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Topic: Need to have someone to talk with... (Read 1263 times) |
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Dragnlance
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Re: Need to have someone to talk with...
« Reply #50 on: Feb 14th, 2006, 8:40am » |
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Cynner,
You have my prayers!  (fingers crossed too!!)
I hope all is well, and please keep us informed.
Dragnlance
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Richr8
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Re: Need to have someone to talk with...
« Reply #51 on: Feb 14th, 2006, 5:07pm » |
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on Feb 13th, 2006, 11:17pm, cynner68 wrote:
Good News-Potentially Bad News[/i] thing... 
Good news is she understood and agreed that the Topamax needs to stop. I have been off it for 3 days now (scrip was due to refill, but I opted not to, since I wanted off it anyway). Didn't hurt my arguments any when I kept tripping over words, couldn't remember Dr.s name & had a mild CH hit while I was talking with her. Didn't take her long to reach for the Rx pad and change my meds. On the advice of many here, I asked about Verapamil and she did prescribe for it. She also gave me a scrip for O2! 
The bad news in this visit was that it was immediately followed by yet another MRI. I've been having some pretty intense and troubling episodes of numbness and confusion [b]Could be a side efffect of the Topamax, etc. with this recent bout of HAs. She is very concerned that I may have had-be in danger of having TIAs &/or a stroke. |
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I had the same experience with Topamax though I would add the confusion and numbness to the Topamax side effects as well.
I hope things start to improve for you soon.
Rich
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pf wishes,
Rich
...because yesterday is history and you never know what tomorrow will bring.
"Med free"- A few seeds and lots of O2-LG but not great.
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cynner68
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Re: Need to have someone to talk with...
« Reply #52 on: Feb 14th, 2006, 11:32pm » |
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Thank you all for your kind words and support. I will let you know what I know when I know it... 
As for the tapering off the Topamax, I asked my Dr. about it, but she said that since I had already been off it for a couple days, there was no need to restart just to decrease dosage... I dunno'. I am so glad to be off of it I will just deal with it as it comes up, I suppose.
Started the verapamil (120 mg/day) tonight. I'm keeping positive thoughts that this is gonna be what I needed and things are gonna get better real soon. I know it can take a while to take effect. I'm as prepared for no preventative for a while as I can be. Got my 02, and all my digits crossed!
I will see the doc again in two weeks, so things-and dosages-may change then.
Again, thank you all for the thoughts and prayers. It really does help knowing that there are people out there somewhere that have a true understanding of the pain, fear, frustration and confusion I am going through. I find myself already thinking of this place and all of you as an integral part of my life and the fight against the Dragon.
Wishing you all many, many PFDAN!
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Dragnlance
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Re: Need to have someone to talk with...
« Reply #53 on: Feb 15th, 2006, 9:06am » |
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Here's hoping last night was a better one for you!! 
Dragnlance
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cynner68
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Re: Need to have someone to talk with...
« Reply #54 on: Mar 13th, 2006, 12:35am » |
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Just wanted to stop in and update you on things...
I haven't posted in almost a month...Because HAs have been close to the last thing on my mind!  I have only had three or four attacks since I was here last. The verapamil and melatonin combo seems to be working wonderfully for now! The 02 and maxalt are there for me when the dragon starts growling, and so far, I have been able to keep it from reaching the horrible, screaming, torturous levels I was at a few weeks ago.
Maybe it's coincidence- maybe I am just finally breaking out of this cycle, I dunno, but it has been as close to a miracle feeling as I have had in I-dunno-how-long.
Good news is that my MRI showed no new lesions. Bad news is that the ones I have aren't going away. My blood work came back not so great, though. My Neuro has now referred me to the hematologist and the rheumatologist. Levels on a few things were way off. And the big news that came out of all this was that there is a very good chance I have Lupus. Talk about kicking a girl when she's down! More tests and more questions...
Think happy thoughts...Think happy thoughts...
(It's not working...  I'm very scared right now... )
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