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Avatar universal

What side effects did you experience with Neurontin?

My neurologist prescribed Neurontin 600 mg/day (Gabapentin) ) and I'm totally panicked about gaining a lot of weight or being dizzy and not able to work or drive. Please share your experiences with this medication. I had really bad experiences with other medications and I don't want to start with it without knowing what could cause.

I'm feeling numbness on my left thigh for the last 3 days and today I could hardly walk due to pain in all my leg. Feeliing like tingling, warm sensation and pain in my left thigh going all the way to my lower back. He told me Neurontin could help.

My neurologist still can't give me a diagnosis. He doesn't think it's MS and ruled out all kind of weird diseases (Lyme, Citomegalovitus, Sarcoidosis, Miastenia Gravis). He told me today my problems are related to my Thyroid (Hashimoto) but my thyroid specialist called me to say my thyroid is fine and this is a neurological problem. Rheumatologist said it's no Fibromyalgia or RA. So now after all this year seeing all kind of specialists nobody can't find what I have. One doctor blames the other one but nobody wants to give me a diagnosis.

My neurologist doesn't want to order a lumbar MRI for the spine to rule out sciatica and this is the 3rd time in less than a year that I have these flares (numbness and pain only on left side mostly on my leg and my face) and I feel so week that I can barely walk.

My LP showed O-Bands on CSF and serum (not typical for MS). Cervical MRI showed disc bulging and foraminal narrowing on C-5 and C6-7 but looks like my nerves are fine so neurologist told me it was normal. MRI (brain, neck, facial bones, soft tissue, etc) were normal.

Any suggestions, what else can I do to get an accurate diagnosis? According to my neurologist, my reflexes are abnormal, my NCS showed slow nerve conduction in one of my legs and I have balance problems so he really thinks I have a neurological problem but can't find anything. He suggested to go to Mayo Clinic in Rochester, MN. Somebody went there with success? Please share your experiences.
19 Responses
751951 tn?1406632863
I know nothing about your dx journey and have no experience with Mayo, but I will tell you a couple simple things about Neurontin.

First, start it very slowly, and step up the dosage very, very slowly.  If you dive into it, it will give you side effects that will make you quit using it before it has a chance to help you at all.

Secondly, read the Health Pages (look over on that -----> side of the page somewhere to access a listing of them) that talk about treating neuropathic pain.  Pain in the nervous system is different from other pains, like muscle and joint pain or headache.  Neurontin treats neuropathic pain, but it's a different experience from taking a couple of Tylenol when you have a headache.  It takes a while to build up in your system, and for your system to adapt to the drug.

Thirdly, I've read (on this forum) recently that Neurontin doesn't treat numbness.  I don't know about that from personal experience; numbness has rarely been an issue for me.  I know Neurontin's been a Godsend for me in combatting my terrible eye pain.  I think it is supposed to be an anti-seizure drug, but has found much greater use off-label in treating neuropathic pain.  I know that my assorted tremors have been less severe since I've been taking this drug, as well.
Avatar universal
Gabapentin has been found to work for a lot of things. I use it daily. Out of the 13 pills and a shot a day. It is the only one I have kept taking. It was at first used for seizures but they have found that it also works well for neurotic pain, mood stabilizer, and a few other things. At first using it you will feel a little weird but after about a week or two that feeling will go away. When I started using it I drove and was just fine. It isn't like taking a Percocet or anything like that. I absouletley hate taking those kind of pills. I have been on the gabapentin for a year and not notice any weight gain problems. I hope this helps.
751951 tn?1406632863
Oh, I've lost weight since beginning Neurontin, but I attribute that to my wife's urging me to eat better and to my now working in several jobs that involve a little more physical activity and a little less desk work.  I don't think the drug has had much effect, if any, in that area.
Avatar universal
I'd be unhappy with a neuro who wouldn't order a spinal MRI.  Has he told you why?

I'd want every option examined to find out why you have this problem.  I will tell you that many of us have gone thru several neurologists trying to find answers.

Good luck and I hope you get some answers.  Everyone has given you great feedback on Neurontin.  I take 1800mg a day and can't imagine not having it to control my neuropathic pain.
1831849 tn?1383228392
Hi crm - sorry you're having a tough time.

The symptoms you describe can be caused by MS and they can be caused by other things, like foraminal narrowing. If your current neuro can only tell you what it's not, I would look for a neuro who can tell you what it is :-)

As to Neurontin (gabapentin), I currently take 3600mg/day. This is the max dose and as Pastor Dan said, I worked up to it slowly. I take it for neuropathic foot pain. I do not have any side effects from gabapentin. It was not effective all by itself. I also take 50mg/amitriptilyne. Together the two had my foot pain under control for about a year. Now I will be adding Lyrica to the cocktail.

I mention this because you should know that if you don't get relief from just the gabapentin there are other options out these.

Keep us posted.

Kyle
5265383 tn?1483808356
Re:  Gabapentin -- I can't take it.  Nor Lyrica.  I'm one of those super-sensitive to meds types.  At levels of gabapentin that controlled pain, I couldn't drive, or walk without falling over :-P.  I did not notice any increase in appetite or weight increase while on it -- I continued to work out at the gym (cool down had to be ridiculously slow or I'd fall off the treadmill) and lose weight over the six weeks.

Is your neurologist an ms specialist?  I was told by 2 general neuros and an ms specialist (I had no hard neuro findings while at that appointment) that I definitely don't have ms.  However I saw a 2nd ms specialist -- thankfully I was just starting into an episode when the appointment came up so he was able to see what the others had missed (I told them, but history doesn't work as well as abnormal reflexes).  He says that my mri says "not ms" but that something is definitely going on, so he's planning to dig a little deeper than the first guy was willing to go.

I would suggest that maybe a second opinion is in order? Or a first opinion with someone who has expertise in ms?
Avatar universal
Thanks for sharing your experiences. My neurologist is an MS specialist but I will start looking for a second opinion before starting this drug.
667078 tn?1316000935
How long have you been going to the neurologist? It can take years to be diagnosed. It took me two years after my first MRI showed MS lesions. It can take years to get any diagnosis. The problem in the U.S. is medicine is too specialized. Specialist only see what is their specialty. Yes they do blame it on the other specialty. American health care is a mess. You just have to keep pushing. I would say to my doctors "something is not right I do not know what but something is really wrong with me". I at least have a Primary Care Doctor who sees the whole human. hang in there.

What I had to learn was not to worry what the diagnosis was but to treat the symptoms.

Alex
751951 tn?1406632863
Well, Alex, yes, but...

If I knew what's wrong, I might ne abke tobetter fight it.  If you ask me, I should've been on a DMD for the past 3 to 5 years, instead of just treating the pain in my eyes, for instance.  Sometimes that's all we can di,do,  but I will decide when to stop pushing; I don't want lazy docs to do that for me.
Avatar universal
I went to the first neurologist this May and had brain MRI's done in June without any lesions. I remember having flares since October 2010 that I had some rough days with terrible pain in my legs that I couldn't walk and doctors couldn't find any cause for it.
Last year, I had numbness and pain for 2 months (August-October) mostly in my legs.
This year was the worst, numbness and pain started in February and lasted for like 4 months and this time was all over my neck, arms, lower back and leg but mostly on left side of my body. That's why I went to the neurologist but so far no answers.
Now pain in my legs and lower back is coming back really bad again.
I refuse to take any strong medicine without a diagnosis but so far I'm far from there because any doctor have any clue.
At this point, I will try some alternative medicine first:
-A massage from a "Sobador". They are not doctors but they know how to massage your body to adjust all nerves and bones to get rid of pain. I tried one like 7 years ago in LA and after that didn't have back pain for years.
- Biomagnetism. It's a therapy based on magnets that is supposed to find all kind of bacteria, fungus, parasites and viruses present in your body and depending what they find they apply a positive and negative magnet so they can kill whatever they find in only one session. I had some friends who had it and they feel like new. I'm going to Las Vegas in 10 days to try it.

Avatar universal
Hi Kyle, Thanks for your reply.
I talked with my general doctor today and he will refer me to a neurosurgeon to look my spine and nerves with more detail. I don't know if a neurosurgeon it's the right guy but since neurologists couldn't find anything I am willing to try.
I had spine problems since I was a child because one side of my body is like 1/2 inch longer than the other and my hip is not leveled so maybe something is going on in my spine and that's the reason for my pain. I haven't been checked for that in at least 25 years. My doctor suggested to go to a chiropractor or to an orthopedist but I really don't know which doctor is the best to evaluate spine and nerves at the same time so at the end he decided for the neurosurgeon because they specialize in foraminal narrowing.
Avatar universal
Did they order more tests for you to try to rule out MS? Please keep us posted.
Avatar universal
My new neurologist just blamed all my symptoms on my thyroid and said my cervical spinal MRI was fine and didn't need any other spine MRI. But my thyroid specialist told me my thyroid is normal and it's neurological.
It doesn't sound normal to me to have bulging discs and foraminal narrowing in my cervical spine so I'm going for a second opinion now with a neurosurgeon and hope he will order more spinal tests.

Do you have a diagnosis? How and where did you find an specialist to take care of you?
5265383 tn?1483808356
He is redoing my MRI scans with better machines -- my cspine came up clear and I guess based on symptoms he thinks there should be something there.  I'm having Visual Evoked Potentials done. These are in October. Had more blood work with no change to the results I've seen so far, except an increase in creatinine.  Three results are still pending.  He doesn't rush into doing LPs -- but depending on how other tests go that's a possibility too.

Definitely learning patience :-).
1831849 tn?1383228392
Spine and hip are two subjects near and dear to my heart :-) I have a surgically repaired lumbar spine and a metal left hip!

The nerve impingement caused by my spinal stenosis (a cousin of foraminal narrowing) was far more painful and debilitating than my MS has been. As was the arthritis that lead to my hip replacement.

The good news about these kinds of issues is that they can be fixed! I think seeing a neurosurgeon, like the one who fixed my back makes great sense.

Kyle
Avatar universal
Good luck with your new MRI's. Do you know what kind of machine or electromagnetic field strength (Teslas) he recommended to repeat MRI's?
I found out all my MRI's were done with an open MRI machine (0.23 T) and looks like the standard in MS diagnosis is 3T. I'm worried that maybe they didn't find anything because MRI images were not clear enough.
I don't know how doctors can refer you to a MRI place and make you pay thousands of dollars for some MRI's that will no be good enough for diagnosis. This only business. I'm sure they get a commission for all tests they ordered and they don't care at all about the patient. It's frustrating!
Avatar universal
Kyle, you really went thru a lot already. Good that they were able to fix your hip and spine.

I can't imagine myself having hip or spine surgery. I hope I don't need one.
I work as an independent contractor and can't afford to miss one day at work. No work, no pay and I already have enough expenses paying for my own health insurance and all the bills for all these doctors and tests.

5265383 tn?1483808356
I never asked what strength they were ... and don't see a field strength anywhere on the images.  I'm curious though.  The new machines are likely stronger -- bigger hospital.

It does seem like a colossal waste of money to have to now redo them ... thankfully I'm in Canada so it's not out of pocket now -- I've paid into it for last 30 years :-).  

I would be in real trouble if I had to pay for tests since I haven't been working since January.  Just started doing a small part-time thing ... but it sure wouldn't pay for an mri.
Avatar universal
Hospitals normally have better equipment. Good that you don't have to pay for it now. I heard Canada have a great health care system. Good luck!
I asked today the MRI place about MS protocol and they told me doctors didn't ask for MS protocol so they did just a regular MRI. What a waste of money!
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