Author Topic: NEUROTIN  (Read 5641 times)

Karen

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NEUROTIN
« on: February 12, 2009, 06:56:59 pm »
dOES ANYONE USE nEUROTIN ON AN AS NEEDED BASIS?  i    HAD MY NEURO EYE DOCTOR TELL me that he has some patients use 300mg when they need it   not on an every day basis.  He says they swear it works.  I have days when my face hurts and bothers me more than others, then other times it is tolerable without taking anything.  Just curious if anyone as taken it like that. Karen
Karen
     Surgery 12-17-03, nerve graft 1-04, 3.5 cm, facial paralysis, numbness and no hearing in left ear

yardtick

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Re: NEUROTIN
« Reply #1 on: February 12, 2009, 11:41:54 pm »
Karen,

I take Neurontin 300 mg 3 X a day.  I have a facial neuroma that was debulked Sept 2006.  I have facial pain and headaches.  Some days nothing touches it and other days it is a very dull ache, just enough to let me know the neuroma is still there.  As if I could ever forget  ;)  I've been on the drug almost a year now.  Last summer I did wean myself off with Dr's orders, for me it was disastrous, I spent almost 24 hrs a day in bed for a few weeks.  Needless to say with Dr's orders again I went back on it.  I think it is the type of drug you have to take consistently and regularly.  Have you thought of antidepressants?  I also take Effexor which helps with neuropathic pain. 

Anne Marie
Sept 8/06 Translab
Post surgical headaches, hemifacial spasms and a scar neuroma. 
Our we having fun YET!!! 
Watch & Wait for more fun & games

Pooter

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Re: NEUROTIN
« Reply #2 on: February 16, 2009, 03:55:13 pm »
I believe Capt. Deb uses neurotin also..  If memory serves, she calls it her life saver..  Oh Capt. Deb?!  You there?

Regards,
Brian
Diagnosed 4/10/08 - 3cm Right AN
12hr retrosig 5/8/08 w/Drs Vrabec and Trask in Houston, Tx
Some facial paralysis post-op but most movement is back, some tinitus.  SSD on right.
Story documented here:  http://briansbrainbooger.blogspot.com/

"I must be having fun all wrong!"  - Roger Creager

Larry

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Re: NEUROTIN
« Reply #3 on: February 16, 2009, 04:39:24 pm »
I was on Neurontin 3X300mg per day (have been for about 6 years now) - recently had to increase it to 1500mg per day as my headaches were getting worse. It does help but you need to take it consistantly. If you break the pattern taking the drug, uyour system will have different levels of the drug in it and the benefits will vary. 1500mg does make me tired though but better to be tired and reduced headaches than the alternative. I still get ripping headaches a number of times a week but this is the best drug for me as it is effectively a nerve ending pain relief drug.

laz
2.0cm AN removed Nov 2002.
Dr Chang St Vincents, Sydney
Australia. Regrowth discovered
Nov 2005. Watch and wait until 2010 when I had radiotherapy. 20% shrinkage and no change since - You beauty
Chronologer of the PBW
http://www.frappr.com/laz

Jim Scott

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Re: NEUROTIN
« Reply #4 on: February 16, 2009, 04:45:12 pm »
Karen ~

My wife takes Neurontin and has for many years.  I believe she takes the same dosage as Anne Marie ('yardtick'); 900 mg daily in 3, 300mg doses.  She takes it to treat symptoms resulting from long-term Fibromyalgia.  It has been effective for her muscle pains but it doesn't completely erase them.   Neurontin has a wide variety of possible side effects, which may or may not impact you.  In your case, it might be worth a try to find out it it can be effective.  It's clearly your choice, but I would go with the doctor's recommendation. 

Jim
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

Captain Deb

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Re: NEUROTIN
« Reply #5 on: February 17, 2009, 04:31:25 pm »
I have never heard of neurontin administered this way. Suggest you do a little Googling of "gabapentin" its generic name, before you let anyone prescribe it for you like this. I would also recommend speaking with a good pharmacist whom you trust.

I've been on Neurontin, actually generic gabapentin, for 2 years, 600 2x daily but have taken as much as 2700 mgs a day when I first started taking it. Actually they stat a low dose titration up to a higher dose. At 2700 mgs I could barely function but it seemed to help my headaches.  Now I take a cocktail of Neurontin and Topamax.  They seem to work well together.

Capt Deb
"You only have two choices, having fun or freaking out"-Jimmy Buffett
50-ish with a 1x.7x.8cm.AN
Mid-fossa HEI, Jan 03 Friedman & Hitselberger
Chronic post-op headaches
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Sheryl

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Re: NEUROTIN
« Reply #6 on: February 17, 2009, 06:27:31 pm »
I, also, have never heard of Neurontin being used "as needed".  My husband had surgery for meningioma removal in 2004 and then CK for regrowth in October, 2007.  He started having what they termed focal seizures and started on Keppra and was eventually raised to the maximum dose (3,000 mg a day).  He was extremely dizzy and unbalanced on this and they switched him to Neurontin, 300 mg, three times a day.  He is still having focal seizures and headaches over his eye (? sinus headaches).  When they told him to increase the Neurontin to 1200 mg a day (300 x 4 pills), he once again got extremely dizzy and unsteady.  Now he's backed off to the 900 mg a day (300 x 3 pills) and that symptom has gone away but still the focal seizures which are 4 to 5 minutes of his right hand (corresponds to the left-sided tumor) going numb/tingly/dead/sizzly feeling.  He's getting to the point where he wants to call the neurologist and try something else.  There are so many medications out there and it's just by trial and error that one that works will be found.  Meanwhile the tumor has remained basically stable since the CK although the latest MRI did show part of the tumor with a minimal decrease and part with a minimal increase - so small it wasn't even measured. 
Sheryl
9th cranial nerve schwannoma - like an acoustic neuroma on another nerve. Have recently been told it could be acoustic neuroma. Only 7 mm of growth in 18 years. With no symptoms. Continuing W&W

lacey7

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Re: NEUROTIN
« Reply #7 on: February 17, 2009, 06:45:36 pm »
I'm on Lyrica, which is the same drug as Neurontin.....for fibromyalgia.  I've never heard of it being taken "as needed", either.  I would, as someone suggested, talk to a pharmacist.
I have a question, for anyone on this.  Has anyone had a weight gain on this? 
Take care, Karen.
Lacey
Diagnosed 4/15/08.
AN - 1.4 cm.  Translab surgery 6-26-08.  SPF leak 7-5-08, and went back into surgery 7 -6-08.
SSD left side, after surgery
Dr. LaRoure - Providence Hospital, Southfield, MI.

Larry

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Re: NEUROTIN
« Reply #8 on: February 17, 2009, 07:32:01 pm »
Lacey,

Lyrica is not the same as Neuontin. It's meant to be a new and improved drug to neurontin but it didn't work for me.

Laz


2.0cm AN removed Nov 2002.
Dr Chang St Vincents, Sydney
Australia. Regrowth discovered
Nov 2005. Watch and wait until 2010 when I had radiotherapy. 20% shrinkage and no change since - You beauty
Chronologer of the PBW
http://www.frappr.com/laz

Sheryl

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Re: NEUROTIN
« Reply #9 on: February 20, 2009, 06:37:32 pm »
Since the doctor told my husband if the Neurontin did not work, he would add Lyrica.  So, I'm pretty sure they are not in the same class of medications.
Sheryl
9th cranial nerve schwannoma - like an acoustic neuroma on another nerve. Have recently been told it could be acoustic neuroma. Only 7 mm of growth in 18 years. With no symptoms. Continuing W&W

lacey7

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Re: NEUROTIN
« Reply #10 on: February 21, 2009, 11:04:45 pm »
sorry.
Lacey
Diagnosed 4/15/08.
AN - 1.4 cm.  Translab surgery 6-26-08.  SPF leak 7-5-08, and went back into surgery 7 -6-08.
SSD left side, after surgery
Dr. LaRoure - Providence Hospital, Southfield, MI.

MamaGina

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Re: NEUROTIN
« Reply #11 on: February 22, 2009, 01:05:26 pm »
I am an RN, and have used Neurontin (Gabapentin) for my patients with chronic pain many times.  It is used for nerve pain, so I can see why it would work.  It is also used for antianxiety, antiseizure, and maybe more I'm not aware of.  My grandmother uses it for the post-shingles nerve pain (post herpetic neuralgia) prn (as needed).  I have never tried it, but I'm not against trying anything when I'm in pain.  I use Topamax for headaches (off right now due to pregnancy, and suffering from headaches greatly).  I say, if it works for you stick with it, if not try something else.  Also, it definitely causes sedation, and possibly dizziness. (sometimes side effects like these go away after a little while)  I lose my balance so much already!   :-\
L 3.0 cm AN resection via retrosigmoid approach 10/2000;
CSF leak repair w/mastoidectomy one week later. 
chronic headaches, vertigo, fatigue, facial paralysis, SSD, and more!