Neurontin and fibromyalgia

My experiences with Neurontin were similar to others here. I was on 600mg a day for couple years and it really did help with fibromyalgia pain! The bad thing is I gained 25 pounds and could not get it off! Then I went down to 200mg and lost 12 pounds immediately so I know it caused my weight gain. Recently I took myself off it completely, wanted to try something else. Haven't lost anymore weight (girlscout cookies keep calling my name) but I have had significant tooth pain! I did not make the connection until a neighbor told me today about neurontin causing tooth pain and I believe it! Since on SSD for fibro I don't have dental insurance but the pain is pretty bad sometimes. I'm tempted to go on it again because nothing else, outside of hydrocodone, has worked on my pain. I'm too afraid of Lyrica so I don't know what I will do!

Hello, I have had severe fibromyalgia, Crohn's disease, Chronic Fatigue Syndrome which put me in the bed for about four years. My pain was so severe, I was put on morphine. They were ready to put the morphine pump in when I just rebelled and put my foot down. I was tired of everyone ruling my life. I was like a zombie but was still in severe pain. When I pulled off the medication, it left me with neuropathy in my feet. I asked the doctor to put me on Neurontin for that. I had no idea how it was going to effect my fibromyalgia. The very first pill I took, I was scared to take it because I am so hyper sensitive. It eased my entire body down and it felt so good. For the first time in such a long time, I had the best nights rest. i had been sleep deprived for years. Since then, the doctor has eased my dose up and I am presently on 1200 mg a day. I am starting to excercise my muscles for the first time lifting cans of soup. I know that sounds funny but I have come from my death bed. I am concentrating so much better. I am working on a home study course and being able to get up very early and go to bed at a good time. I again stress that I sleep so well. The only thing I can see that has happened differently is that my vision has gotten worse. I don't know if it is from that. My pupils are not equal either as someone else has mentioned. I also have had some ringing in my ears but I am taking other medications too and can't say that it is just neurontin that is causing it. I have hope now where I didn't have before in my life. I can't say enough good about what Neurontin has done for me. You have to start out very low on it and gradually go up. Carole

I was given Neurontin to try and help with my fibromyalgia . I was initially given a titration pack to build up the dose until i felt pain relief . I reached the stage where i was taken 1800mg a day (3x600mg) and simply couldn't function properly and still with no pain relief . I literally felt spaced out all the time , couldn't remember where everyday household items belonged , and would regularly have severe memory loss during mid conversation . Nothing seemed to sink in when i was told something . i have started the process of coming off these tablets , i have enough problems without adding to them .

Actually, Neurontin has helped with dysautonomia, fibromyalgia, (I've also got epilepsy, but one neurologist had me on 3600 mg, the other said it's useless).... I'm trying to taper off because of the price - being on disability, I can't afford the 168.00/month (generic),and the assistance companies won't help because my long term disability check looks good on paper, until all of the medical supplies (about 1000.00/month), and rent/utilities (another 1000.00/month- was working when moved here).... just looking for info on safely tapering off of it...if I can't get assistance with it, i can't take it....

i have been on neurontin 4 6 yrs cuz of fibromyalgia and at one point i tried 2 stop it and i tappered off slowly but i started getting very depressed, confused, panic attacks. i was in emergency almost everyday, i jus sat there in a daze with a feeling that somethoing bad was about to happon 2 me, i lost alot of weight from diarrhea everyday. my dr said i think u should go bac on it so i didbut something else i noticed was that when i was off of it my hair was growing in thick and fast but when i went back on it my hair is now falling out, not growing and very damaged no matter how many treatments and or trims i give it!! when i was on it b4 i noticed my hair wasnt growing correctly but i didnt no it was from the neurontin, i thought it might have been but its not listed as a side effect. then i came online and looked it up and hesrd from other people and they all were saying the same thing, that there hair was a mess and falling out or not growing!! i hate this med so much but it helps with my headaches like no other. i recently went on cymbalta and im tappering off neurontin i dont know how it will go but im gonna try.im also finding out that alot of other meds im on could b contributing to this hair issue 2. please feel free 2 send me mail i would love 2 hear other peoples comments bout meds, and 4 anyone with questions bout neurontin i have been on it long enough 2 no the answer.

I have been seeing a psychologist/counselor for anxiety and depression. I have a lot of anger that seems to burst out at times uncontrollably (verbally not physcially). The counsellor reccomended Paxil or Lexapro (for anxiety/depression/some Post Traumatic Stress Disorder symptoms) and had me see a psychiatrist for the prescription. The psychiatrist did not prescribe any of the SSRIs and prescribed Neurontin instead to "even out my moods." I was not very comfortable with him and thought that he may have jumped to some conclusions without truly listening to me. I am on a total of 600 mg (200 mg 3x/day) though I am working up to that level over the next few days. (Right now I'm just taking 300 mg) I've been researching Neurontin on the web and this is the first site I've really found that talks about Neurontin being prescribed for things other than fibromyalgia and pain management. (I do get migraines and he thought the neurontin may help.) I have yet to experience noticable side effects though my back and knees are beginning to hurt. Does this sound like a possible side effect of neuntin? It appears that others have been prescribed Neurontin for the same symptoms (anxiety/anger management) that I've had. I'd appreciate any feedback or contact regarding it. I'm 29, married w/ two children and am homestly quite scared about starting any medication like this. My email is ****** Thanks.

I've taken Neurontin 300 mg at night for fibromyalgia (all over body-aches type of arthritis) to help me sleep. I don't mind the dizziness and it works like a miracle to stop the pain -- but increasingly I have backpain over the kidneys. Am afraid the kidneys are working too hard and failing. Does anybody have experience with this?

I am the person who posted the above message about kidney pain as a bad side-effect of N. use for fibromyalgia -- I use the drug for muscle pain, and to get to sleep at night -- and am at the point of trying to lower the dose, as well as wean myself off of it, before permanent damage can happen to my kidneys (and I hate the brain-fog).

Some research into the chemical and physical effects of the med lead me to believe that it works by helping the kidneys take a certain substance out of the blood stream -- the same way that dialysis works for kidney-failure, so definately Neurontin will affect the operation of the kidneys (see posting on "husband taking it for prostate problems" -- is this because of problems urinating?).

There have NOT been any studies on how Neurontin works -- or dangers/side-effects of the drug --for any other use besides epileptic seizures. If a person is experiencing bad side-effects he or she should immediately contact the doctor who prescibed it and ask for a different med, or for the dosage to be reduced (don't just stop taking it, which is what a lot of people do about bad side-effects -- that could be dangerous.). Such use makes a patient a guiney-pig for research, and the makers of Neurontin have been under attack for aggressively pushing it for what are called "off-label" uses.

If the doctor won't listen to you about this, find another one. IT'S YOUR BODY and no one knows better how you feel inside of it. Also you could experiment with withdrawing yourselve from high levels of the dosage, or asking that the amount of the med in the rx be reduced...fast- withdrawal sometimes causes seizures (as I understand it) and of course you have the complete right to ask a doctor to listen to your symptoms and needs.

Also if you're a person who notices bad effects in a child or a spouse you should make it an urgent project to point the bad effects out to the doctor, to become an advocate for the person who cannot do it. Good luck. JanK in Portland OR (and I am not a doctor, just a person with a lot of experience in surviving the American health system.)

The only FDA-approved use for Neuronin is for muscle-spasm connected pain, with epilepsy. However I have noticed that most of the people who have responded to this side-effect registry take it for other reasons. I -- for example -- use it for fibromyalgia, a type of arthritis characterized by (in my case) whole body aching, something like a bad case of flu. It is similar to Dilantin, and nobody knows exactly HOW it works, except that it helps the kidneys remove Gapentin from the urine, and for that reason is often given to kidney-dialysis patients.
It has its own list of side-effects, and reading these postings will educate you about a lot of them, and it SEEMS to be as dependence-producing as Vicodin and related products, but not officially addictive.
I am concerned that you would be taking Neurontin in addition to Vicodin. Does the amount of Vocodin you now take not manage your pain?
If It were me in this position I would much rather be taking Neurontin than Vicodin, because of the addiction problem, and this might be your doctor's attempt to wean you off of Vicodin, especially if you are needing increasing amounts of Vicodin, a baaaaad sign.
TALK TO YOUR DOCTOR about this! Not a lot is known about the interactions of these two drugs, and in my mind could be possibly dangerous. The Neurontin seems to increase the effect of other medicines, especially the ones in Vocodin. Depending on your particular situation, taking Vicodin and Neurontin at the same time could be good, or life-threatening. Is your doctor going to mnonitor you closely, or are you going to be a guiney-pig? At the least monitor youself and the effects on your body for adding Neurontin -- and insist on starting with the smallest dose of Neurontin possible. I commend you for wanting to find out more before you take what sounds like an unexplained drug.
JanK, Neurontin patient, grandmother, retired Master's level alcohol and drug abuse counselor, First Aid Certified counselor, and elementary education teacher.

Neurontin for IBS:
If "IBS" means "irritable Bowel Syndrome" I have some personal experiences to pass on --
I was already a userid of Neurontin for fibromyalgia -- a condition in which the muscles of the body ache like having the flu all the time -- and the Neurontin wasn't helping a bit with the gut-wrenching cramps and diarrea of IBS.
My doctor prescribed Lomotil --which I DO get in a generic called Lonox -- and only one pill at a time stops the IBS problems, even though at first I was up to 4 at a time (the instructions say to take one pill after every instance of cramps and loose bowels.)
Why don't you ask your doc about this, instead of upping the dose of Neurontin (which hasn't helped my IBS at all). Best wishes -- JanK