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JDH
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Neurontin (non CH)
« on: Aug 22nd, 2003, 11:25am » |
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Has anyone had any experience with Neurontin? I didn’t see anything very recent in the archives but did read that it has been prescribed for CH’s in the past.
I have had chronic sciatic pain for the last 7 years and I’ve been through all the pain meds, pain management and pt but I’ve been told it’s about as good as it’s going to get.
Now my GP wants me to try Neurontin to try and control the pain.
I’m not in a cycle right now and I’m always afraid of starting new scripts for fear of triggering a new cycle.
Just wondering if anyone could tell me what to expect as far as side effects go.
Jim
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HypnoticFreddy
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Yes, I have been taking Neurontin for almost two years. Not for CHs. This drug is a bit contriversial, but it has many uses. Mainly as an anti-convulsant. Also, as my doctor prescribes it for long-term anxiety. I take 1200 mg/day. I believe people go as high as 4800 mg/day though.
Side-effects......I don't get any. But for some I believe it may cause drowsiness, at least initially.
-HypnoticFreddy
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JDH
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Re: Neurontin (non CH)
« Reply #2 on: Aug 22nd, 2003, 1:39pm » |
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Wow, 1200 mg daily? She was talking about starting me at 100 mg @ bedtime and working up from there. Did you start out with a low dose and go up?
Yes the side effects I've been reading about don't look too bad, drowsiness and vertigo seem to be the main problems...I can live w/that if it will give me some relief.
Thanks for the input Freddy.
Jim
Jim
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HypnoticFreddy
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The tablets I have are 600 mg. I believe I started on 300 mg/day. Again, the highest dose I believe prescribed is 4800 mg/day. I am very drug tolerant. I never noticed side-effects. Though when I started.....I was in a different place man. Some people can't tolerate Aspirin. Everybody is different.
I read all the time on here about people who have problems with Verapamil, Topamax, etc. I never had problems with these drugs, and I have been on a lot of stuff. I guess I am sort of lucky, yet unlucky to suffer from eposodic CHs. Good luck with Neurontin.
-HypnoticFreddy
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cootie
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Re: Neurontin (non CH)
« Reply #4 on: Aug 25th, 2003, 11:59pm » |
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wow jus happen ta come over here and see this thread.......do they make neurontin in 100 mg tabs ? I started out on it while back and have had major side effects......but maybe it is jus too strong for me cuz I was started out on 300 mg's at nite.....then twice a day after the first week then 3 times a day after the third week. My problem is I get totally wacked out on it.....very embarrassing when you want to ward off a bad ha and back pain (not ch related) and you end up the party drunk even tho yer not. Had problems standin up and not swayin back and forth...what a struggle to stand up and stay straight......then I stagger when I walk bad. Stuff works tho dam it.....I jus been takein it when I need it.....but this past reaction was bit too much. Break out in a rash real bad too. Maybe I should ask my doc if they have lower doses . Pam that got wazzed out and felt stupid
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| « Last Edit: Aug 26th, 2003, 12:01am by cootie » |
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HypnoticFreddy
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Cootie,
Some info:
• The active medicinal ingredient in Neurontin is gabapentin. Neurontin is available in both capsules (containing 100 mg, 300 mg or 400 mg gabapentin) and in tablets (containing 600 mg or 800 mg of gabapentin).
SIDE EFFECTS
The most commonly observed adverse events associated with the use of gabapentin in combination with other antiepileptic drugs, not seen at an equivalent frequency among placebo-treated patients, were somnolence, dizziness, ataxia, fatigue and nystagmus.
Approximately 7% of the 2074 individuals who received gabapentin in premarketing clinical trials discontinued treatment because of an adverse event. The adverse events most commonly associated with withdrawal were somnolence (1.2%), ataxia (0.8%), fatigue (0.6%), nausea and/or vomiting (0.6%), and dizziness (0.6%).
From my doctor, I know that generally side-effects diminish with time (like many pyschotropic medicine). Interestingly enough, gabapentin is not metabolized in the liver.
-HypnoticFreddy
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cootie
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Re: Neurontin (non CH)
« Reply #6 on: Aug 26th, 2003, 12:26pm » |
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Thanks Freddy......I've tried takein it 3 times now for at least a week or two (3 weeks the first try).....lately I jus been takein it when I felt a meegrainer comein on and extreme back pain but it messed me up so bad last time it was embarrassing plus again I broke out in HIVES real bad on my face and started itchin as I was goin down into my drunk re-enactment routine at the party. I prolly already mentiond this but I had a terrible time jus standing up minglin with people and was swaying back and forth like some sorta hard core drunk....when I'd walk I'd take three steps forward then one back and hoover a sec....ha-ha-ha. I couldn't hide it no matter how hard I tried. Felt like I was gonna get sick several times.....it wasn't a good feeling to have when at a neighbors big party with a band. Brad got a wee bit paturb'd with me and my antics....am thinkin I mite of had extreme side effects and maybe the 300 mg pills are a bit much fer lill ole me ? Got a doc appt for tamarrow and gonna check on either smaller dose or different med cuz this 'JUS AIN'T FLYIN' !! Pam that is prolly now peg'd the neighborhood drunk by mistake 
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HypnoticFreddy
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Uh....Cootie, if I understand you correctly, you are drinking and taking Neurontin? Not right.
Second, this is a kind of medicine that you must take consistently. It is not an abortive. You don't just pop it like an aspirin.
It is primarily an anti-epileptic, so at least you won't have a seizure!
-HypnoticFreddy
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cootie
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Re: Neurontin (non CH)
« Reply #8 on: Aug 26th, 2003, 2:53pm » |
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Freddy....the nurse at the docs office told me ta jus take it when needed or jus at nite and not every day (not sure they always know what's goin on tho exactly).....I wasn't thinkin I'd get a dam ha that nite we was out and had had a few beers earlier (not cool ta mix I know) but I quit when I took the neurontin. That's jus how it worked out and it did fight the ha back ( the spasm's causeing them) from 'momma throw me in fronta the train' effect. It's messed me up either way when I got on it 2 to 3 times a day (I'm only a social drinker so don't think I was drinkin rite along).....was even afraid ta drive. Shit lets face it...I'm jus plain ole wierd Pam
thanks fer the info !
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| « Last Edit: Aug 26th, 2003, 2:57pm by cootie » |
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HypnoticFreddy
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Also, I cannot think of any CH, anti-convulsant, anti-depressant, mood stabilizers, etc drugs that encourage the taking of any alcohol with the medications.
However polydrug use, especially mixing alcohol/benzodiazepines (valium, xanax, etc.) or alcohol/barbituates or alcohol/opiates can pack a nice punch. The mixture of alcohol and barbituates (especially short-acting ones like Secanol) can be quite fatal.
Again, everybody reacts differently to medications.
Me......100 mg Lamictal
200 mg Wellbutrin
1200 mg Neurontin
1 mg Klonopin
2 tokes (hehe)
sometimes 180 mg codeine phosphate
The occasional Mikes Hard Lemonade.
All in a day. And I am fine! 
I am going to go now and frantically scream in the middle of the highway intersection here that I am God.
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cootie
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Re: Neurontin (non CH)
« Reply #10 on: Aug 26th, 2003, 11:29pm » |
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Geeze........you go boy ! Ha-ha-ha....and here I thought you mite be thinkin I am sum sorta bad girl fer takein a neurontin after havein a few beers. Brad did ask me ta never take them again in public......so I'm off to the doc Wednesday...gotta git this figure'd out. Pam that's sicka side effects effects effectin me 
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rumplestiltskin
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As my CH had broken thru my 2 years of 720/day Vera wall...my doc decided to add Newrotten to it. I ramped to 900/day in 3 days. Been doin that fer a month. CH still slippin through. I seem to wanna drose more than ever.
Butt G checked the Pharmaceudickal Insert on it and scared the shit outta me....uh...I'm about to request fuckin that shit...and a Vera holiday to boot.
Tired of eatin pills all day....we'll see.
I may be fucked up and don't know it...
good grief
den
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kim
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Re: Neurontin (non CH)
« Reply #12 on: Aug 27th, 2003, 9:41pm » |
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Neurontin is an anti-seizure PREVENTATIVE med for cluster sufferers. You do not pop them like aspirin. You take a specified dose throughout the day same as you would any other PREVENTATIVE. You should avoid alcohol with this med (same as many other anti-seizure meds)....
It is not a mystery. It is just another potentially lethal drug that us clustersufferers get exposed to and should not take litely.
If taken CORRECTLY Neurontin can (and has) successfully served it's purpose as a PREVENTATIVE for cluster attacks (other maladys I can't speak for). However, if you drink while taking this med you may get a hot and swelled head accompanied by a rash and believe me you will bend and weave like never b4. Similar less severe symptoms can be present without alcohol.
I've taken every godam med out there and neurontin is not the worst. Just like everything else ya gotta pay attention and keep doc lines open.
Coots, you are kinda small. I tend to think you should tawk to doc about maybe too high a dose for small bod. That is what happened to me. I kept smackin up the car and could not remember if i took my pill and was all screwed up on only 900 mg a day - but I was small too. Big people I think can take more with less side effects? Ask doc. I woke up after a week of 900 mg per day and my facewas all red and blothcy? Doc immediately took down to 100mg 3x a day. I weighed about 120 at the time.....food for thought! And, whatever ya do - don't drink beers while taking this med.!!!
Well wishes****
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cootie
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Re: Neurontin (non CH)
« Reply #13 on: Aug 27th, 2003, 10:38pm » |
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Yer rite Kim.......the med really can work....I think with alot of meds docs prescribe a person has ta think about there dose and discuss it with the doc.....maybe the same amount ISN'T rite for everyone....yet alot of meds could work if prescribed correctly even it it means trial and error to find the correct doseage. And I think 300 mg's three times a day for sumone weighin 108 and someone weighin 208 "jus the same" can't always be rite. Normally I didn't drink beer with the med.......but got caught out on the weekend with a bad headbanger comein on "tryin ta rain on my parade" so it kinda went from there....and it'd been a long day too. Talked to doc today and he didn't like the red blotchy face and swellin in hands and feet and face deal. So I'm off that stuff even tho I have talked to 'alot' of people on it recently with NO visible side effects and say it has been great for them. Doc told me taday there is a new form of it bein released soon that is to have NO side effects. (yeah rite.....totally none ?) We talked about jus 100 mg's 3 times a day for me (not ch related) but he was worried bout my bad reaction period. Said not too many have the bad effects so far.........but then there's me !!!! Guess with bipolar docs are prescribeing up to over 4,000 mgs a day and it works where other meds did not.......shewww......that's alot of blotches !!! Pam the girl with the red dots on
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UnsolvedEquation
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Neurontin made my headaches worse ! 
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HypnoticFreddy
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Some more info that may be interesting to y'all
In 1996, research for other purposes began appearing and there has been a quiet revolution of patients and doctors finding that Neurontin is helpful in illnesses other than epilepsy. Neurontin being prescribed for disorders other than epilepsy is called "off-label" use.
Neurontin has a growing multitude of medical studies showing it effective for off-label illnesses such as:
Reflex Sympathetic Dystrophy (RSD),
brain injury,
essential tremors,
sleep dysfunction,
Interstitial Cystitis,
refractory GU tract pain,
agitation secondary to dementia,
muscle cramps,
inflammatory injuries,
tinnitus
phantom limb pain
cocaine dependence
TMJ,
neuropathic pain,
Shoulder-Hand Syndrome,
hemifacial spasms,
peripheral neuropathy,
the pain, nystagmus, and spasticity of Multiple Sclerosis (MS),
trigeminal neuralgia,
prophylaxis and for acute migraines,
for pain secondary to epidural fibrosis,
acute and postherpetic neuralgia (Shingles),
acute pain from Herpes Simplex,
post-operative pain,
myofascial pain (MPS),
radiation myelopathy,
cancer pain
Restless Leg Syndrome (RLS),
Lou Gehrig's Disease (ALS) (but not its progression),
Periodic Leg Movement (PLM),
chronic pain not already mentioned here,
Bipolar Disorder,
social phobias,
somatiform pain with depression,
mood disorders,
both situational and clinical depression,
and it was concluded in one study that gabapentin (Neurontin) "represents a novel class of antihyperalgesic agents" (pain medications) and millions of us have proven that.
It is a unique medication. Again, my doctor swears by it and prescribes it to many of his patients for a variety of conditions.
-HypnoticFreddy
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cootie
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Re: Neurontin (non CH)
« Reply #16 on: Aug 28th, 2003, 9:40am » |
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Unfortunetly people like me gotta be side effects queens......it did seem to work at first but could not tolerate the effects after a few weeks and they got scarey. Hey Freddy do ya know anything about the NEW version of neurontin my doc mentiond comeing out 'soon' ? He said it had little to NO side effects at all....how's that I wonder ? Pam that is a curious neurontin ex user
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HypnoticFreddy
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I looked on Medline and other News databases and I am not finding a "new Neurontin". Of course there are alternatives like lamotrigine (Lamictal). You must give me more information.
-HypnoticFreddy
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cootie
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Re: Neurontin (non CH)
« Reply #18 on: Aug 28th, 2003, 11:04am » |
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That's all doc told me was there was a new version comeing out but not out yet.........so I guess we'll jus have to sit and wait in suspense. Pam that didn't tolerate the stuff well
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JDH
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Re: Neurontin (non CH)
« Reply #19 on: Aug 28th, 2003, 11:23am » |
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OK, I've been taking the Neuronton @ 100mg b4 bed for 4 days now and I can't say that it's doing anything to me at all. Don't notice any side effects or relief.
Guess I'm going to have to tell the doc next week I wanna up the doseage and see what happens. I'll also ask about a newer version.
stay tuned,
Jim
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9-11-01, to remember is to honor.
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cootie
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Re: Neurontin (non CH)
« Reply #20 on: Aug 28th, 2003, 11:32am » |
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I'll tell ya I talked to alot of people on that stuff and high doses and they aren't havein side effects like I had and really say it has helped them. And they were even drinkin alot. Best to up it very slowly if yer gonna nd yer doc says it is ok. Good luck....my doc didn't know when the new version would be out. Pam stagger stumble fall weeble girl when on neurontin
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hdbngr
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Re: Neurontin (non CH)
« Reply #21 on: Sep 5th, 2003, 3:53pm » |
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Neurontin made me feel awful (more so than usual). It was one of the first things prescribed to treat the CH and it kicked in when I was driving home in the car - I didn't know if I was going to be able to drive the rest of the way home or not, I felt so awful I called my mom to come get me. I had to quit taking it. Years later they prescribed it to my mom for Fibromyalgia and she started crying and couldn't stop. She also quit taking it aboout a week later. Potent stuff, whatever it is prescibed for.
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cootie
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Re: Neurontin (non CH)
« Reply #22 on: Sep 5th, 2003, 4:18pm » |
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I'm not on it anymore....but I guess it is a good med for most people and works...got rid of sum huge lumps in my neck like golf balls (muscle spasms) which doc was thinkin bout biopsy'n there at first and scared me. They were aiding to my migraine attacks from spine mess up. Not heard no more bout the new version of the med tho. So anyhow.....I had to stop takein it....also had a problem drivein home when it kicked in not long ago.....now were jus goin with heavy dute pain meds "off and on" when needed fer back stuff. What's a person ta do Pam !!!
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surfshi
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Re: Neurontin (non CH)
« Reply #23 on: Sep 6th, 2003, 7:27pm » |
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I am so glad that some of us have found relief with neurontin. although it is a shame that when the RX companies began making this stuff, upon their attenpt to market it they also ended up "PERSUADING$$$$" those in charge of it's prescribing... Shame on the drug manufacturer for this, I think they got fined or something... OVER EXPOSED and COMERCIALIZED and some Docs were told this was the stuff for "Just about anything you wan't that the patient is ailed from, within their own reason...SURF
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