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Neurontin - A Treatment for Chronic Pain

The following contains information from Neurontin-L-FAQ
(Copyright Marilyn Kerr RN 1998-2001, Updated October 27, 2001)

In 1994 the anticonvulsant drug Neurontin, (gabapentin), was approved by the FDA for the control of epilepsy. In 1996 researchers began to find that Neurontin was helpful in illnesses other than epilepsy. Today it is often used as a "pain medication" and is prescribed for most all chronic pain. When Neurontin is prescribed for conditions other than epilepsy it is considered "off-label" use. These conditions include:

· Interstitial Cystitis (IC)
· Fibromyalgia (FMS)
· Chronic Fatigue Syndrome (CFS)
· Multiple Sclerosis (MS)
· Reflex Sympathtic Dystrophy (RSD).
· Myofascial Pain Syndrome (MPS)
· Restless Leg Syndrome (RLS) ***
· Periodic Leg Movement (PLM) ***
· Acute Migraines
· Temporomandibular Joint Dysfunction (TMJD)
· Neuropathic Pain
· Peripheral Neuropathy
· Sleep Dysfunction
· Depression

*** See our column The Princess and the Pea.

Neurontin and Neuropathic Pain

Neuropathic pain involves the nervous system, which is made up of the brain, spinal cord and nerves. Misfiring nerves are responsible for neuropathic pain. Symptoms usually include burning and tingling sensations, muscular pain and weakness, and sensitivity to light touch. "Although chronic pain is not always neuropathic, a lot of chronic pain conditions are now recognized as having a neuropathic component," according to Daniel Carr M.D., medical director of Tuft's New England Center.

Neurontin helps to stabilize misfiring nerves by slowing down neurological impulses traveling from the spinal cord out to the peripheral tissues. There is the probability that Neurontin decreases Substance P activity. Substance P is a neurotransmitter chemical in the pain system that carries pain messages through the nerves and stimulates inflammation. Elevated levels of substance P have been found in IC and FMS patients.

It is believed that Neurontin reduces the over-stimulation of nerve endings in IC patients. According to Dr. Seastrunk, a psychiatrist in Texas, "Neurontin also appears to minimize a focal brain injury in Chronic Fatigue Syndrome (CFS) and Fibromyalgia (FMS) patients."

Presumably, part of the brain's limbic system, the hippocampus may be damaged by stress chemicals (such as adrenaline and cortisol) in CFS and FMS patients. The hippocampus is responsible for controlling the stress response network. It also handles pain signals, routing them from the spinal cord to the brain. The nervous system in CFS and FMS patients is thought to be in a state of hyper-stress. Exposure to stress chemicals may cause the development of chronic pain, as well as, memory and learning problems in these patients. The actions of Neurontin seem to minimize the sympathetic pain.

Neurontin as an Alternative to Opiates

Many doctors are relieved to have another option to treat pain besides opiates. There are several reasons for this. For one thing, opiates are the least effective pain drug for treating neuropathic pain. Another problem is that opiates, such as morphine and Oxy-Contin, need to individualized, because patients have different responses to different opiates. Some opiates may actually over-relax the bladder and cause pain in some IC patients. Of course, there is diversity in response to pain medications in general, but the different responses to opiates appear to be due to genetics (Individualized Response to Opioids, Fibromyalgia Network, July 2002).

One of the most obvious reasons doctors like to have Neurontin as an option is that they are often afraid to prescribe narcotics to their patients. They are either not aware, or do not believe that addiction to narcotics in pain patients is less than one percent (Pain, the Disease, Magazine Desk, December 16, 2001, The New York Times Company). Naturally, doctors are also concerned about the strong side effects that their patients may experience on opiates. (Some chronic pain patients must, however, take Neurontin along with opiates.)

Different Responses to Neurontin

According to Neurontin-L FAQ, Updated October 27, 2001, "there appears to be two types of 'responders' (to Neurontin). (1) Some people have an immediate improvement in stamina and a marked reduction of pain starting Neurontin. (2) Other folks will not obtain similar results until they reach higher doses. And, unfortunately there are people who will not receive any benefit from Neurontin."

The Side Effects of Neurontin

Like all drugs, Neurontin has side effects. The two main side effects are fatigue and edema (water retention). Fatigue is usually controlled by building the dosage of Neurontin slowly, and edema is usually relieved with increased water intake. Other side effects may include dizziness, tremor, nervousness, depression, abnormal thinking, twitching, in-coordination, rhinitis (inflammation of mucous membranes in the nose), dry mouth and throat, coughing, nausea, vomiting, constipation, increased appetite, weight gain, and impotence. However, for some IC patients, there appears to be another side effect.

My Experience with Neurontin

When I tried Neurontin I had an immediate sensation of well-being, perhaps because I am so sensitive to medications. My body felt like it did when I was 10 years old. I felt so light that I wasn't aware of my everyday aches, pains and heaviness. But, after a couple of minutes I began to experience bladder pain, and I was very upset because I wanted the good feeling to last. I was even brave enough, or crazy enough, to try Neurontin again the next night. I did this just in case my bladder reaction was caused by something else, although I usually know the direct correlation. Same thing happened on the second try, but the pain was worse because two irritants in two days in a row further inflamed my bladder.

I was prepared for my neurologist, who prescribed the Neurontin, not to believe me. When I told her that it bothered my bladder, she said "Ms. Sandler this is not possible." "It must be something else bothering your bladder." I told her "that after 16 years of IC I know what bothers my bladder." We agreed to disagree. After all, she's not an urologist. She is a very good neurologist who I hope will help to relieve the sharp pins and needles in my hands and feet.

When I saw my urologist for a treatment to soothe the bladder inflammation caused by Neurontin, I told her about my reaction. She took out her PDR (Physician Desk Referral) to find the fillers in Neurontin. She is always on my side and I love her.

After my appointment I decided to call the drug company, Pfizer, who makes Neurontin. I expected complete cooperation because drug companies must report certain types of drug reactions to the FDA. Pfizer was very interested in my reaction to Neurontin. And, because I knew that there had to be other IC patients with the same problem, I volunteered to find the other patients. The Pfizer representative I spoke with said that they would be very interested in hearing from other IC patients.

I am now on an important mission. I have sent e-mails to the members of an IC support group in Massachusetts, inquiring if anyone has experienced bladder reactions or other side effects with Neurontin. I received two e-mails from patients who experienced bladder pain and/or urinary frequency after they took Neurontin. Their doctors did not believe them.

Because Neurontin is a very important drug for pain, we need other IC patients who have had similar reactions to contact Pfizer. This may make it possible for doctors to accept the fact that possibly the fillers (inactive ingredients) in this medication may hurt some IC patients. Since we all have struggled with doctors who do not believe us when we have reactions in our bladders to medications, this is very important. And, who knows? There may be a chance, if there are enough patients who have had bladder reactions to Neurontin, that Pfizer could reformulate the mediation without the mysterious irritating filler. I would be grateful because I want to be able to take Neurontin.

In the meantime, under my doctor's supervision, I will empty my white capsule (100 mg) of Neurontin into a small amount of water to see if the problem is the gel capsule. And, I hope that those of you who have had a reaction to this drug will call Pfizer and let them know that you have IC. The phone number for Pfizer is 1-800-438-1985 or 1-800-332-1240. I believe that someday, when we read the side effects of a medication in the included insert we will see something like this:

May cause urinary frequency, urgency and bladder pain in interstitial cystitis patients.


· Lie on your side with a folded towel* placed between your armpit and waist. The towel will support your spine.

· Bend the knee of your top leg.

· Grasp your ankle.

· Hold for 5 seconds.

· Repeat on your other side.

· Work your stretch up to 20 seconds on each side…very gradually.

· Avoid arching your back during the stretch.

About The Authors:
Gaye is an author and IC patient & support group leader who has been involved in IC work for years. In 1990 she published "Stretch Into a Better Shape" and produced a stretching and exercise video for IC patients in 1993. She is a specialist in Aston-Patterning movement and muscle re-education.

Andrew has over ten years of clinical and health care management position. He is currently the Administrator of Maison Hospitaliere, located in New Orleans. Andrew holds a Ph.D. in Special Education, a M.A. of Health Adminstration, M.A. of Clinical Psychology.

They welcome your comments and feedback on their articles at: The Sandlers

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