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Topic: Went to see the neuro today... (Read 350 times) |
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purpleydog
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Went to see the neuro today...
« on: Mar 1st, 2005, 9:21pm » |
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I saw my neuro today. Got hit while I was in the office talking to the nurse before I saw him. Grabbed my trex out of my coat pocket and used it. I couldn't answer her when she asked how I was doing. I then paced the little room for the next 15 minutes. He came in on the tail end of it. He could see immediately what was going on, he's pretty cool.
He finally gave me vials of trex instead of the stat dose pens, or nasal spray. I told him how I was splitting the shots, and explained that I could get more relief on those days when I'm getting hit 6 - 8 times a day, like right now. He was cool with that, thank goodness.
He also has me on Trileptal (oxcarbazepine) 300 mg twice a day, along with 180 of verap at night. I know that's not much verap, but my blood pressure is low anyway, so we will see. I've been taking the Trileptal for a month at half this dosage, with no change in intensity or frequency, so he wants to double it for a week, then increase as necessary. This is a new med for me. Has anyone else ever used it? It's related to tegretol.
I don't ever expect to get hit, I don't wait for it to happen, so it's a bit of a surprise and a let down when I do get hit. They always come on at the same times around the clock, but I don't watch the clock. In fact, I've had friends here ask me how I'm doing right before I DO get hit, because THEY know it's gonna happen. Weird isn't it?
Well, enough rambling for today. Be well.
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Redd
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Re: Went to see the neuro today...
« Reply #1 on: Mar 1st, 2005, 9:44pm » |
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Well Sis,
I have no clue about that new med of yours. But daymn hun I really wish you would get a break.
Only hit I could ever set the watch by was the one that first came at 2am but then for some odd reason it changed to 3 am and has stayed there. Seems the others will keep a pattern till I get a few days PF then the pattern changes again. Except for that one known wake up call.
Keep us posted dear..and know you are in my thoughts.
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E-Double
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Re: Went to see the neuro today...
« Reply #2 on: Mar 1st, 2005, 10:50pm » |
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What's with us and doctors.....
I got hit right in front of my doctor Thursday too!
Yikes.........
You know my story and my meds......have no experience with your new one though ......
The one thing I found was how it effects Verapamil....From WebMD
Quote:| Verapamil (e.g., Calan)—The effect of these medicines may be decreased. |
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Glad ya got the vials, I'm sure a lot easier.
Tough as nails Sistah!!
Hugs,
Eric
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Mr. Happy
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Re: Went to see the neuro today...
« Reply #3 on: Mar 1st, 2005, 11:08pm » |
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on Mar 1st, 2005, 9:21pm, purpleydog wrote:| I don't ever expect to get hit, I don't wait for it to happen, so it's a bit of a surprise and a let down when I do get hit. They always come on at the same times around the clock, but I don't watch the clock. |
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Alzheimer's is gonna be a breeze for you.
RJ
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purpleydog
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Re: Went to see the neuro today...
« Reply #4 on: Mar 2nd, 2005, 12:21am » |
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on Mar 1st, 2005, 11:08pm, Mr. Happy wrote:
Alzheimer's is gonna be a breeze for you.
RJ |
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I sure hope so. Can't remember to look at the time...or anything else for that matter.
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| « Last Edit: Mar 2nd, 2005, 1:32am by purpleydog » |
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PCMCCK
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Re: Went to see the neuro today...
« Reply #5 on: Mar 2nd, 2005, 1:42am » |
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Tried Tegretol, didn't do anything for me (but then again, neither has anything else). Good luck.
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sandie99
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Re: Went to see the neuro today...
« Reply #6 on: Mar 2nd, 2005, 2:06am » |
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I'm glad your neuro is understanding one.  I do hope that verap won't make you faint, though... 
And I hope that your new med will work!
best wishes,
Sandie
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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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don
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Re: Went to see the neuro today...
« Reply #7 on: Mar 2nd, 2005, 3:59am » |
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Trileptal is an anti siezure med. A lot of Docs go down that road because there has been success with controlling migraines. For CH I have my doubts. I've tried 2 or 3 anti siezure meds and none have been benmeficial in any way at all. If I were you I'd look at ramping up the verapamil.
Quote:| I've been taking the Trileptal for a month at half this dosage, with no change in intensity or frequency, |
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Thayt sounds a little ridiculous. How long does he expect you to wait? You may go out of cycle before you even have an answer. I would start thinking about upping the verap and throwing in a prednisone taper.
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| « Last Edit: Mar 2nd, 2005, 4:03am by don » |
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iwannabeer
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Re: Went to see the neuro today...
« Reply #8 on: Mar 2nd, 2005, 4:44am » |
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Im taking an anti seizure med (carbatrol) and it keeps mine down to mere shadows 90% of the time. I am in a longer cycle now this year by a couple of weeks, and cant help but suspect the drug for causing it. No way to know though, could just be my alzheimers, who knows...what were we talking about..who are you people anyway?.....lol.
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purpleydog
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Re: Went to see the neuro today...
« Reply #9 on: Mar 2nd, 2005, 6:40am » |
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on Mar 2nd, 2005, 3:59am, don wrote:
Thayt sounds a little ridiculous. How long does he expect you to wait? You may go out of cycle before you even have an answer. |
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I have to call him in a week to let him know if the incresed dose is working. Then increase it again. I've been in cycle almost a year, don. If I go out of cycle, that would be great, but I'm beginning to wonder if I'm chronic.
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don
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Re: Went to see the neuro today...
« Reply #10 on: Mar 2nd, 2005, 7:47am » |
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Quote:| No way to know though, could just be my alzheimers, who knows...what were we talking about..who are you people anyway?.....lol. |
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With only 5 posts.
Your a natural for this place. LMAO
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Jeepgun
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Re: Went to see the neuro today...
« Reply #11 on: Mar 2nd, 2005, 12:29pm » |
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 Hang tough, PD!! I hope you get some kind of relief soon, my friend.
-Frank
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alienspacebabe
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Re: Went to see the neuro today...
« Reply #12 on: Mar 2nd, 2005, 3:34pm » |
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Good luck, Chris! I hope this med gives you some well-deserved PF time....
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Gator
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Re: Went to see the neuro today...
« Reply #13 on: Mar 3rd, 2005, 11:34am » |
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Hey Pdawg! I did the Trileptal. No go.
Also did the Tegretol. Not only a no go, but got a major friggin ringing in my ears that has yet to go away and it's been over a month since I quit taking it. It's not as bad as just before I quit taking it, but it still about drives me crazy.
Was prescribed Seroqul next. I suspect the Seroquel was prolonging the ringing in my ears. I just quit taking that as well. Was primarily prescribed for sleep. The first few days I slept great, then my body got used to it and I had to go up a notch. It quit knocking me out about 4 days after I went up to 300mg. 400mg was no different than 300mg for me. Started staying awake half sometimes all night again. So much for Seroquel.
Now only on 200mg Nortriptyline at bedtime. Maybe the damned ringing will stop. I hope this new neuro (#3 in 13 months) at OU Medical Center has a few tricks up his sleeve.
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