.
Someday we will laugh.
But not yet.
Glad you got some affordable O2.
dan

Title: Re: Just came back from New Neuro appt
Post by Jimi on Nov 12^th, 2003, 11:46am

6 lpm may not be high enough. Most here use at least 10lpm. Some have gotten relief with 8 but when one hits you don't want the stress of wondering if this is enough flow. I would recommend you call the dr. and see if he will change the script to a regulator that has at least a 8-15lpm regulator.
Jimi

Title: Re: Just came back from New Neuro appt
Post by 9erfan on Nov 12^th, 2003, 1:22pm

Hi Lori,

I'm glad the insurance is covering most of the oxygen. I don't think you're going to get adequate relief from 6lpm. Get on that Dr's ass now and tell him you need at LEAST 10-12 lpm. I immediately crank mine up to 15lpm and don't waste my time trying the lower levels. Keep harrassing that Dr until he complies.

Good luck,
Virginia

Title: Re: Just came back from New Neuro appt
Post by Edna on Nov 12^th, 2003, 1:33pm

Lori, sad to say but I'm guessing most will "recognize" the many of women sufferers with ch at about the same time they come to realize the many women who are misdiagnosed with "heart" attacks too! Because after all, it's usually a man thing......puleeeez.

Anyway, wishing you the best of luck and hoping that doc complies with your request!!

pf wishes,
EDNA

Title: Re: Just came back from New Neuro appt
Post by Lori on Nov 12^th, 2003, 2:01pm

Thanks and yes, I think I will go ahead and push for the at least 12lpm script. If he won't, then maybe I can get my GP to do it for me. All in all, I am luckier than some so I won't complain too much. For the moment. Wishing you all pf days! BTW, I'm not in cycle yet, just getting ready for possible Feb visit. Later..

Title: Re: Just came back from New Neuro appt
Post by don on Nov 12^th, 2003, 5:24pm

6 litres might be good for blowing up balloons but for CH you need 9 +

Title: Re: Just came back from New Neuro appt
Post by cathy on Nov 12^th, 2003, 6:28pm

The first thing he said to me was "Clusters are rare in women."

I bet he also thinks he's a Good Doctor.... [smiley=laugh.gif]

Glad it wasn't all doom and gloom Lori and that you get the right regulator...!! Good luck with the O2

Cathy :)

Title: the mRe: Just came back from New Neuro appt
Post by Little Deb on Nov 12^th, 2003, 6:54pm

I am glad to hear you are getting prepared. I guess I better do that too. I just took my son to Raleigh Neurology today, and while I was there, I picked up some business cards to find a neuro. I asked the desk girl if one was better with clusters. She said "oh, well they are all treat headaches...", yeah, yeah.
Anyway, she said the only one I would be able to get an appt. with was this female doctor. I said "why, she doesn't know what she is doing??"
Guess I will give her a try. Maybe she won't tell me that clusters are for men. I am going to get stocked up on all the meds I can, and o2.
Sucks living in fear. I hope Feb. is nothing but a wonderful month for you, Lori.
LD

Title: Re: Just came back from New Neuro appt
Post by Prense on Nov 12^th, 2003, 7:03pm

Just find out what the max lpm the lower one will put out and push for something slightly out of its range. That will get you into the next reg and your dumbass doc wont be there to smack your hand when you crank it to 15. My O2 was prescribed by my GP while I was waiting for my neuro appointment.

Meanwhile, if you have a choice, and it's practical...I'd move along...of course, it doesn't have to be a neuro either. He's going to probably continue to think that you were misdiagnosed with CH for quite some time...That's not quality care.

One of the first things I told my new HA specialist was that I'd move to another neuro in a heartbeat if things seemed "off". She laughed...so far, so good. Currently, I drive 480 miles round trip to see her...hopefully, she doesn't piss me off! ;;D

Title: Re: Just came back from New Neuro appt
Post by M.Laun on Nov 12^th, 2003, 8:35pm

I used O2 for yrs. Still have that bottle and regulator right next to my bed. Once when the pain started subsiding i reduced from 10lpm to about 5lpm. The beast started comming back full force. believe me i only tried that 1 time!

In other words i hope 6lpm will work for you but i doubt it.

Title: Re: Just came back from New Neuro appt
Post by BarbaraD on Nov 12^th, 2003, 8:41pm

I usually use it on 8lpm, but nothing below that works..

Make sure to get a regulator that goes higher in case the lower lpm doesn't work.

Hugs BD

Title: Re: Just came back from New Neuro appt
Post by Lori on Nov 12^th, 2003, 11:28pm

I am convinced now! I will ask for a higher lpm and if he won't comply, I'll try my GP for that. :) Thanks you all for the replies.

Title: Re: Just came back from New Neuro appt
Post by TxBasslady on Nov 13^th, 2003, 1:35am

;)
Good luck to ya Lori.

Maybe the Feb cycle won't come about. 8)

Sending ya lotz of wishes and vibes for a non-cycle February. ;)

Jean

Title: Re: Just came back from New Neuro appt
Post by suzy617 on Nov 13^th, 2003, 3:18am

on 11/13/03 at 01:35:04, TxBasslady wrote:

;)

Maybe the Feb cycle won't come about. 8)

Hey you never know. I was fortunate enough this sept-oct to miss mine. Only the 2nd time in 22 years. I figure I might have scared the beast off this time cause I was finally well prepared to do war with him.
Good luck Lori,

Suzy