If you notice your pain increases you may have to go back on the Neurontin.

Everyone is different, I tried to go off of it and I was in too much pain but I have CIDP not GBS.

Good luck to you, I am glad you have had a quick recovery.

Keep an eye on yourself it is easy to overdo it! 😉

Rhonda

Jennstar74,

Unfortunately for your daughter, Neurontin can take a few days to a couple of weeks to start to show any effect. It is good that the pain is starting to decrease after five days. Give it another week. If the pain is well controlled, then the Neurontin works and she has about the right dose. If the pain is less, then the Neurontin probably works and it would be worthwhile to consider increasing the dose.

Godspeed in finding your daughter pain relief,
MarkEns

Hi all,

Thank you for posting about this issue. My 3 year old was on neurontin when she had severe GBS. She started having visual problems (looks like things are high and far away, small and big at the same time). Our crummy neurologist won’t take the time of day to talk about it with us, but the episodes frighten her and I do not think it is right for that to be happening. It is VERY hard to tell with kids that small, but she has had this problem ever since GBS/neurontin. I cannot tell which it is from and no one will give me the time of day about it. Does anyone else have these visual problems?? I am with you, though, about medication. We hardly give tylenol at our house! I do believe that neurontin is one of the few nerve pain meds and not much else will touch it. I do think there is an alternative but I cannot rememebr its name and I think Neurontin has fewer side effects.

Please tell me if anyone has experienced these visual episodes.

Thanks!
Laine

I was diagnosed Sept. 2009 and have been taking 3,000 mgs of Gabapentin (the generic for Neurontin) a day since I got out of the hospital. The only side effect I notice is a very dry mouth,which many meds produce. It does help me reduce the pain – keep it at tolerable levels I guess I could say.
I was very glad that the Dr. in charge of PT Rehab I was in prescribed it.
As he explained it to me….the drugs I had been given in the hospital drugged my mind to not feel the pain, or much else. Neurontin eases the specific nerve pain I have. That made sense to me, and it has worked very well.

Best of luck in finding what works for you;-)

Hi there

That is the whole challenge around medications. Each individual has to find what works for them. It took me a number of years to find a combination that works for my at the moment.

Personally, I have been taking Neurontin for a number of years for pain — 2700mg/day. I haven’t experienced any real side effects, aside from the normal start-up ones, e.g. sleepiness, etc. It has helped quite abit, in concert with a number of other things, e.g. Tramadol, IVIg and methotrexate. My CIDP is primarily sensory, and extremely painful.

My suggestion is to think about what problems you are trying to solve and ask lots of questions. The other thing is to only try one thing at a time, and give it a chance. Making alot of changes means that you can’t really identify what, if anything is making a difference.

I hope that you are able to find something that works for you.

Cheers
Debs

My advice, take the neurontin… it might take a few weeks to kick in, but the pain relief is well worth it. It will not mask anything, at least from a dx standpoint. I am 7 1/2 years out, & could not last half a day without it; it is the ONLY pain med I take. I was left with very damaged feet, actually lots of neuropathy below the knees, & also some residual hand damage. I remeber the first two years wanting someone, anyone to cut my feet off (wasn’t walking anyways), the pain was that bad. And that was ON the neurontin.

I always got in to a neuro via the ER, but then I was totally unable to walk, couldn’t raise my arms up at all, & had no use of or strength in my hands. I guess it does depend on the severity of one’s symptoms.

Hey Damon

I have been using Neurontin for some years now; and I have had no issues with weight gain. In fact, I have lost quite abit of weight over the last two years -with trying of heaps of different medications.

Neurontin has been really great for me — I take 2700mgs day – 900mgs x 3x/day. It works well in terms of managing the nerve pain; it doesn’t stop the breakthrough stuff, but day to day it works well.

Debs

🙂 Hey Damon

I have been using Neurontin for some years now; and I have had no issues with weight gain. In fact, I have lost quite abit of weight over the last two years -with trying of heaps of different medications.

Neurontin has been really great for me — I take 2700mgs day – 900mgs x 3x/day. It works well in terms of managing the nerve pain; it doesn’t stop the breakthrough stuff, but day to day it works well.

Debs

Nate has been on Neurontin since his diagnosis in the hospital, 18 mos ago. His original Neuro told us that he would need it for the large amount of nerve damage that he had.
It is a nerve pain blocker that has to be in your system all day and it also has to be increased in stages to reach the best amount for each person’s pain.
Nate does not seem to have any particularly noticeable side effects.
His new neuro dr. has increased his Neurontin from 900 a day to 2400 a day.
Is is helping his hands a lot. The pain and shaking was pretty bad before.
Nate has also been put on Tramadol 4 times a day now and that is also helping with his back pain.

Trudy, natesmom

Hi Sylvia,
Had Neurontin durring the recovery time of gbs for my legs because I had tremendous nerve dammage and was told neurontin helps with the pain and repair of the Mylene scheath. (protective covering over the nerves). I hated taking pills and didnt find it helped with the pain so I stopped taking it after a year and am still taking pain meds for my leg pain. Take care

Neurontin is not a pain killer like you would take for a headache. It is a nerve pain blocker. It works through your nervous system.
The drug needs to be in your system on a 24 hr basis to be effective.
Taking 1 or 2 pills a day cannot be very effective.
Nate takes 1500 mg a day and that is even low compared to what some of the others here take. Sometimes I think he needs more.
He also takes Vicodin frequently when his back and legs hurt or his head.
He has not had any noticeable side effects.
Trudy, Natesmom

Ditto with the neurontin! I have been taking it for 5 years now, the first 2 years at 3600 mg a day, 1800 mg a day since then. I haven’t noticed any side effects, except for fatigue. But I now believe that to be more from my muscles that do work having to work harder for the ones that don’t. I have found that if I can sleep 10 hours per night it also helps with the pain. I used to have swollen feet & lower legs the first 2 years, but that gradually got better. As for her hands, use them in any way possible, after 2 1/2 years my hands came around so much. The are not normal, but I rarely even think about them anymore, & can do just about anything I need to do with them.

Definitely ask for neurontin, as now that it has gone generic (gabapentin), it is fairly cheap. Insurance companies often refuse the newer more expensive drugs. But I believe that it has been approved for pain due to damaged nerves.

Hi Joel, It works for me ta king 2400mg a day. I still get some zaps but very few. gg

I have been on neurontin since April of 2002. I initially took 3600 mg for the first 4 months, then tapered down on my own within the next 6 months to 1800, & have remained on that dosage since then. I could not function without it, as my feet would be too terrible to bear the pain. At times I wonder if it contributes to my fatigue, but I am too afraid to try anything new. Maybe it does not work for everyone.

[QUOTE=donettiwanek]Does anyone have experience in stopping neurontin? The doctor changed our med from neurontin 4oomg a day to cymbalta. she stopped neurontin ,cold turkey, and took about 2 doses of the cymbalta and has had stomach ache ever since. I cant seem to keep her in school ( 7th grade) the school keeps calling me to pick her up. she has missed 5 days of school. after the two doses of cymbalta I stopped it because I didnt want anything upsetting her stomach. We took her to the doctor friday and she drew blood ( just a complete blood count and renal panal and everything came back normal) I dont know if this is med related, anyone have any similar experiences???:confused:[/QUOTE]
I tried to go off the neurontin and use cymbalta with poor results. I had stomach problems and felt like I was burning from the inside. Like sunburn and was really tired. also lots of trips to the bathroom for kidneys to unload. I tried it for 2 days and just could not tolerate it. I went back to a larger dose of neurontin and I got okay. Many have had good results with cymbalta, but not for me.

For what it is worth, I also struggled with Neurontin and found out through trials that my body would not accept the medication. Glad to hear the docs are working with you to find a better solution for your child. Take care.

doug

I know I can’t stop taking neurontin, if I am late an hour I can feel the pain in my feet. But I was on 3600 mg in the hospital, then tapered down to 2400 mg after I got home, then down to 1800 mg just a few years ago. My vision is also blurry, but I blame that on the steroids I took for 21 months (also had cataract surgery on both eyes.) If you are wondering whether you need as much just try to taper down little by little; if your pain increases you know you need it.

As far as what kind of CIDP you have I am guessing it is relapsing/remitting. If you have IVIG & get better this would tell you. With the progressive kind, you slowly continue to get worse, no matter what the treatments.
Pam

Pam H.

Hi, I have been taking Neurontin 900mg 3xs per day since Jan. 2006. I feel it helps and would almost think about uping my dose just to see if I can get rid of more of the pain. I do not notice any side effects from that dose.

Take care,
Pam K.

Hi,

I took Neurontin for several years and I believe that it really helped with the pain. The problem I had was that I needed to increase the dosage constantly. After a while, I started to get goofy or goofier than I already seemed to be. My concentration became altered and I focused too intently on small tasks. Once I was hooked on something (e.g., TV or solitaire), I couldn’t seem to break my concentration. I was at 2400mg and told to take more, however, I decided to wean myself off of it gradually. It was very expensive but I got a grant from my clinic so it was free.

Today, I still get very tired–especially if I get upset or emotional, which is good for a very long nap. Also, the pain continues and I try to live with it the best I can. Aspirin is my drug of choice along with a hot shower in the morning and a hot tub soak at night. Otherwise, I can hardly sleep and often wake with my leg muscles burning. It is very difficult to explain to people, especially those who are close to you, that you cannot keep up with them. Most seem to think that if you exercise enough, you will just get better and be back to you old self in no time. When I get very tired, I have an awful gait and it looks as if I am plodding along or that I feel downtrodden. This is often misinterpreted as my being upset or mad about something rather than the fact that I am just having trouble walking. That is when you come to the forum and talk about how you feel. I may not be able to climb mountains anymore, but I can sit in a drift boat and fish or sit in car and travel. I just have to work within my limitation and convince others that they have to do the same. 😀 [FONT=”Comic Sans MS”][/FONT]