Just by chance I was watching TV last night and they mentioned on the news that there were several lawsuits/class action suits pending against the makers of neurontin - some related to the company's refusal to allow other drug companies to manufacture generic ones (much cheaper prices), others about misrepresenting the drug. I have attached a link. I know neurontin works for a lot of people on this site, but for those that notice problems with it, I thought I would post this, after all, it's only information, we can all decide for ourselves what works and what doesn't - everyone is different.

http://www.legalnewswatch.com/Neurontin_t.html

Joanne

My dose was slowly increased to 600 mg 4X/day, but dropped down to 3X/day to see if my side effect would get better and they did. I was also started on Trileptal slowly increasing my dose to 300mg am and 450mg pm. I think the Trileptal or maybe the combination of the two drugs have helped me the most. If Neurontin doesn't work for you there are other medications that you might tolerate better. I've found that all my medications have taken at least a month to give me noticeable relief and with the second month I noticed the greatest improvement. If you decide to take something else or go back to the Neurontin give it time to work and for the side effect to diminish.

Thanks for the link.

-back pain
-tingly arms/hands ((also, i take it for nerve damage in my hadn so it might be the nerve damage))
-dizziness on occassion
-extreme nervousness, sometimes paranoia
-for a while i ate way too much but i havent gained weight
-im completely unmotivated and sometimes i dont even feel like going out when i used to be out the door at the first opportunity

i cant think of anything more for now

I looked for back pain as a side effect but didn't find any reference to it, but it doesn't mean it isn't related. I made a list of frequent side effects for everyone to read if interested.

Don't hesitate to talk to your doctor about your concerns. Your medication is suppose to help you feel better. You need to decide if the side effects are worth the benefits. You are the only one that knows how you feel so make sure your doctor understands. If your doctor is any good he/she will listen and help you decide what you should do next. Maybe all you need to do is decrease your dose or change to a different medication to feel better. Good luck.

FREQUENT SIDE EFFECTS OF NEURONTIN:

1. Anorexia - Loss of appetite.
2. Anxiety - A state of uneasiness and apprehension.
3. Arthralgia - Is pain in one or more joints.
4. Asthenia - Weakness; lack of energy and strength.
5. Ataxia - Loss of the ability to coordinate muscular movement.
6. Face edema - An excessive accumulation of serous fluid (Swelling).
7. Flatulence - The presence of excessive gas in the digestive tract.
8. Gingivitis - Inflammation of the gums, characterized by redness and swelling.
9. Hostility - To make angry; enrage or provoke.
10. Hyperkinesia - An abnormal increase in muscular activity (Hyperactivity).
11. Hypertension - High blood pressure.
12. Malaise - A sensation of exhaustion or inadequate energy to accomplish usual activities.
13. Nystagmus - A rapid, involuntary, oscillatory motion of the eyeball.
14. Paresthesia - A skin sensation, prickling, itching or tingling.
15. Pneumonia - Inflammation of the lungs.
16. Purpura - Described as bruises resulting from physical trauma.
17. Reflexes increased, decreased or absent - Involuntary action or response.
18. Somnolence - A state of drowsiness, sleepiness.
19. Vertigo - A sensation of dizziness, spinning.

Karen K

ive got at least 10 or 11 and i still have pain :-/ i guess im gonna have to get off it and i thought id be fine easing off it if the doctor controlled it but now im worried

I didn't mean to worry you about coming off it. You are very strong to be dealing with this at 17. When you go to the doctor with your mom, ask if there is something else that you can take to ease the pain while coming off neurontin. The intention is not to get you hooked on more medications, but there might be something else that can help out too.

For example, Elavil is an tricyclic anti-depressant that is also used to manage chronic pain and help sleep with chronic pain. It works well for some people, including myself. I started at 10mg and now am at 100mg. I stopped the neurontin, and my pain levels are the same with or without it.
See what else the doctor can suggest, with minimal side effects. Clearly the neurontin is not a good choice for you. Tegretol is a similar drug, works great for some people (like neurontin does for others), but is hard on your liver.

You have options and rights as a patient to find the best treatment. Come back here and ask questions anytime, get your mom to read around the site with you, so both of you are informed about this stuff.

Hang in there,
Joanne

Karen K

I am so angry.
rc

I have several meds I take to help with my nerve injury. I do the medication cocktail thing. Currently I take Neurontin, Trileptal, (anti-seizure type meds), Effexor (antidepressant) and Ultracet (pain reliever).

Finding the right mix of medications for you may take some trail and error. I have changed my meds several times in the last five months. I expect changes again at my next visit with my doctor. I visited my doctors every few weeks in the beginning and now I'm out to about every six to eight weeks. I think it is important, especially in the beginning, to visit your doctor regularly to follow-up with how you are doing.

I have noticed a decrease in pain level since beginning the Trileptal. My depression and pain have benefited by adding Effexor. When I was switched from Remeron to Effexor my doctor put me on both and slowly decreased the Remeron while increasing the Effexor. Just do things slowly if you can when you change your medications.

Something else to think about is that chronic pain is notorious for causing depression. A few of the side effects listed for Neurontin also can be signs of depression so make sure that is not what you are struggling with too. It isn't anything to be ashamed of or embarrassed about, but it is something that can be treated. Many of the medications for depression are good for nerve injury pain. Dealing with chronic pain is not easy and finding the right mix of medications to help ease your pain can be very stressful.

Your descriptions reminded me of some of the feeling I felt in the beginning of my pain adventure. Your symptoms may be caused by medication, depression or both? It is important to talk with your doctor and figure this out. I had both and I needed to change my meds around a bit to feel my best.

Good luck.

how did you all come about your nerve damage? maybe mines different or something, i dont know, but 600mg/day of neurontin doesnt seem to owrk great

My nerve damage is from a wisdom tooth extraction January 2002.
Karen K

i VERY rarely see my doctor, ive probably seen her 6 times over the last few years, if that and never before 8th or 9th grade

I’ve taken Neurontin for the past 5 ˝ months with minimal side effects. I had fatigue and some arm and leg tingling in the beginning, but these problems seemed to have gone away. It also took some time before I felt benefits from my medications. It usually took me about a month before I felt any benefit and with each dose increase a few more weeks to see the more benefits.

Look on post #3 above and there is a link to some articles about the legal issues. I heard the problem is related to it’s marketing tactics. There is research that validates it's use for neuropathic pain. I’ve found that most of the treatments prescribed for neuropathic pain are for off label uses.

I still think this drug has helped many people suffering from neuropathic pain. I'm one of them, but it did not control all my symptoms. I take Neurontin, Trileptal, Effexor and Ultracet. I think for me the combination of all four drugs has been the most beneficial for me. Each of these drugs were slowly increased to allow my body to adjust to the medication. If the Neurontin doesn't work for you there are several other medications you may tolerate better or by using a combination like I do.

Everyone of us on the site need different medications to help us. I‘ve tolerated my medications very easily, but as you can see some have not been able to tolerate Neurontin. Your treatment needs to be tailored for your needs and it might take some trail and error to find the best medications for you. Don't be afraid to take medications if it will help you function. Pain needs to be control or it gets harder and harder to control.

Like I mentioned above you meds need to start low and slow and work up the same goes with getting off of them. You need to slowly decrease them so you don't have to deal with side effects. I would not have made it without being on medications. The pain was unbearable for me. I'm now doing so much better I can't even describe my joy. I’m not totally pain free, but I can live now. You need to decide what you can and can not live with.

Good luck. "T"

The Nerontin has helped me with my moods but as for the injury not much. I have a nerve block comin up maybe this will help.

The off balance part can be a side effect of Neurontin as it can be for many other meds used for nerve injuries. I was told by my doctor that it is important to move the dosage up slowly to avoid side effects. Some people have more intense side effects then others and some can't take this medication at all. I would definately bring your falls up with your doctor and discuss changing your dosage or your medications all together. Maybe all you need to do is decrease your current dosage down for awhile and move it up slower? Where you falling before starting this medication?

I found most of my side effects dimished the longer I was on this med and that each time my dose was increased I had an increase in side effects for awhile and then they dimished again. Most of the time I was able to go with what the doctor originally RX'd. My last increase I felt terrible. I had fatigue, spacy and couldn't walk in a straight line. I had to call my doc and change how fast it was increased. Once my dosage was adjusted I started to feel better.

Post back with what you do.

Take care.
"T"

"T"

I hope you do well on this new mix. I hope you can tolerate the Neurontin this time. Go slow with it and hopefully the side effects won't be too bad for you.

Your remark about the geriatric ward cracked me up. I can relate to this remark totally. Every week I load my medicine dispensors and as I count out the different pills I wonder what the heck happened. I'm too young for this crap.

Good luck and hang in there.

"T"

Ps to my first message...

I made a bad mistake taking my Neurontin the other day. I didn't wait long enough between doses. Sorta forgot I took it while running around and then took it again when I got home within two hours of each other. Took a total of 2400 mg basically at one time doubling my normal dose of 1200 mg. Duh! Felt stoned, but it wasn't a good kinda stoned. Now this is some bad side effects! I don't recommend doing this. Basically couldn't see straight, couldn't walk, couldn't talk right and my body felt so weak and achy from head to toe I barely could function. My son called poison control to see if I needed to make an ER run. Luckily I didn't because they felt since I handle such a high dose already they figured I could handle this and it doesn't stay in the body for a long time. I felt better in a few hours, but it was rough going for awhile.

Everyone, be very careful taking these meds. They are powerful drugs and if not take correctly can hurt you. This scared me a bit, but looking back I can laugh at how stupid I was now. I was lucky. Make sure your kids can't get to them either.

Everyone hang in there and find your way through this.

"T"

Yeah, I'm wigging out - completely!!! I cannot handle these drugs and to hear you taking those kinda dosages just boggles my mind. I couldn't handle 900mg neurontin A DAY. 300mg 3X a day. Sad isn't it? I was positively incoherent, loopy, and had headaches. An extra 100mg neurontin puts me out for about 12 hours. So I don't even know when I'm going to be able to add it to the walking chemistry experiment that I am as far as my treatment goes. I stopped the old meds and started 200mg Zonegran and yesterday I shook like a little old lady for 3 hours at my desk, I couldn't even hold a pen. And I still have 2-3 more drugs to add to this? And then after they are added get them to a level where the pain is tolerable? I'm so confused, I keep forgetting stuff. Do you know how many times I walked in and out of the bathroom the other night before I remembered why I was there!!!!!? I knew I didn't have to go I just wanted my jammies.

My husband calls my Sybil, he can't keep track of my personalities. The new mantra in our house - We're much more sane than we ought to be.

Karen K

If I remember right I started at 300 mg Neurontin once a day in the evening and worked up to the dosage I'm on know. It was tough getting use to my meds in the beginning. My friends said I acted stoned. I was very loopy for a few months. I just had to take it for a while and see if my body would adapt to it. I was lucky that I was able to tolerate it as well as I did. It may help that I'm not a small woman. Maybe this is one benefit to having a big butt. Hallelujah!

It really sucks that you have such a problem taking these meds. I feel for you. Just with the side effects I've had I can understand how miserable it can be taking these meds.

All I can say is maybe 200mg Zonegran is to high of a dose for you to start with. Talk with your doctor and maybe you can cut back to 100 mg for a month or two. It sounds like you need to go very slowly. It also helps to take the larger doses at night so you can sleep through the worst of it.

I'm thinking of you as you find the meds that will work for you. I didn't mean to make you jealous when I said I take such a high dose. I'm sorry I did that to you. I feel so very badly that you are in pain. I empathize with you and your struggle to control this horrible injury. It really sucks.

I understand the memory lapses too. People tell me something and within five minutes I can't remember what was said or who said it if I remembered it what was said. I do the walk into a room for something and can't remember why all the time. I'm having problems at work focusing and wonder when my bosses will complain. It is so very frustrating, but my pain has finally been controlled to a point I feel alive again. So for me all the side effects are worth it for now. I don't know how long I can stay on these doses but going one day at a time.

Hang in there.

Teresa

Try Trileptal if you can. It worked great for me. It didn't seem to have the same weight gain side effect either.

"T"