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Donna_H
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What do you know about Neurontin?
« on: Oct 25th, 2004, 11:45pm »
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Well, my back is pretty messed up.  I've been out of work since 9/11 with 3 bulging discs, severe spinal stenosis, verterbra out of line and just today I found that I have rather severe scoliosis.  I will be doing physical and occupational therapy, as soon as the pain dies down somewhat, to try to prevent the spine from curving more.  I'm taking Neurontin (does anyone think that will help THIS problem?) and more recently Artrotec (which actually does help, but is definately not for women of childbearing age).
 
I'm a bit worried about the Neurontin.  Anyone have any bad experiences (or good) with this drug and what did you use it for other than ch?
 
Added:  My surgeon refuses to operate until I show muscle weakness, etc.  Says it might not help much and isn't worth the risk at my (hurumph) age.
« Last Edit: Oct 25th, 2004, 11:47pm by Donna_H » IP Logged

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Re: What do you know about Neurontin?
« Reply #1 on: Oct 26th, 2004, 12:10am »
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Hi Donna - wow I'm sorry you are going through so much. The PT will help, but it will hurt like a mofo at first. I first used Neurontin as an anti-convulsant and for pain after major brain surgery. I actually started using it for CH on my own in desperation. I didn't have a CH diagnosis yet and the HA's were not related to the surgery and even demerol and percocet wouldn't help. While rummaging through my medicine chest I had some leftover from the surgery and tried it. It actually eased the pain, didn't abort though. I am now on 1800mg a day as a prevent. I've had no side effects except for drowsiness at first. Now I'm on enough to probably put down a horse and can function normally. I've gained some weight, but that is due to a number of reasons. Turning 40 and continuing to eat the way I did at 20, menopause, and a serious chocolate habit...  Undecided
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Re: What do you know about Neurontin?
« Reply #2 on: Oct 26th, 2004, 12:19am »
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Thanks nani, and yes that chocolate will do it every time? LOL.  But it's good for the heart and taste buds.
 
I'm only on 900 mg to start.  Did it give you a flu-like headache?
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Re: What do you know about Neurontin?
« Reply #3 on: Oct 26th, 2004, 12:27am »
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I don't recall. I'm not sure I would have noticed at that time. Between the CH and post op HAs it could have all been a blur... Be careful, though- flu season is starting.
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Re: What do you know about Neurontin?
« Reply #4 on: Oct 26th, 2004, 12:36am »
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Someone else was asking me about this earlier. She is taking Neurontin for leg pain (?)
 
Neurontin is an anti-seizure medication also prescribed for Postherpetic neuralgia (Pain after shingles) and other conditions " as determined by your doctor."
 
I was given this to try a couple of years back for cluster headaches, but the only result I got was a higher  frequency, intensity, and duration of headaches. I had to stop taking it quickly.
 
Hope you have better luck than I did.!.
 
PF WISHES,
Unsolved
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Re: What do you know about Neurontin?
« Reply #5 on: Oct 26th, 2004, 12:40am »
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Dave seemed big on this stuff..........of Dave and Ree.
 
Ask them,
RJ
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Re: What do you know about Neurontin?
« Reply #6 on: Oct 26th, 2004, 11:59am »
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Ex_Pat_Jack was telling me how wonderful Neurontin was last night.  He says doctors do not use it right and that it has to be ramped up quickly and used at very high doses to work for ch.  Anyways, here's the link he sent me. The information on it is at least 3 years old.
 
http://home.tampabay.rr.com/lymecfs/nfaq.htm
 
Here is a drug info site's info on Neurontin.  Looks pretty vanilla.
 
http://www.drugdigest.org/DD/DVH/Uses/0,3915,292|Neurontin,00.html
 
 
Hope any of this helps.
 
 
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Re: What do you know about Neurontin?
« Reply #7 on: Oct 26th, 2004, 12:05pm »
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I had no good results from Neurontin. In fact, after taking it for 2 months, I developed a serious anxiety problem, which I still have 4 years later.
Didn't do jack for the CH's in my case; but everyone responds differently to different meds.
 
Peace,
Carl D
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Re: What do you know about Neurontin?
« Reply #8 on: Oct 26th, 2004, 1:55pm »
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on Oct 26th, 2004, 12:40am, Mr. Happy wrote:
Dave seemed big on this stuff..........of Dave and Ree.
 
Ask them,
RJ
Yes Dave has great luck with this medicine he takes it as a preventative on the first flicker of an attack... last cycle it held them off for 6 months then of course nothing can hold them off and he got wacked but being on the Neurontin has helped lessen the quantity of the attacks.  Not the severity... He starts with 600mg twice a day and then works up to 1800mg a day the doc said 2400 is tops... but he has never used that much... no side effects for Dave...
Cootie is also on this med for her back... ask her too... if you havent already...love to you ree
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Re: What do you know about Neurontin?
« Reply #9 on: Oct 26th, 2004, 3:08pm »
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well, my doc is an idiot... but the other anti seizure drugs where very very bad for me (Topomax and Gabatril), so we are trying neurontin now... But of course fter 5 months now my insurance wont cover it as a generic and as such wont cover the cost over the generic cost so it is too expensive for me to get atm. Gotta talk to the doc on the 8th about it. As far as helping... well I've noticed dick. No change in anything, but then again I am only on 600 mg a day as he is afraid to raise the dose, so that probably has a lot to do with it.  Roll Eyes
 
I hope it helps you, but I really dont see why they are giving it to you for your back. My back has pinched nerves and 2 degenerating disks that are starting to bugle now and never has anyone suggested any anti seizure med for them.  
 
PF Wishes,
-Tia
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Re: What do you know about Neurontin?
« Reply #10 on: Oct 26th, 2004, 5:13pm »
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Maybe I need to try Neurontin...I was put on Trileptal a few weeks ago after the topamax created a bad anxiety problem for me...I am scared of all antiseizures now...The topamax was the only one helping at all but it backfired on me with the anxiety thing...Carl, I can relate to your problem with this side effect....The anxiety thing is a witch to deal with.... smiles,nancyc
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Re: What do you know about Neurontin?
« Reply #11 on: Oct 26th, 2004, 7:22pm »
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I am now on 1800mg a day as a prevent. I've had no side effects except for drowsiness at first. Now I'm on enough to probably put down a horse and can function normally.  
 
 
 
rest easy, if your only on 1,800 mg, its not enough to put down a horse, i would know, im on 3,600 mg a day and still alive and kickin!LOL! i have a different reaction than "normal" people from neurontin, its more of a stimulant for me, no drowsiness at all. side effects are bad though, really effect my short term memory and some sexual side effects that i wont detail here, but their not BAD effects! LOL! i have no idea what else its used for besides chs and seizures but i know so many of the medications i have been put on for chs are used for many other things so i guess if it works... go with it! good luck to ya! ----N
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Re: What do you know about Neurontin?
« Reply #12 on: Oct 26th, 2004, 10:20pm »
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Quote:
really effect my short term memory

 
You know- my short term memory is pretty bad right now. The other day my husband told me he already gave our boy his ritalin. Three hours later I gave it to him! After a call to poisin control, we found out he'd be fine...he's on a pretty low dose, but man- I felt really bad that I completely forgot. Couldn't even recall the conversation when my hubby related it all back to me.Of course I have no idea what's affecting our boy's memory...
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Re: What do you know about Neurontin?
« Reply #13 on: Oct 27th, 2004, 12:45am »
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i used to do the same thing to myself. i used to take my neurontin and about an hour later think "oh shit, i forgot to take my neurontin!" and do it again. i had to buy one of those day-of-the-week pill bottles and keep it filled with the right dose constantly. only problem now is i take oxicontin and clonazepam twice a day and they look almost the same, im always fucking up!! LOL
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Re: What do you know about Neurontin?
« Reply #14 on: Oct 28th, 2004, 12:30am »
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Keeping in mind "everyone is different"......I had bad enuff side effects on Neurontin that I'd like to have an alert necklace made to wear so no one ever gets near me with that stuff again !! Got alot of friends on it.....no side effects....so don't panic. Tried it the first time and was in a controllable 'la-la' land......really bad back and neck flareup was in the makeing and reason my doc wanted me to try it. Was gettin migraines from my neck/spine injury problems. It somehow can be used to keep pain messages lower levels to the brain....or sumthin like that. Anyways.....took it a month or so and had a few side effects start up so doc had me quit it a short while then start back up. It was WORSE that time.....couldn't walk or stand up cuz of no balance control. Would stand and sway and jerk back and forth fightin to stand still and not look like I was blind stinkin drunk or wacked out.....oh it was bad !!!!! My face changed......Brad about freaked.....asked me to NEVER take it in public again ! It scared me te last time I took it....my muscles were sagging and loose.....got huge red blotches on my face. When I stopped takein it I had alot of muscle spasm's and body jerks. I couldn't even talk when I took it the last time. I won't do the surgery bit on my spine and know way too many people that have and have either had several MORE or in worse pain or have more pain. My last MAJOR flareup lasted a YEAR !!! So now I am jus tryin to manage it and KEEP moveing !! Creek crackle and pop Pam
« Last Edit: Oct 28th, 2004, 12:32am by cootie » IP Logged

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