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Topic: Got to see the neuro! (Read 352 times) |
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Superpain
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Got to see the neuro!
« on: Mar 29th, 2004, 7:45pm » |
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I got in early with the neuro today. He was very good! Finally, a doc that knows his shit!
So, I'm starting a 16 day prednisone taper, with 240mg verapimil per day into 480mg per day work up.
He also gave me a statdose pen and 2 refills!
Seeing as how I only paid $165 for the office visit, I basically walked away with extra money!
He also gave me a script for whatever O2 needs I might possibly have, and a script for indomethacin to try after the steroids if the small ones don't go away. And a script for 5 more trex refills...
Got a full O2 tank, and I'm ready! 
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Chris
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PittsburghJoe
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Re: Got to see the neuro!
« Reply #1 on: Mar 29th, 2004, 7:51pm » |
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GOOD for you Chris!
Let us know how you fare with the meds. I feel like a baby compared to what you've been going through!
Best of luck and keep it PF!
Joe
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Nothing worth having comes without some kind of fight. Gotta kick at the darkness till it bleeds daylight. - Bruce Cockburn, "Lovers in a Dangerous Time"
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Lizzie2
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Re: Got to see the neuro!
« Reply #2 on: Mar 29th, 2004, 8:04pm » |
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Sure am glad to hear this Chris!!!
I hope it all works for you. Try to be patient..even though it is darn near impossible, but you have been patient for a long time now.  It is good the doc gave you a pred taper along with the verapamil so that hopefully by the time the pred is done, the verap will be working. I wish you the best of luck!!
Hugz, Lizzie
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Thorns
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Re: Got to see the neuro!
« Reply #3 on: Mar 29th, 2004, 8:28pm » |
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Just curious, what is your dose schedule for the taper. I'm trying to take notes for future visits. I didn't do so hot with my last taper/dose.
Good luck and glad you found someone you can trust!
Thorns
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Lizzie2
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Re: Got to see the neuro!
« Reply #4 on: Mar 29th, 2004, 8:33pm » |
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on Mar 29th, 2004, 8:28pm, Thorns wrote:Just curious, what is your dose schedule for the taper. I'm trying to take notes for future visits. I didn't do so hot with my last taper/dose.
Good luck and glad you found someone you can trust!
Thorns |
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Hi Thorns,
I've never done well with my tapers, either, but I'm about to start an 8 week one this Friday. 80mg for a week and then decrease by 10 mg each week over 8 weeks. I'm hoping this one brings me a little better success!
Good luck!
Lizzie
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Superpain
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Re: Got to see the neuro!
« Reply #5 on: Mar 29th, 2004, 8:43pm » |
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Thanks everyone...
the pred taper goes like this:
days 1-4 1 pill morning, noon, dinner, bedtime
days 5-8 1 pill morning, noon, dinner
days 9-12 1 pill morning, dinner
days 13-16 1 pill morning....
But I'm not even sure what mg they are yet... I need to go pick up the script shortly. I'll update when I find out.
He said it was going to be an "agressive" treatment, so I'm guessing the 10, 20 or 50 mg... I'll let you know.
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Chris
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Thorns
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Re: Got to see the neuro!
« Reply #6 on: Mar 29th, 2004, 8:44pm » |
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on Mar 29th, 2004, 8:33pm, Lizzie2 wrote:| 80mg for a week and then decrease by 10 mg each week over 8 weeks. I'm hoping this one brings me a little better success! Lizzie |
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Holy crap that's high. I was barely able to handle the three days I was at 50 at the begining of my taper. Although it could be that I developed shingles shortly after that--thought I was going to die. Anyway, I hope it works for you. Best of luck kickin' the beast out!
Thorns
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Lizzie2
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Re: Got to see the neuro!
« Reply #7 on: Mar 29th, 2004, 9:09pm » |
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My last one was for just 6 days. 60mg for 2 days, 40mg for 2 days, and 20mg for 2 days. It didn't help me, really. My new doc said that might have been a good enough length for a migraine taper, but not good enough to kick a CH cycle.
Sorry to hear about the shingles!! Not too fun!!
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Melissa
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Re: Got to see the neuro!
« Reply #8 on: Mar 29th, 2004, 9:15pm » |
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Wooohooo Chris! I'm SO glad you got a good doc now that is willing to give you what you need!
Yay!!!!
mel
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Superpain
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Re: Got to see the neuro!
« Reply #9 on: Mar 29th, 2004, 9:31pm » |
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on Mar 29th, 2004, 8:44pm, Thorns wrote:
Holy crap that's high. I was barely able to handle the three days I was at 50 at the begining of my taper. Although it could be that I developed shingles shortly after that--thought I was going to die. Anyway, I hope it works for you. Best of luck kickin' the beast out!
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Well... That's reassuring. 
He gave me the 20mg pred, so that means I'm starting off at 80 too... But only for 4 days.
With all the vitamins, supplements, steroids, meds I'm on now, I practically need one of those scheduled pill box thingies. 
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Chris
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Lizzie2
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Re: Got to see the neuro!
« Reply #10 on: Mar 29th, 2004, 9:36pm » |
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LOL Chris, I have one!! But these days, I just use the same day over and over and fill it with the pills I need throughout the day. I'm not organised enough to fill the whole week's worth!! I can't even remember to get refills of my meds till the very last minute! LOL
Lizzie
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FZfan
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Re: Got to see the neuro!
« Reply #11 on: Mar 29th, 2004, 10:13pm » |
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That's great news Chris. Sounds like it was worth waiting for. Too bad about the $165, but it does sound like a bargain. If it works I'm sure you'll think its the best $165 you've ever spent!
Fingers crossed for ya, bud. Now why doncha have a few hits of o2 to celebrate.
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There is no such thing as a dirty word. Nor is there a word so powerful, that it's going to send the listener to the lake of fire upon hearing it. - FZ
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Superpain
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Re: Got to see the neuro!
« Reply #12 on: Mar 29th, 2004, 10:32pm » |
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Oddly enough, i haven't even had the slightest shadow since the doc visit. Now that I'm all ready to go on the meds and loaded up on abortives my cycle will probably end.
I know that's stupid to say... Everytime I say some dumb shit like that the beast opens a can of whoopass on me. 
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Chris
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Superpain
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Re: Got to see the neuro!
« Reply #13 on: Mar 29th, 2004, 10:35pm » |
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Yeah, and I'm not worried about the $165 at all... Actually, they told me it was going to be $265 for the first visit, and that's what they charged me, then they called me after I'd left the office and told me they overcharged me $100! So I went back and wrote another check, and at that point asked for, and got the extra scripts for the trex and O2.
And considering he sent me out the door with $280 worth of imitrex... That sounds like a bahgin fo me!
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Chris
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buckeyescooter
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Re: Got to see the neuro!
« Reply #14 on: Mar 30th, 2004, 12:00am » |
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Congrats as well.....starting a similar taper myself today.
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| « Last Edit: Mar 30th, 2004, 12:00am by buckeyescooter » |
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Superpain
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Re: Got to see the neuro!
« Reply #15 on: Mar 30th, 2004, 12:12am » |
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Evidently the doc was better than I could've imagined. I haven't even heard the slightest whisper of the beast since the visit. Does anyone else experience that?
It seems like everytime I goto the doc I have a period where it feels like they're just gone...
Of course just about the time I get comfortable with that feeling I get hit in the head with a jackhammer!
Whatever... PF is PF. I'll take as much as I can get.
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Chris
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Superpain
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Re: Got to see the neuro!
« Reply #16 on: Mar 31st, 2004, 2:50pm » |
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on Mar 30th, 2004, 12:12am, Superpain wrote:Evidently the doc was better than I could've imagined. I haven't even heard the slightest whisper of the beast since the visit. Does anyone else experience that?
It seems like everytime I goto the doc I have a period where it feels like they're just gone...
Of course just about the time I get comfortable with that feeling I get hit in the head with a jackhammer!
Whatever... PF is PF. I'll take as much as I can get. |
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Well, i had a couple light ones in the early morning hours that night...(yesterday) But I started the prednisone yesterday, and i think it must be working.
I feel like hell. My throat glands are all swollen, my sinuses are fucked(nothing new), my eyes feel all swollen, feels like I have a hangover headache... But I haven't had a cluster for over 30 hrs now!
 
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Chris
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Luke63
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Re: Got to see the neuro!
« Reply #17 on: Mar 31st, 2004, 5:28pm » |
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I AM SO HAPPY MAN...LETS CELEBRATE...But no Drinking!!! And Super..pay attention to your body...ok? You're in heaven it sounds like....kick the Beast..Kick the Beast!!! You really deserve this one bud...seeya....Luke
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FZfan
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Re: Got to see the neuro!
« Reply #18 on: Mar 31st, 2004, 6:27pm » |
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I don't know Supe. I wish for the best, but...
I've had a similar experience to yours a couple of times. I would finally go in to see the doc, get some new meds, then have the h/a's disappear. I would swear we found the right "cocktail". Then several months later, BAM! and the same meds didn't do shit.
Not trying to scare ya, I sincerly hope it's the meds killing it for you, instead of just the natural ending of the cycle.
But I have thought there could be something maybe mental to this. Like the sheer act of going to the doctor and getting new meds can somehow "scare" the beast away.
Just some stupid thoughts. So glad you're getting some relief finally, no matter what the reason.
Now kick that beast while it's down!
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There is no such thing as a dirty word. Nor is there a word so powerful, that it's going to send the listener to the lake of fire upon hearing it. - FZ
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Superpain
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Re: Got to see the neuro!
« Reply #19 on: Mar 31st, 2004, 7:41pm » |
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Yeah, I know what you mean about going to the doc, and they seem to temporarily dissapear.
But I'm pretty sure it's the prednisone... If the cycle ends, so be it... If the length of cycles and remissions are any indication of the future of my cycles, I should be looking forward to a 2+ yr remission this time. So unless I go chronic, I'm not worried about them coming back anytime soon, unless it's just the meds "temporarily" knocking them down. We'll see...
But this day and a half is the longest I've gone without any ha in many months.
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| « Last Edit: Mar 31st, 2004, 7:41pm by Superpain » |
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Chris
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FZfan
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Re: Got to see the neuro!
« Reply #20 on: Mar 31st, 2004, 7:51pm » |
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woo hoo!! See if you can double it!
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There is no such thing as a dirty word. Nor is there a word so powerful, that it's going to send the listener to the lake of fire upon hearing it. - FZ
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Thorns
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Re: Got to see the neuro!
« Reply #21 on: Mar 31st, 2004, 8:08pm » |
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on Mar 29th, 2004, 10:35pm, Superpain wrote:| And considering he sent me out the door with $280 worth of imitrex... That sounds like a bahgin fo me! |
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Yeah my old neuro use to give me 20-30 free imitrex sprays a month when I was in cycle. Man I wish I would have never moved b/c I could really use them now  . Sounds like you found a keeper!
Thorns
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Prense
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Re: Got to see the neuro!
« Reply #22 on: Mar 31st, 2004, 8:31pm » |
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on Mar 31st, 2004, 7:41pm, Superpain wrote:Yeah, I know what you mean about going to the doc, and they seem to temporarily dissapear.
But I'm pretty sure it's the prednisone... If the cycle ends, so be it... |
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Be ready for all hell to let loose about two days after the taper is over.
I do hope it breaks the cycle for you man!
Chris
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sandie99
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Re: Got to see the neuro!
« Reply #23 on: Apr 2nd, 2004, 4:34am » |
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Good for you! A good doc really makes all the difference!
I'm seeing mine this afternoon...
Best wishes & PFdays,
sandie99
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CH happends, Live anyway! PF days to us all!
"Do what you can and let God take care of the rest. Leave your heart wide open and always wish for the best" (Sanna Hillu)
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Superpain
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Re: Got to see the neuro!
« Reply #24 on: Apr 2nd, 2004, 1:13pm » |
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Unfortunately I've had 3 in the last 30 hrs... 
Not real real bad ones, but fairly painful. I knocked em out with 2mg of trex, because I had 4 shots drawn up and wanted to see if it worked. At first I wasn't sure if it was working very well. But after the one this morning I think my body is acclamating to it, and it's getting more effective, quicker.
Anyone know if they'll let you take a statdose on a plane?
Probably not... 
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Chris
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