Those on Neurontin...Side effects?

[Bev G]

Hi all,

I remember that some Board members are on Neurontin... The guy I saw at the pain clinic last week (for ruptured disc/sciatic pain) prescribed Neurontin for the pain...Who knew that might work, but I guess it MIGHT make sense. I still haven't taken though because I am really afraid of this drug. Here's why: A year or so ago my PCP put me on Lyrica---one dose I was bouncing around like a pinball; terrible vertigo, unsafe, really. So I never took it again. I am so scared the same thing will happen with Neurontin.

So, anyone who has experience with it, how did/does it work out for you?

Thanks,

Bev

[KimT]

I've had no side effects and I'm on a hefty dose. 300mg three times a day.

However you are right to proceed with caution. A few years ago, I was prescribed neurontin for my chronic back issues. At that time, I experienced severe dizziness and I quit taking it after a few days. I swore I'd never do neurontin again. The chemo induced neuropathy was bad enough that I was willing to give it another try. No side effects whatsoever this time around. I think you just won't know until you give it a try.

I hope you are able to find some relief for your back pain.

[IceGal]

Good morning, dear Bev!

I was on Neurontin for a couple of months for sciatica, and quite honestly I'm not sure how I survived it. I was on 900 per day, and essentially my response was what I would describe as drug-induced extreme ADD (I had the "attention span of a concussed duckling" as one of my favorite authors words it). It did help somewhat with the pain, but I was taken off of it as I couldn't work with the side effects.

I had to quit driving within a week of starting it, since I couldn't pay enough attention to be safe (I pulled myself off the road after I was driving on the freeway and realized that I was only focussed on trying to read a phone number off a van, and then a sign on a truck, and, oh look, a duck!), although I could navigate walking okay. I was ok with short magazine articles, but couldn't follow a book.

That said, one of my good friends was also on it for the same reason. She's more patient than I am, so she worked with her doc to tweak the dosage to a point where she could function and there was still some pain relief. She finally ended up at 150 per day, and that worked for her.

All I can say is maybe give it a try, with the idea of tweaking the dosage as required. If you start at 100 per day, it might be enough to take the edge off the pain without losing your mind (look, squirrel!).

Wonderful to see you posting and hope that all is getting better for you (and that you get the flippin' sciatica under control).

Hugs,
Laurie

[KimT]

Good morning, dear Bev!

I was on Neurontin for a couple of months for sciatica, and quite honestly I'm not sure how I survived it. I was on 900 per day, and essentially my response was what I would describe as drug-induced extreme ADD (I had the "attention span of a concussed duckling" as one of my favorite authors words it). It did help somewhat with the pain, but I was taken off of it as I couldn't work with the side effects.

I had to quit driving within a week of starting it, since I couldn't pay enough attention to be safe (I pulled myself off the road after I was driving on the freeway and realized that I was only focussed on trying to read a phone number off a van, and then a sign on a truck, and, oh look, a duck!), although I could navigate walking okay. I was ok with short magazine articles, but couldn't follow a book.

That said, one of my good friends was also on it for the same reason. She's more patient than I am, so she worked with her doc to tweak the dosage to a point where she could function and there was still some pain relief. She finally ended up at 150 per day, and that worked for her.

All I can say is maybe give it a try, with the idea of tweaking the dosage as required. If you start at 100 per day, it might be enough to take the edge off the pain without losing your mind (look, squirrel!).

Wonderful to see you posting and hope that all is getting better for you (and that you get the flippin' sciatica under control).

Hugs,
Laurie

LOL! I just spat soda all over myself.

[beth568]

Hi Bev:

From the stories I've heard, experiences with Neurontin seem to be all over the place.

I tried it in December for relief from neuropathic pain. Didn't work for me. I had no issues with dizziness or feeling hyper, but it did cause significant peripheral edema, so my hands and feet were puffy and very, very sore. So then I ended up with the same neuropathy and a new kind of pain, probably because the inflammation put more pressure on my already sad nerves.

It was unpleasant, but I can also tell you that it was pretty easily reversed. I had to taper off the meds gradually (over the course of about a week), and then the edema and the pain were gone. So it might be worth a shot for you - any side effects I've heard about are reversible, and relatively quickly. And you might very well get significant relief from your sciatica. Seems worth a shot to me. I hate the idea of all that discomfort for you!

[kims]

Beth-

I found your post interesting. I am on Gabapentin for neuropathy right now. I have had edema and pain in my hands and feet which I attributed to the chemo treatments. Perhaps I should try to get off the gabapentin and see if I get some relief from the swelling at least.

Thanks!

[Rob in PA]

Bev, I am glad you put this post out there. I have had a bottle of neurontin on my shelf for a week now, for neuropathy, and I am afraid to take it because of the horror stories I've heard about it. My neighbor took it for sciatica and she said it made her neurotic and left her in a daze. Made her afraid of heights and crowds.

My neuropathy is more of an annoyance to me, sometimes borderline painful when cold, and i am hesitant to take this drug. I hope some others respond to Bev's post.

RM

[betsydoglover]

Bev - back in 2005 my onc prescribed neurontin to see if it would help with neuropathy in my infusion arm (no port). (It didn't help at all - cannot remember the dose). But, I had no negative side effects.

A couple of years ago we tried Lyrica (very low dose - 0.25mg once a day) - it is normally a tid drug. She thought it might help with my sleep issues, BUT It spaced me out completely. Absolutely couldn't tolerate it.

I guess my point is that while these drugs are somewhat related, just because you couldn't tolerate Lyrica, does not mean that you won't be able to tolerate neurontin.

Take care,

[Ron50]

Hi Bev,
I was on lyrica years ago. I stopped for three reasons. One was the cost,two was the vertigo and three was that it did not help with the neuropathy or the burning. The main focus since then has been trying to get my protein loss under control. During that time it seems I may have crossed the threshold into diabetes. I had an acute case of pancreatitis,lost my gallbladder and suffered 18 mos of 75mg daily of prednisone. It is a wonder I can produce any insulin. I am on 1000 mg daily of diabex(prescribed for insulin resistance not diabetes). In australia our glucose scale is in mm per litre. 5 mm is the baseline. My fasting levels range from 6.8 to 9.8 . As yet with those levels and taking the diabex I am not considered diabetic. I saw a pain specialist recently for severe neuropathy in my hands and legs plus alkylysing spondylitis in my lumbar spine. He gave me morphine patches which I quickly stopped,narcotics and I just don't get on. He also prescribed neurontin. I was to keep increasing the dose till it worked. I don't agree with the theory that if a certain dose does nothing then trippling it will help. I feel that there should be some sign of improvement before increasing. I got up to 600mg (3x200) for no change so I stopped taking then.I take celebrex and panadol based pain killers .They don't seem to help until I stop then I notice more pain. My kidney problems remain unresolved . I have had three biopsies that show everything is normal. I'll concede that it is with the left kidney as it is the only one they have biopsied. For seven years I have complained of right flank pain. They have blamed my gall bladder ,fatty liver and scar tissue but up till now no one has considered my right kidney may be the cause. If I am still leaking protein by june when i see my nephrologist again I will have some words with him.Hope they can do something with your back Bev. If they come up with anything let me know because my mobility is becoming very restricted,Hugs mate sorry you have so much crap in your life,Ron.

[ike]

bev,

be careful with this drug, husband had shingles and it was prescribed to him for this. he was like a drunk on it, couldn't even walk steady, fell a few times, thank god, in the house, feet swelled with it and all last summer had pneumonia, in and out of hospital several times. doctors made light of neurotin causing pneumonia but he went off the drug and hasn't had pneumonia since. neurotin, in my opinion is no good

[brigita]

I've been on Neurontin (aka Gabapentin) for several years now for my neuropathy at doses upwards of 1800mg/d and have never had any side effects.

[weisssoccermom]

Bev,
Our experiences - both hubby and I have been on it - honestly it was a long time ago. Absolutely HATED that drug. I was very moody on it - agitated might be a better word. I also had the dizziness and that's the one absolute medical problem that scares me the most. I do NOT like the room spinning feeling. Jeff was agitated on the drug - now this won't make sense but it also made him very tired. I know agitated and tired don't sound like they can possibly go together but they did. Hubby has neuropathy so his side effects could have been a combination of the neuropathy drugs & the neurontin. In either case, it didn't do any good - absolutely NO relief from the pain.

Lyrica was better at relieving the pain but....that had it's own side effects - namely extreme drowsiness. I have to tell you I have bouts of severe sciatic pain and neurontin doesn't touch it. However, last year when trying to find something to relieve the facial pain, I was Rxd VOLTAREN gel. I wasn't sure it would really do anything but man does that stuff work! Fairly quickly I might add. I'm not sure if it would touch pain caused by a ruptured disc but it has helped relieve my sciatic pain (it certainly isn't constant) and the pain from my severly arthritic knees. There are days when I'd love to just slather that stuff over my entire body. Hubby had disc surgery in his neck and still has pain - uses the Voltaren and says great results. Just throwing it out there. As for the neurontin - I won't take that stuff again.

Jaynee

[Surroundedbylove]

I'd at least try it.

I had some weight gain on it and it "enhanced" my left over chemo-brain but it DID help the pain. Due to side effects I did end up stopping it as the neuropathy improved BUT when I have more severe neuropathy I do take it again.

SBL