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        Cluster Headache Help and Support >> Getting to Know Ya >> Any recommendations for Neuro on LI?
        
(Message started by: debOUCH on Mar 13^th, 2008, 3:06pm)

Title: Any recommendations for Neuro on LI?
Post by debOUCH on Mar 13^th, 2008, 3:06pm

New CH'er..........brain scain fine, GP referred me to neuro........................I live in Holbrook, and she gave me a few teams in Port Jefferson...............anyone ever hear of Bruno & Romano? or Greenwood, Roth, & Sauter? or any one have one they really really like?? Thanks.........all you guys are really my ROCK in all of this.............................................
deb [smiley=hug.gif]

Title: Re: Any recommendations for Neuro on LI?
Post by LeLimey on Mar 13^th, 2008, 3:47pm

Hi Deb,
check with EDouble, he's on LI too. Eric where is Dr Rosen? I know he is in NY now.

(I'm sorry I'm so bad with pm's, I WILL reply but I'm just terrible at remembering! ::) )

How are you doing?
Helen

Title: Re: Any recommendations for Neuro on LI?
Post by debOUCH on Mar 13^th, 2008, 4:01pm

OH, Helen, it's ok. [smiley=hug.gif]............i am just so addicted to this site!!!! it is like my lifeline!!! I feel so relieved my brain scan was fine.......... i have been in touch with Edouble, and also Pm'ed him before......................tapered to 30mg pred on MONday and the BEAST is back like never b4!!! all during nite.................averaging 3 hrs sleep a night, but hell, I AM SO DAMN BEAUTIFUL I DONT NEED MY BEAUTY SLEEP!!!!!LMAO...........................how r u doing? i hope u r having PF days....................................thanks again 4 your ear..............
deb
xo

Title: Re: Any recommendations for Neuro on LI?
Post by brewcrew on Mar 13^th, 2008, 4:13pm

30mg of prednisone is my break point, too. Have you started on some other preventative that is designed to build up in your system while the prednisone tapers off? That's the whole idea behind a prednisone taper - immediate relief while you start taking something else that takes awhile (10 days to 2 weeks) to build up to a theraputic level in your body.

Title: Re: Any recommendations for Neuro on LI?
Post by debOUCH on Mar 13^th, 2008, 4:38pm

brewcrew..........tk u............started @ 40mg for 5 days, no big visits, monday on to 30mg and BOOM!!! i am on for 20 days...tapering to 10mg.....I WILL SURVIVE.....GP ordered the brain scan, and will not prescribe anything else, referred me to neuro's STAT..........just thought i wud put the ? out on here while making appt with one she refered me to....................
tks 4 your reply [smiley=hug.gif]

Title: Re: Any recommendations for Neuro on LI?
Post by brewcrew on Mar 13^th, 2008, 4:53pm

I know you'll survive, silly. But do you see the futility of starting a prednisone taper if there isn't something to replace it once you've gone below your breakpoint? Prednisone isn't going to break your cycle. If your doc won't prescribe some other preventative (Verapamil, lithium, topomax, something like that), then what's going to happen is what's happening right now.

Find that neuro quickly, or find another GP that will prescribe a longer-term preventative.

Title: Re: Any recommendations for Neuro on LI?
Post by debOUCH on Mar 13^th, 2008, 5:16pm

oh, i know.....................i am just trying to think on the positive side, for any good that it may do!!!! LOL...............is there any one you prefer, say your "cocktail" of choice???

Title: Re: Any recommendations for Neuro on LI?
Post by barry_sword on Mar 13^th, 2008, 6:29pm

My cocktail of choice is o2 as an abortive, and 480mg Verapamil daily as a prevent. It takes for me almost 2 weeks before the Verapamil starts to work.
Also, if I need it, I will take a Prednisone taper (I do not like this one at all but it works to stop my hits right away).

I printed off the info on o2 and showed my Neuro and he said yes to the o2 without question. I was his 1st patient for trying o2 and he was impressed with the results.

Hope you find "your cocktail" that works for you. :)

Title: Re: Any recommendations for Neuro on LI?
Post by brewcrew on Mar 13^th, 2008, 7:06pm

My cocktail of choice used to be 480mg of verapamil and 900mg of lithium per day (divided). I haven't taken verapamil in two years because it doesn't play well with little Elvis.

Now I take 6mg of methysergide maleate (Sansert) and the lithium as a preventative. To abort I go straight for the O2 bottle, and if the beast is being particularly stubborn I'll take 2.5mg of naratriptan (Amerge).