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Neurontin anyone?

KimD592KKimD592 Posts: 435
edited 06/11/2012 - 8:55 AM in Chronic Pain
Prior to leaving the hospital this past weekend, the doctor started me on Neurontin 300 mg three times a day for nerve pain. I'm not noticing any difference yet, but I realize it's way too early to tell. A couple of questions:

1) How long does it generally take to start working, if I'm going to notice a difference?

2) What is the max dosage? As I said, I'm currently taking a total of 900 mg per day.

3) How long do doctors generally wait before they increase the dosage?


  • Kim,

    It might take up to 7 days for the medications to get in your system. I used neurontin several years ago and was up 2400 mgs a day, but I have seen others here on higher doses. As far as how long it takes to up the medication your doctor and your body will be the guide to that. If you have no luck on neurontin, there are other medications, such as lyrica, cymbalta and many others in the same line. So just be sure to keep a log while taking the medications to see if there is even a gradual change so the doctor can go from there.
  • Kim I hope that it helps you. It is worth a try.

    I asked for it since my PCP had mentiond it to me several months back. I was told by my PM and NS that they have not had any success with Thoracic patients using any of the nerve pain meds.

    They could be wrong- so keep me posted.

  • oh Julie, I pray they are wrong. I NEED something to help! I'm absolutely desperate here.
  • I took Neurotin at the beginning of all my problems, and now I take Lyrica and Cymbalta to try to help with the radicular pain. You just have to try it and see if it works for you. Some meds work better on some people, than they do on others. Hopefully you will get good results with the Neurontin, but it might take a stronger dose. It just depends on your symptoms, and how well your body adjusts to it. Good luck and keep us posted on how you are doing.

  • nearly killed me .be very careful and if you start having water retention and breathing problems see you doctor ASAP .i was ok on them for about ten months apart from the weight gain about 4 stone in as many months {and its hell to shift} personally i hate all the gaba type drugs and taking a drug meant for epilepsy to treat pain worries me ..if they work for you then good but you will almost certainly gain weight .but watch out for water retention and the foggy head don't sign anything important as you may find that you forget what you have done .i sold my 17 thousand pound 4x4 and lost a fortune whilst under the influence of lyrica .never again
    1997 laminectomy
    2007 repeat laminectomy and discectomy L4/L5
    2011 ALIF {L4/L5/S1}
    2012 ? bowel problems .still under investigation
    2014 bladder operation may 19th 2014
  • dilaurodilauro ConnecticutPosts: 9,858
    You would find scores and scores of threads/topics about this.
    Some are very positive, some are negative.

    Personally, I was on lyrica for nerve pain for a while and it seemed to help. However once the dosage was increased I could fall asleep while walking and then my feet and toes started to swell much more than they should ever.

    I switched over to Neurontin, first at 300mg a day, then as high as 2800mg a day. Now I am on 1200mg a day. It has do wonders to help manage my nerve pain.

    There are so negatives to deal with (weight gain, some loss of short term memory), but in the big picture, it has help so much... At least for me.

    I think it would be worth trying
    Ron DiLauro Spine-Health System Administrator
    I am not a medical professional. I comment on personal experiences
    You can email me at: rdilauro@veritashealth.com
  • Thank you for this information, Ron. I'm really hoping it'll help me. I'm on 900 mg per day for now, but I know we have some wiggle room with the dosage. I've been on it for a week now, and so far haven't noticed a difference. BUT, I'm not going to let that discourage me, since I know it can take some time to build up in your system.

    I go back to UPenn on Tuesday to see my NS, so we'll see what he has to say. I'm definitely considering an ESI, which he mentioned while I was in the hospital last weekend.

    This weekend has been a pretty good one pain-wise. Yesterday my mother-in-law took the kids and I was able to lay down all day. I woke up in the morning with a lot of pain, which is unusual for me. However, once the kids were gone I took an oxycodone and laid down. Today I've been sitting with my feet up or laying down all day. We'll see how I feel tomorrow, but maybe the neurontin is starting to work? I guess we'll find out!
  • I've been taking gabapentin for 2 years now. I was at 1800mg/day, but last month decided I wanted to cut down on as many meds as I could, so my doctor lowered the dose to 900mg/day. I was also taking 60 mg of cymbalta, and am now down to 30mg/day. Before, I wasn't so sure if the gabapention was actually helping my pain at all, but have found out exactly how much it actually was! All the nerve pain in my leg, feet, SI joints, neck, arms is so much worse now. Before, the pain in my leg and feet was minimal. Now that I think about it, that pain became a lot better after I started cymbalta last fall (I actually take that for my anxiety, which has helped with greatly as well).

    I didn't really gain any weight with gabapentin, unlike lyrica (gained about 25 lbs within 3 weeks) and the cymbalta made me gain weight as well. I also have never had the grogginess and sleepiness effect from it either. It does take a little while to build up in your system, so I hope that it will help you in the long run. As I've found out, it certainly does help me! Good luck with it.
    APROUD CANADIANveteranButNOTa doctor, my thoughts are my own
  • I was on neuron tin from May 2010 to December 2010. 400 mg- 900 mg/day

    I felt it helping almost immediately. However, it took my brain away. I was then put on cymbalta that didn't help at all. It's a joke. Didn't help nerve pain muscle pain nothing.

    Unfortunately my condition deteriorated be ause my surgeon did not treat me as a patient with a spinal cord injury. And he also missed completely the c2 injury.
    I was finally seen by a spinal cord injury specialist after I went completely paralyzed on may 26,2011. She finally put me on Tegratol. This works wonders. It takes a while to get to the right dose.

    The problem is many doctors will not RX this because it is an anti seizure medication.that has been approved for nerve pain.

    C2 Inc. Tetraplegia (same as quadriplegia) diagnosed May2011
    C5-7 ACDF Sep2010
    C5-7 Inc caused by car accident May5 2010 ruptured c5-7 discs caused moderate to severe compression of spinal cord.
    10/2007accident caused original problems at c 5-7 including pinched nerve c6
  • I've now been on the Neurontin for 8 days. Prior to starting it, I had some diarrhea. However, the diarrhea stopped for a couple of days. In the last week I've had diarrhea on and off nearly every day. TMI: today I've already been in the bathroom 4 times in the past 2.5 hours. I read in the brochure that came from the pharmacy that diarrhea is a possible side effect. I'm VERY sensitive to medications, so if it's a possible side effect, it'll likely happen to me. Has anyone had this happen as a result of the Neurontin? If so, does it eventually go away?
  • I just take it at night but it keeps the nervepain twitches at a minimum. It makes me so groggy I could never take it during the day tho. I'm a mess on that stuff. Hope it helps!
  • Here's what I don't get. The disc that is acting up is T7-8. It causes severe left-sided back pain that wraps around my ribcage and to the front. The NS said the disc has gotten larger and is compressing the nerve root but not the actual spinal cord. So what's up with the sciatica? It happens a couple of times a week. Today I have pain that starts at my butt and goes down the back of my left leg. Isn't that what sciatica is? I had an MRI of my lumbar spine prior to having my surgery, and the NS said my lumbar spine looks fine...no disc herniations, stenosis, etc. Is there something else that can cause sciatica? The pain is really bad today. Also, will the Neurontin help with that as well? I'm still only on 300 mg three times a day. The NS said it can take up to two weeks to take full effect.
  • I've been getting a lot of leg pain. Recently, I started to see my chiropractor again. He says that my discs weren't that bad (mild herniation), so the leg pain is from my hips. I have tightness in my hip muscles that are causing referred pain in the legs.

    Recovery from spine surgery creates a lot of stress. I've been under a lot of stress for the last 3 months and apparently holding it in my hips. It's possible that you need a good massage and stretching program to loosen up the muscles in the hips? My chiropractor said that if the hips are tight, then it causes the lumbar to move excessively and possibly creating problems there. Keeping your body flexible is key to a healthy spine. Wish I knew all this earlier! My spine has taken a beating and I'm finally learning the hard way how to prevent further damage. Hope you find the root of your leg pain! :)
    2011 ACDF C5-6 for Spondylosis with Myleopathy
    2012 L4-5 herniated disc and hernated disc at C4/5 2013 Taking Amitriptyline for headaches
  • Hi Everyone,

    We are actually after some advice.
    Our friend is 27 years old and was a nurse but had back and neck pain and had to stop working over two years ago. He started a cleaning business and has been doing that for the last two years. Around 3-4 months ago he started getting severe back and neck pain and it has intensified so much he is almost crippled by the pain. He mobility is limited and at this stage his condition is only getting worst with no solution insight.
    He has seen many specialists but they have no answers only saying they think his nervous system is shutting down.
    I am hoping someone has some advice they could give us as he has gone from a healthy, active 27 years old to a person who is struggling to be mobile. He is starting a 3 week pain management program this week but aside from that they do not seemto be able to offer him anything else at this stage.

    Thank you!
  • I had my appt with the PM doc today. I told him about the new left-sided back pain AND the sciatica, which he does not believe are related. He is baffled as to why I'm in so much pain at my young age, and he feels they should NOT be considering the surgery a success. YES, it fixed the right-sided pain that I was having, but the fact that I developed this new pain only two weeks later cannot be considered successful, in his opinion.

    Anyway, he was reluctant to do an epidural at first, being that I just had the surgery in July. However, I told him that my NS wanted me to have it and showed him the script from my NS, and he was willing to do it. So,they are going to call tomorrow to schedule the appt for that.

    As for the sciatica, he reiterated that my lumbar MRI report stated there was no herniation, stenosis, etc, that would be causing the sciatica. I mentioned to him the fact that the previous NS felt I may have ankylosing spondylitis, and that I'll be seeing the rheumatologist on the 14th for that. He also wants me to have an EMG of my lower extremeties, so that is scheduled for 9/20 with another doctor in the practice. Then, I'll go back for a follow-up appt on 9/26. In addition, he increased my Neurontin from 900 mg to 1200 mg per day.

    So, September is shaping up to be a busy month. I have my rheumy on the 14th, cardiologist on the 15th, EMG on the 20th, PM doc on the 26th, and NS on the 27th, and I'm sure the epidural will be somewhere in between. Oh, and that's on top of training for my new job. I start my regular schedule at work on the 18th.

    I do have a question about the ESI, though. I've had terrible experiences with them, so the last one I had done they did under "sedation." However, the sedation wasn't really sedation in that I was still awake and alert and felt everything. He said they needed me to be awake so I can tell him how my pain was. The thing is, I don't want to be awake for it. I have a huge fear of needles in my back, and I don't want to be aware of what is going on. In addition, the pain I have isn't there when I'm laying down. I only have it after I've been on my feet for at least 5 to 10 minutes. Once I'm laying down for a while, I have very little pain, so I won't even be able to tell him if it worked right away. Do you think I'd be asking too much to ask them to actually sedate me this time?
  • Wow Kim you are a busy girl :)

    My last ESI I was semi consious and then my PM doctor shoved that needle in and I jumped up screaming..... They knocked me out pretty good after that. I have had them both ways and like you I prefer to be completely out however this PM doens't like to do it that way.

    I see my NS on the 26th and the second opinion later this week. I have a dog trial on the 11th and need to go to Fairbanks on the 22nd. I was hoping for a ESI just to get me through it.

    Have you had the flexion/extension xrays on your lumbar spine? I had terrible sciatica that was caused by retrololisthsis (basically instability). Everything looked decent (except for small bulges or rather complete loss of disc height on my lumbar area) but I wasn't getting better. Tons of low back pain before the sciatica ever started. I came to find out that each time I bent over or reached for anything what disc I had left was being shoved into my spinal canal.

    Good luck,

  • No, I've never had those x-rays, but we'll see what happens with this EMG and I'll talk to the PM doc about that. I'm definitely going to ask to be knocked out. As I said, it's not like I can tell them how the pain is anyway, because when I'm laying down, for the most part I feel okay. When I'm standing...now that's a whole different story!
  • I gave anesthesia for many years, and I can tell you tha if your pm doctor needs for you to be responsive he will make the decision that will be in your best interest. There are several blocks that they absolutely need to know they are in the correct spot, so having your input is essential. The anesthesia team has to do abide by his requests. If it isn't important for you to be more awake then the anesthesia team can give you heavier sedation. Luckily, most pm doctors are so quick that even if we do need to be more awake, it is just for a short period of time.

  • I gave anesthesia for many years, and I can tell you tha if your pm doctor needs for you to be responsive he will make the decision that will be in your best interest. There are several blocks that they absolutely need to know they are in the correct spot, so having your input is essential. The anesthesia team has to do abide by his requests. If it isn't important for you to be more awake then the anesthesia team can give you heavier sedation. Luckily, most pm doctors are so quick that even if we do need to be more awake, it is just for a short period of time.

  • The sciatica type pain can also be caused by your SI joints. I have terrible pain that goes from my side, into my buttocks and down the back of my leg. Surprisingly, and SI joint injection sorted that out for me for a couple of months! I'm now going for and RFA in my SI joint in October. To date, with my cervical and lumbar issues, that was the only pain that took me to the ER, it was so bad. I couldn't stand up from the seated position without falling back down again the pain was so sharp. Anyways, just something else to consider. Hope you get your answers in one of your appointments!
    APROUD CANADIANveteranButNOTa doctor, my thoughts are my own
  • Well, I'm going for my epidural injection next Tuesday, the 6th. They are going to do it with sedation, and I'll talk to them about how much sedation when I get there. The last time I had it, they explained to me that they still needed me to be awake in order to tell them how the pain was afterwards. However, my pain is minimal when I'm laying down, so I won't be able to tell them anyway.

    As for the SI joint, that's actually what I suspect is causing my sciatica. I'm going to be seeing a rheumatologist in two weeks to be tested for ankylosing spondylitis (my previous NS felt I may have it). One of the symptoms is sciatica, which originates due to inflammation of the SI joint. More and more I'm thinking my NS was onto something when he mentioned AS.
  • KimD,

    I had many epidurals and injections without being sedated by one of the PMs I was seeing. I finally talked with his PA and then him and told him I wanted to be sedated every time. He then started sedating me. My first discogram was done without any sedation, pain pills or anything and boy did that hurt. The next PM I changed to told me he would sedate me, wake me up each time he needed me to tell him my pain level, the sedate me until the next disc. He gave me the stuff (brain not working now; can't remember the name of it) to make me forget it all, and I did. I asked the nurse in recovery if I could please tell the doctor thank you, and she said I already had about 20 times! So I know it made me forget it very well! It was nice to know that I could go to him for any procedure and not have to endure anymore pain than was absolutely necessary; and forget the pain I did have to feel. God Bless that PM doctor! Glad you are getting your epidural and are seeing another specialist! Don't forget to keep us informed!

  • Thank you, Jan, for sharing this with me! I called the PM doc's office today to ask them about the sedation and how I can make sure they completely knock me out. I am going to an outpatient surgical center to have it done. When I called today they said that they'll talk to me about it when I get there. So we'll see...I hope they will be willing to knock me out completely. I've had too many very unpleasant epidurals, along with the CT myelogram which was absolutely miserable. I swore if I ever allowed them to stick me in the back again, I would need to be out completely.
  • The PM doc increased my dosage of Neurontin from 900 mg to 1200 mg per day as of Tuesday. Today I've noticed my eyes, particularly my left, are really dry yet watery. I'm noticing my left eye the vision is a bit cloudy. I know Neurontin can cause dry mouth, and under the side effects it mentions vision changes such as blurred or double vision. Do you think this could be caused by the Neurontin, or should I give the doc a call next week? I have a history of retinal tears and detachment, so the first thing I thought of when I noticed my vision was cloudy was another tear, as that was my first symptom with the very first tear I had. However, then I realized that my eyes seem really dry and are tearing up quite a bit. Has anyone else experienced this from Neurontin, or is this completely coincidental?
  • I'd like to post a link for you, but most outside links are not permitted as most have advertisements within them. If you google Neurontin, there will be lots of sites that come up that will tell you all the side effects, or call your pharmacist, as they would know as well.
    APROUD CANADIANveteranButNOTa doctor, my thoughts are my own
  • My doctor put me on 100 mg of neurontin just at night, but it seems to be interfering with my sleep and making me wake up more often. It makes me sleepy when I take it, but seems to interfere with my total sleep cycle. I skipped it last night and only woke up once during the night. Tonigt I will try going back on it and compare the differences. The most I will take is 300 mg just at night if I can tolerate it.

    sue in ohio
  • My dr just prescribed it 100mg 3 times a day and so far it is helping. It is too soon to tell but it may be a miracle drug for me. I have been on it for 3 days and it has no side effects for me yet. Time will tell.
  • From what I know...it can be a side effect of Lyrica (though not sure it is listed yet) but unsure on Neurontin but I thought it's a similar drug.

    I'd call your doctor to let him know what you are experiencing.
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