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Cluster Headache Help and Support >> Getting to Know Ya >> First Neuro appt 2 moro.........advice 4 a Newbie!
(Message started by: debOUCH on Mar 16th, 2008, 9:32pm)

Title: First Neuro appt 2 moro.........advice 4 a Newbie!
Post by debOUCH on Mar 16th, 2008, 9:32pm
..... armed with folders of info from u guys, logs, etc................any other suggestions would be greatly appreciated! My appt is @ 2:20 on Long Island...........thanks , u guys are my lifeline......i dont know what i would do without you all.........i wish u all a pf nite! [smiley=hug.gif]

Title: Re: First Neuro appt 2 moro.........advice 4 a New
Post by brewcrew on Mar 16th, 2008, 9:50pm
Remember that they block out a certain amount of time for certain types of visits. Most likely you won't have time to cover everything you want to. So put the info in your folders into categories: symptoms, abortives, preventatives, etc. And be prepared to leave any material you bring with your doctor so he or she can go over it at another time.

If you try to squeeze too much in, you accomplish nothing.

Title: Re: First Neuro appt 2 moro.........advice 4 a New
Post by debOUCH on Mar 16th, 2008, 10:13pm
th=ks so much for the advice on the copies!!! everything is in  categories,(jus a little OCD!! more so, it seems now!!) but now i will make copies of what i would like to leave with him.................thanks so much!!!!!

Title: Re: First Neuro appt 2 moro.........advice 4 a New
Post by Batch on Mar 16th, 2008, 11:25pm
Deb,

Bill hit the nail on the head...  Keep it short and to the point... You are the one in pain...  You want a neurologist that will listen to you and work with you.   What ever treatment strategy he develops, don't take "No" for an answer when you ask for a prescription for oxygen therapy.  The Rx follows:

"Medical O2 at 15 liters/minute with a non-rebreather mask as needed for cluster headache attacks."

V/R, Batch

Title: Re: First Neuro appt 2 moro.........advice 4 a New
Post by brewcrew on Mar 17th, 2008, 7:15am

on 03/16/08 at 23:25:12, Batch wrote:
"Medical O2 at 15 liters/minute with a non-rebreather mask as needed for cluster headache attacks."

And Pete drove the nail home: "As needed" means YOU get to say how much you'll need. In other words, call your medical supply place and tell them how much you want delivered - not the insurance company telling you how much you can have.

Title: Re: First Neuro appt 2 moro.........advice 4 a New
Post by brewcrew on Mar 17th, 2008, 5:24pm
How'd it go?

Title: Re: First Neuro appt 2 moro.........advice 4 a New
Post by debOUCH on Mar 17th, 2008, 9:15pm
went well..was prob with him for a good 45 minutes...............seemed pretty knowledgable and willing to give me what i wanted.....discussed alot and he seemed pretty impressed with my knowledge(tks to you guys)........i opted not to take preventatives, except for elavil that i am going to take @ nite to help me sleep, which could also work as a preventative.......................he gave me samples of imitrex, pills, to use to abort, if necessary.i havent had any hits in 2 days,.maybe done!! i could do the wine test in a few days, but i am scared!!!! i am trying to think positive, tho has happened b4..i need to finish the pred taper, stop the melatonin, and will give me a script for 02...............i am going back to him on monday................so i am going to c wat happens.................thanks for caring!
deb

Title: Re: First Neuro appt 2 moro.........advice 4 a New
Post by Superdave on Mar 17th, 2008, 9:29pm
Hi Deb so glad to see you making progress finally :)

Its been a rough couple of weeks for you and It looks like your on the right path now

Good on ya!

Superdave 8)

Title: Re: First Neuro appt 2 moro.........advice 4 a New
Post by Guiseppi on Mar 18th, 2008, 10:20am
A doc that spent 45 minutes and actually listened to you! Truly worth their weight in gold. Make sure you give the 02 a try or we'll abuse you without let up! ;)

So happy youse is heading in a good direction.

Guiseppi

Title: Re: First Neuro appt 2 moro.........advice 4 a New
Post by debOUCH on Mar 18th, 2008, 10:45am
tks for the notes guys!!! 10mg of elavil actually gave me 9 hrs of sleep, with only 1 wake up......................no visits from da beast in 3 days!!! thinking on the positive side that maybe it is over, though armed if arrives........................

Title: Re: First Neuro appt 2 moro.........advice 4 a New
Post by Linda_Howell on Mar 18th, 2008, 11:44am

 
Quote:
.i havent had any hits in 2 days,.maybe done!! i could do the wine test in a few days, but i am scared!!!!


 Two days without a hit is great, but it doesn't necessarily mean the end of your cycle.  I'd like to suggest you NOT have that glass of wine....just yet.  Not worth it.

Linda

Title: Re: First Neuro appt 2 moro.........advice 4 a New
Post by debOUCH on Mar 18th, 2008, 12:02pm
tks linda! i am not going to have yet!!!actually 2 damn scared!!!!! will wait.......................

Title: Re: First Neuro appt 2 moro.........advice 4 a New
Post by DennisM1045 on Mar 18th, 2008, 12:09pm
Good job Deb!  I'm happy you found someone who'll work with you and that you learned enough here to be able to take advantage of it.

Awesome news on the O2 front too!  It's my primary abortive.  Takes a bit of practice but is worth the effort.

Imitrex pills won't do much for CH. They take too long to work.  Injections are much better.

Seeing as you've been PF I hope you don't have to use them at all  8)  Get the perscriptions fill either way though.  That way you're prepared incase he makes a return visit.

-Dennis-



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