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Author Topic: A new drug, and less pain!!  (Read 7349 times)

moe

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Re: A new drug, and less pain!!
« Reply #30 on: May 04, 2009, 09:44:57 am »
Marci,
The best thing you can do is try to keep going,and try not to surrender.......
Positive thoughts your way...
Keep trudging, keep moving.
I can empathize on the part of just not letting it (whatever IT is) get you down. It is hard some days. And you may wake up and say "Another day to get through." (OH I say that!"
So you like your job but it is stressful?? Can the stress be addressed at work and be brought down a notch???? ???
Hang tough,
maureen
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06/06-Translab 3x2.5 vascular L AN- MAMC,Tacoma WA
Facial nerve cut,reanastomosed.Tarsorrhaphy
11/06. Gold weight,tarsorrhaphy reversed
01/08- nerve transposition-(12/7) UW Hospital, Seattle
5/13/10 Gracilis flap surgery UW for smile restoration :)
11/10/10 BAHA 2/23/11 brow lift/canthoplasty

cindyj

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Re: A new drug, and less pain!!
« Reply #31 on: May 04, 2009, 12:41:57 pm »
Hey, Marci!  So sorry to read that the new pain med is not doing the trick yet, afterall.  Hope it is just that it will take some time to do its magic.  You are such a positive person and so helpful to others, I wish we could help you with this.  Hang in there!  (I say, eat the ice cream, if it makes you feel better ;))

Cindy
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feeling great!

"Life consists not in holding good cards, but in playing well those you do hold."  Josh Billings

MAlegant

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Re: A new drug, and less pain!!
« Reply #32 on: May 04, 2009, 04:24:56 pm »
Thanks.  I've had some longer periods of much less pain so I'm hoping that's a sign the Lyrica is taking effect.  Today I made it until 4pm with very little pain.  That's a huge amount of time for which I was so grateful.  When the pain came I was in better shape to deal with it.  Tonight I'm going for the ice cream again.  Turns out the drug makes me hungry!
Marci
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3cmx4cm trigeminal neuroma, involved all the facial nerves, dx July 8, 2008, tx July 22, 2008, home on July 24, 2008. Amazing care at University Hospitals in Cleveland.

MAlegant

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Re: A new drug, and less pain!!
« Reply #33 on: May 10, 2009, 03:15:47 pm »
Ok, it looks like the medication is working.  I am pain-free most of the day, but still have breakthrough pain at night.  I can't tell you how happy this makes me.  It's like I can breathe again.  And so far, no side effects.  Yay!! ;D
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3cmx4cm trigeminal neuroma, involved all the facial nerves, dx July 8, 2008, tx July 22, 2008, home on July 24, 2008. Amazing care at University Hospitals in Cleveland.

Migoi

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Re: A new drug, and less pain!!
« Reply #34 on: May 10, 2009, 05:11:36 pm »
That's great news about your pain is finding some relieve...here's to hoping the rest of it goes away..

..take care.. tim b
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wendysig

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Re: A new drug, and less pain!!
« Reply #35 on: May 11, 2009, 09:54:25 pm »
Marci,

I'm glad to hear the Lyrica is working and helping you get through the day but sorry to hear you are still having pain at night.  Is Lyrica a drug you have to be on for a month or more before you see the full benefits?  If so, I hope it eventually relieves all of your pain.

Wendy
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Adrienne

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Re: A new drug, and less pain!!
« Reply #36 on: May 12, 2009, 10:14:00 pm »
I'm following this post closely, as I'm interested in how long it takes to 'regulate' the drug into your system to help you have consistently less pain.

I've been taking a low dose of Carbamazepine (Tegretol) for my Trigeminal pain, but am having a hard time with it.  I've only been taking it 'regularly' (meaning every day, twice a day) for about 9 days but have been having some side effects that I could do without.  Dizzy, headaches, nausea, and the worst one-double vision (thankfully, only at times.  More often than not, I'm OK and don't have this one) .  I called my neurosurgeon's office and told them what I'm going through, to see if there was something else I could take for the Trigeminal pain (which incidentally, was feeling much better when I first started taking the drug, but now I have 'break through' pain and I can see it's getting stronger as the days go on.  I'm afraid I'll need to increase my dose), and they told me there are 3 more options: 1) Neurontin, 2) Lyrica, 3) Amitriptylene (sp?)   She warned me that each will have it's own side effects though, so they suggested I just grin and bear it with the one I'm on now.

Let me know when you're having consistent, and pain free days, OK?  I really hope that's started for you already........


Adrienne
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MAlegant

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Re: A new drug, and less pain!!
« Reply #37 on: May 13, 2009, 06:38:16 pm »
Hi,
So now ( 2 weeks later?) I am doing really well.  For the most part, I am not in pain, but I am still in some discomfort which is a piece of cake compared to what I've been dealing with.  I've had a few episodes of breakthrough pain that have required an additional pain pill, but that's still not bad.  For the first time in nine months, I almost feel recovered.  Here's hoping that the numbness continues to recede (so slow) and that feeling returns to my face.  Yes, I want it all.   ;D
Marci
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3cmx4cm trigeminal neuroma, involved all the facial nerves, dx July 8, 2008, tx July 22, 2008, home on July 24, 2008. Amazing care at University Hospitals in Cleveland.

msmaggie

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Re: A new drug, and less pain!!
« Reply #38 on: May 13, 2009, 07:19:47 pm »
God bless you, Marci.  I hope you continue to feel better with each day!  My prayers are with you as you continue on this journey of discovery.  Good days are a real Godsend.
Priscilla
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MAlegant

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Re: A new drug, and less pain!!
« Reply #39 on: May 14, 2009, 05:43:30 am »
Amen to that.
M
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3cmx4cm trigeminal neuroma, involved all the facial nerves, dx July 8, 2008, tx July 22, 2008, home on July 24, 2008. Amazing care at University Hospitals in Cleveland.

wendysig

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Re: A new drug, and less pain!!
« Reply #40 on: May 16, 2009, 04:00:42 pm »
Marci,

I'm glad to hear you 're feeling so much better.  I hope your recovery continues smoothly and that your pain will soon be a thing of the past.

Wendy
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1.3 cm at time of diagnosis -  April 9, 2008
2 cm at time of surgery
SSD right side translabyrinthine July 25, 2008
Mt. Sinai Hospital, New York, NY
Extremely grateful for the wonderful Dr. Choe & Dr. Chen
BAHA surgery 1/5/09
Doing great!

MAlegant

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Re: A new drug, and less pain!!
« Reply #41 on: May 17, 2009, 04:45:32 am »
For those of you keeping score, it's still working!  Still virtually pain-free during the day.  This is good enough for me.
Love,
Marci


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3cmx4cm trigeminal neuroma, involved all the facial nerves, dx July 8, 2008, tx July 22, 2008, home on July 24, 2008. Amazing care at University Hospitals in Cleveland.

Kate B

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Re: A new drug, and less pain!!
« Reply #42 on: May 17, 2009, 07:31:15 am »
Quote from: MAlegant on May 17, 2009, 04:45:32 am
For those of you keeping score, it's still working!  Still virtually pain-free during the day.  This is good enough for me.
Love,
Marci




Awesome news!
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Kate
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