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Walking Again

Neurontin for Pain

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Hi Everyone,

Did anyone see the Dateline show this week regarding Neurontin (prescribed for pain) and the lawsuit against Warner Lambert stating that their claim of being good for pain was not true?

I know a lot of amputees use Neurontin (as did I at one point, but found it ineffective).

Unfortunately I missed most of the program, maybe someone has seen it?

Thanks,

WA

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Walking Again,

No I did not see it but I agree with you it was very ineffective on the phantom pains. The only thing it did for me was make me doppy and boy I don't need that. I took myself off of it because I was repeating things, plus when I drove I couldn't remember if I had driven part of the way or I would say did I pass such and such. (that was scary)

Brenda

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I lost my Right Leg below Knee 8 weeks ago. I also had a nail debridment in my left leg with a considerable amount of muscle damage etc. I started on 25mg of Amitryptyline for the nerve damage but found after a week or two that I was getting "electric shocks" in my risidual limb. I was put on a graduated 900mg of Neurontin (gabapentin) and have after 5 weeks very little phantom sensations. My friend however is on a lower dosage and does not seem to gain any benifits from it. I am now phasing out my amitryptiline which is leaving me with a bit of insomnia...... . :)

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At first I tired not taking anything for my phantom pains but that did not last. I took Neurontin for awhile and I found that it worked. I only stopped because I had another accident and just forgot to take it. Once I realized it I was on so many other drugs I figured I should lay off. I have not taken it since. That is not to say I don’t get pains but they do not come as often or are as bad. I spoke to a gentleman who lost his leg in Vietnam and he said that the pains go away over time.

shay

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Guest janey-ney

I have been on the Neurontin for probably about 2 years and have had nothing but success. My phantom pain was like Bez's-mostly the extremely sharp pins and needles feelings that was so bad I actually would jolt from them. Ever since I started the Neurontin I have been fine, and if I do forget to take it I can tell the next day by how quickly the pain comes back.

From all of my experience with the cancer and different meds (I went through treatments for over 12 years), one thing that I did find out is that medication is completely subjective. If it doesn't work for you or you don't like it-find something else. There is no reason to take anything you don't like, are not comfortable with or you don't think is helping!

Janey-ney

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I never realised they kept you on it so long. I don't really fancy taking it for the rest of my days. Has anyone had any success with anything a bit more "new Age"? Hypnotherapy etc?

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Neurontin and other meds are not for everyone our bodies react different to each medication we take. What is good for one person may not be good for someone else. The key is to realize what you can tolerate and what you can't. Tell your dr what you feel and discuse different meds that give you the same results.. You can go to http://www.webmd.com and put in the name of the med and find out if there are any side effects to the drug so you can educate yourself on that as well.. You might want to do that before filling the perscription so you know if you want to get it or not. I do that with a lot of my meds.

Brenda

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Bez,

Go to http://www.heathermillsmccartney.com/forum...?act=ST&f=3&t=4 to read more about my experiences with PLP. I still have PLP and have found that neurontin and EMDR (which is a more holistic approach) has been very helpful for me. I also use a stump sock cover from Canada called Farabloc that I use at night to help me get to sleep which is also a without drugs treatment. I too do not like the idea of taking drugs for the rest of my life.

Here is an article that came out of the February 2002 ACA Communicator Volume 3 No. 1 that is very informative on other different therapy for PLP.

Phantom Pain - An Update

Whenever two or more amputees gather, the conversation sooner or later turns to the subject of phantom pain and what to do about it. Although many scientists have studied phantom pain and much has been written about it, because it is a complicated phenomenon that occurs in the brain and not in the residual limb, scientists have failed to come up with a therapy that successfully eliminates it. What remains are a wide variety of therapies that may or may not help any given individual.

Allan Larson, a below-elbow amputee who is affiliated with the Saskatoon Amputee Support Group, Inc. in Saskatchewan, Canada, has assembled the following excellent list of these therapies. You may want to duplicate this article to distribute to your members.

Acupuncture

Acupuncture is a healing art that has been practiced in China for several thousand years to treat a variety of ailments, including chronic pain. Acupuncture involves the insertion of tiny needles into the skin at specific sites. The needle is then twirled for a few minutes or a low electrical current is applied. It is not fully understood how acupuncture works - the Chinese healing art stresses the energy flow of the Ch'i, or life force, while western medicine suggests it stimulates the production of the body's natural painkillers called endorphins.

Anesthetics: Preoperative: Epidural Blockade

When amputation surgery is performed, whether caused by trauma or disease, the amputee is often in pain before the surgery commences. It is thought that this pain imprints on the brain and creates a "pain path" which then causes phantom limb pain after the limb is removed. By using an epidural, an injection of anesthetic to the spine, usually for a period of 72 hours prior to the surgery, the message of pain is blocked from reaching the brain and creating a "pain path." It has been reported that people who have an epidural blockade prior to surgery experience less pain during the postoperative period, as well as a reduction in the frequency and severity of phantom limb pain. It is also thought that the epidural reduces pain by cutting off the pain messages associated with the surgery, which still register in the brain even though the patient is unconscious.

Postoperative: Local Anesthetic (examples: Lidocaine, Marcaine, Novocaine, Pontocaine, Xylocaine)

These medications act on nerve cells by making them incapable of transmitting pain messages for a short period of time. They may be given as spinal (a small needle into the spinal column, in the lower back), epidural (a small needle and catheter into the spinal column, in the lower or mid-back), by local injection or a wide variety of nerve blocks. These may be used to relieve trigger points and reduce stump pain.

Biofeedback

Advocates of biofeedback feel that phantom pain may happen because of anxiety, which may increase muscle tension and contribute to the pain cycle. "Hyperactive muscles" cause irritation in the cut ends of the nerves in the residual limb. Electrodes are attached to the residual limb which detect when the muscle is tensed and trigger a flashing light or buzzer to provide feedback. Once the amputee has become aware of the muscle tension they learn to relax the muscle. When an appropriate decrease in muscle tension is reached the feedback stops. The focus of this treatment is to teach the muscle(s) how to relax, thereby relieving the pain.

Chiropractic

Some amputees may find relief through chiropractic - which means "treatment by hand. "Chiropractic does not involve drugs or surgery, but instead concentrates on the spine in relation to the total body. Doctors of chiropractic, or chiropractors, specialize in the understanding and treatment of the different parts of the spine: bone (vertebrae), muscles and nerves. When a vertebral joint is not working properly it can create an imbalance which disturbs the nervous system. This can lead to excess strain being placed on other joints, resulting in some form of pain. Through manual adjustment, or manipulation of the spine, chiropractic works to correct misalignments of the spine thus alleviating pain.

Cold

Applying cold to the residual limb may help alleviate some of the discomfort associated with phantom limb pain or muscle spasms. Refreshing coolness can be administered through cold compresses, ice packs or cool baths. Amputees may also wish to try a cooling cream or gel. One newer product available is Biofreeze, which is an analgesic cryotherapy gel made from the extract of a South American holly shrub. Biofreeze creates a cooling sensation within the skin that can last several hours. Another gel, Glenalgesic Blue, is a topical pain fighter for the prompt and temporary relief of muscular aches and pains, containing menthol, alcohol and camphor. [see also Heat.]

Cranial Sacral Therapy

This type of therapy, involving the study of bone and joint misalignment related to the head, has been practiced by many different cultures for thousands of years. Therapeutic touch is applied to the head, and meditation and visualization techniques may also be used in conjunction with cranial sacral therapy. A therapist treating phantom pain may "massage" the missing limb, as well as encourage visualization of the lost limb in an effort to help amputees release any sense of grief, loss or anger towards the missing limb(s).

Desensitization

The nerves in the stump of the amputated limb can be very sensitive, especially directly following the amputation. Not only does desensitization reduce nerve sensitivity, it can also reduce pain and discomfort overall. Rubbing the stump with a piece of terry cloth, gently manipulating the stump manually, tapping the stump, or using a vibrator can all help to desensitize the nerves, alleviating sensation and pain. [see also Massage.]

Dietary and Herbal Supplements

Some amputees have found certain dietary supplements or homeopathic food products help reduce phantom limb pain. Examples of dietary supplements amputees have tried include: potassium;calcium; magnesium, and injections of Vitamin B12. Certain herbal products have also been found useful by some amputees including juniper berries (interestingly called "ghost-berry" by Native Americans). Antioxidants such as Pycnogenol (a pine bark extract sold in Canada as a food product) and Grape Seed Extract are extremely concentrated bioflavonoids, which until 1936 were known as Vitamin P. Antioxidants attack free radicals, which are unstable atoms inside our bodies that attack all body tissues, degrade collagen and reprogram DNA. Free radicals are believed to be the underlying cause in many diseases. Antioxidants are found in high concentrations in grape seeds and pine bark, and in lesser amounts in grape skins, cranberries, lemon-tree bark and hazelnut tree leaves. Antioxidants are available in liquid and pill form.

*Amputees should always consult their doctor before taking any supplements or herbs, as these are not harmless, but can have powerful side effects. They may also interfere or conflict with other medications being taken at the same time.

Electrical Stimulation

Another theory behind phantom limb pain suggests that it occurs because the nerves in the residual limb lack the stimulus once provided by the missing limb. One electrical treatment, transcutaneous electrical nerve stimulation (TENS), uses low current at a low-frequency oscillation to stimulate the nerves and provide pain relief. The amputee feels a gentle tingling without increased muscle tension. Depending on the severity of pain, the small-battery operated device can be used for 20 minutes to a few hours of stimulation, several times daily, and the amputee can be taught how and when to apply treatment. Because TENS can cause arrhythmia, it should not be used by people with advanced heart disease or a pacemaker. Your doctor will advise if this is suitable for you.

Exercise

Exercise increases circulation and stimulates the production of endorphins (chemicals naturally produced in the brain that kill pain). Many amputees find that moderate and frequent exercise can help to reduce phantom pain. Flexing and relaxing the muscles on the residual limb also helps some amputees.

Farabloc

Farabloc is a fabric which contains extremely thin steel threads but looks and feels like linen. The makers state that Farabloc has a shielding effect from ions and magnetic influences, which protects damaged nerve endings. It stimulates blood circulation and produces a pleasant feeling of warmth. It can be cut and sewn, washed and ironed like any other fabric, and is available in blanket forms of various sizes. People may have socks, sheaths, or custom residual limb covers made from Farabloc or the material may be incorporated directly into a prosthetic socket.

Heat

Applying soothing warmth has been reported to help deal with occasional bouts of phantom limb pain. Warm baths, a heating pack, a Magic Bag, or wrapping the stump in warm, soft fabric to increase circulation are all examples of how heat can be used. There are also rubs and gels which generate heat, such as Rub A535 or Tiger Balm. More advanced forms of heat therapy can be used under the guidance of a trained professional. Some amputees alternate between applying heat and cold. [see also Cold.]

Keeping a Journal

Some amputees write down dates and times as well as other factors that may be present when they experience phantom limb pain, such as stress. A record kept over time may indicate factors that influence or trigger the occurrence, frequency or severity of an attack of phantom limb pain in the same way that migraine sufferers have found that certain foods trigger their migraines.

Magnetic Therapy

Magnets have been used for thousands of years to treat many conditions, including recently phantom limb pain. Magnetic therapy involves applying a magnetic field to the body to relieve pain and speed up the healing process. The application of electromagnetic fields have been shown to affect cell permeability and improve oxygen delivery to the cells, which can lead to better absorption of nutrients, improved circulation, and clearance of waste products. Magnets may also reduce inflammation and pain, and promote healing. The magnets are usually incorporated into bracelets, belts, or fabric straps, and are available in differing strengths and sizes. These products are available from several companies such as Nikken and Bioflow. (It is recommended that you consult your doctor before trying magnetic therapy to ensure it is a good choice for you.)

Massage

Massaging your limb is a good way to increase blood-flow and circulation, which may help to alleviate some discomfort. Massage may also help to reduce swelling and loosen stiff muscles, which can provide some relief from pain.

Medications

Medications are useful in the treatment of pain (especially chronic pain). However, many amputees prefer to try other avenues of relief first. It is important for the amputee to understand all the possible side-effects of over-the-counter and prescription medications, including the implications of long-term use.

Anti-Inflammatory Drugs (examples: acetaminophen [Tylenol], aspirin, ibuprofen [Advil, Motrin]

Acetaminophen, aspirin and ibuprofen are all examples of medication which can reduce mild swelling or soreness, and are useful for mild to moderate pain. They are non-addictive and maybe effective for occasional bouts of phantom pain. One amputee uses Tylenol Arthritis Pain for relief from his phantom limb pain.

Anti-Depressants (examples: Amitriptyline, Elavil, Pamelor, Paxil, Prozac, Zoloft)

Developed to treat depression, many antidepressants have been found to be useful in the treatment of many chronic pain conditions, including phantom limb pain. These drugs work centrally on the brain to either block or increase certain chemicals that help regulate normal brain function.

Anti-Convulsants or Anti-Seizure Medications (examples: Tegratol, Neurontin)

These drugs have also been found useful in the treatment of phantom limb pain. They act directly on the nerves both in the residual limb and in the brain to alter neurotransmission, thus calming nerves in the residual limb which may have become over-active following amputation. These drugs are prescribed in small doses and are gradually increased to a level which promotes relief. It is also very important to decrease the dose gradually before ceasing to take the medication.

Narcotics (examples: Codeine, Demerol, Morphine, Percodan, Percocet)

These drugs mimic the pain killing chemicals released by the brain in response to pain. While they are very effective as temporary solutions for pain after surgery, trauma, or to treat cancer pain, they are highly addictive and in the majority of cases should not be used for a prolonged period. Amputees who have only an occasional severe attack of phantom pain may benefit from a limited course of this type of drug. When these drugs are taken on a regular basis the patient becomes addicted and desensitized to the drugs, requiring more of the drugs while achieving less effective pain relief.

Meditation

Both physical and mental tension can make pain worse. Meditation may help to reduce phantom limb pain by relaxing tense muscles and lowering anxiety levels. The aim of meditation is to produce a state of relaxed but alert awareness, this is sometimes combined with visualization exercises that encourage people to think of pain as something remote and separate from themselves.

Psychotherapy

Some amputees may find individual or group therapy beneficial. Some have even tried hypnosis. Trained professionals can help amputees learn coping skills and can provide psychological and emotional support for dealing with pain.

Shrinker Socks

Bandaging and shrinker socks apply even pressure to the residual limb which may help to reduce or alleviate phantom limb pain.

Wearing Your Artificial Limb

As well as improving circulation, putting on your artificial limb and moving around may also help alleviate phantom limb pain.

Financial Assistance For Prostheses and Other Assistive Devices

We recently received a suggestion from a support group leader for an annual meeting workshop. She wrote, "One of the things we need to expand on is that once the amputee has left the hospital or rehab and is on his way home, we need to provide support for them and the family on how to adjust to the changes they need to make in their environment. Many are low-income families or don't have anyone that can help them to adjust. . . . . Many are confused about getting those services and how to be able to get and afford equipment they will need."

It remains to be seen if such a workshop will be scheduled, but if any groups are interested in obtaining national non-profit information for prosthetic funding, there is an ACA fact sheet available via the Web site in the Information Center. The fact sheet, compiled by MaryJo Walker, is entitled "Financial Assistance For Prostheses and Other Assistive Devices."

It outlines steps to take before the amputees starts to look for sources of assistance. Very comprehensive information is included about the services provided by Medicare, the Veterans Administration, the Civilian Health and Medical Programs of the Uniformed Services (now called TRICARE); and general information is included about state vocational rehabilitation services. state technology assistance programs, protection and advocacy/client assistance programs, private insurance, and medical discount programs. There is also a long list of non-profit organizations and providers of children's services.

It occurred to us that you might want to take a look at this fact sheet and perhaps duplicate it for your resource library or for distribution to your members. You can find it at . . .

http://www.amputee-coalition.org/fact_shee...ssist_orgs.html

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Thanks Johnny for the great info links.

My plp has decreased markedly since I have been walking, and exercising while wearing my prosthesis. For years I had been told not to exercise w/leg on, but I find the exercises specific to amputees has helped enormously.

Also helpful to me has been Yoga and proper breathing/relaxation techniques. Stress definitely triggers it.

We are all individual as are our solutions. I am a firm believer in the Mind/Body connection. Keeping a journal to isolate what event/emotions/activities result in plp can empower us with self-awareness to lifestyle changes we can make to at least alleviate the intensity.

Thanks to everyones comments - for me (18yrs post surgery) this is an on-going problem, but getting better.

WA :D

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I never realised they kept you on it so long. I don't really fancy taking it for the rest of my days. Has anyone had any success with anything a bit more "new Age"? Hypnotherapy etc?

hi,

I'm EXTREMELY new to the whole issue of amputation, as my son is only 1 month post op, but yes, thats what i'm also interested in looking at too.

I'm looking at making up some guided meditation tapes up for my son, but need to do FAR more research on the physiological and psychological aspects of the issue before i can turn out anything that might be effective.

As a natural therapist myself, with a mother whos a hypnotherapist and the input of a few psychologists and amputees with personal experience to guide me I actually think there MUST be a way to get through to the mind and nervous system that can solve the problem once and for all.

Because we are still not fully discharged from hospital and my son has multiple injuries (from electrocution) his care takes up practically all the time I have at present so making the tape will be a slow process.

I was thinking today of myrrh or clove oil, and wondered if anyone has tried applying it topically to the affedted area?

Cloves and myrhh are frequently used as dental anodynes to numb the pain of toothaches and prevent infection . Since toothache and Phantom pain both have 'nerves in common I wondered if it would work?

30 grams of herb to 500mls of oil of your choice is left in a jar for a fortnight to infuse, then strained and bottled and used as needed. Alternately the tinctures or essential oils could be added to an aqueous cream or lotion base for those who found the oil base too greasy.

Will let you know how i get on with my tape,ards

tracey :)

reg

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I've been on 300g of Neurontin 3 times a day since my op in September. I have found it amazing, but it did take about 3 weeks to kick in which was a bit of a bummer! I also have amitryptaline at night, only on 10g of that though, I once took double that amount as I was told I was allowed to, but woke up the next morning feeling awful, headach, belly ache etc. Lets just say, I stick to just 10g now!!

Does anyone know how long it will take until I can start bringing my dose down, it's really annoying having to remember taking pills out when I am out for lunchtime.

I have found this website really helpful, so thanks to everyone who has posted stuff B)

Liz :huh:

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Hi Lizzie,

I started at 400mg of neurontin three times a day. I dropped mine down 100mg at a time. I started taking 300mg instead of 400mg during the day, continuing to take 400mg at night before bed. I slowly reduced the daytime dosage and than the nighttime dosage. I now take only 100mg at night before I go to bed. My surgery was March 21, 2002. After the New Year, I will try to come off of neurontin all together. I still experience phantom limb pain but cope with it better than ever. I hope that this helps.

Best regards,

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Thanks that is a help. I hope to be dropping my lunchtime dose after the new year as that is what the doctor has suggested when I talked to him yesterday.

I also found that just after my surgery when the neurontin had not kicked in that doing something with my hands, i.e. stress toys helped. I had something called a tangle toy which I found invaluable for relieving the pain, this helped me but I don't know what workd for other people.

This is the address for thie website if anyone wants a look: http://www.tangletoys.com

Liz x

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I am a fairly new RBK and I am taking 600mg of neurontin 3 times a day. I started out on 300mg 3 times a day and may have to increase. The tingling feeling is starting to get worse at night again as I am walking a lot more. <_< Ir seems to be working well. I still feel as though my leg is there :( but the worst seems to not be there. In a way I use that feeling to benefit me. In order to flex the muscle in my "nubblette" i have to wiggle my toes. I was on Effexor XR 150mg once a day and Depakote 250mg 3 times a day prior to the accident so maybe they work together. I do not have any groggy or druggy feelings as a result. I do have trouble remembering things at times. I'm not sure if it's the meds or trauma from the accident, although I didn't hit my head.

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HI,

I had a below knee amputation almost 2 years ago after an motorcycle accident. My doctors told me it's absolutely important to start immediatly with medicaments against pain (sorry my english isn't the best) and gave me in addition to morphine neurontin in a dose of 800mg 3 times a day. I took it for about 6 month and reduced the dose slowly. Their explanation was that the brain is not able to "learn" having phantom pain when you stop pain immediatly. For me that worked very well :D . But I don't know if it works when you take it month/years after amputation.

Daniela

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I took neurontin for several years, the dose constantly being adjusted. I found it totally ineffective, and it made me feel peculiatr. I was already taking it for back pain before I started taking it for neuropathic pain. I continued taking it becausre 'I was so desperate for something to ease my pain. I still haven't found anything...

Lynn

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Hi everybody i am a newie RBK i have only been out of hospital 2 days i had the operation on 22 june 04 i am on 800 mg of gabapentin 3 times daily plus some other bog standard pain killlers the phantom pain is driving me mad as otherwise i feel great i cannot feel all of my leg just my foot which feels like a solid block which i cannot move (the reason i had to have the amputation was because of my foot which was completely set in one position and i had a bone infection in it) because my pre-operation pain was so bad i was on 400mg of tramodal for over 3 years (very bad) plus 2000 mg of gabapentin plus arthrotet all very high dosages/

what chance have i got in being pain feel when i was on so many strong pain killers before the operation. Has anybody got any ideas i get my leg casting on 20 july 04 and my first leg 5 days later i will try most things just to be rid of this pain.

thanks to everyone .

Tricia/Middx

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Hi Tricia,

I am so glad you have done it and now you are in your way to be back in circulation..Go girl :P

I didn't take any more pain killers after I was sent home because people would acuse me of not know what I was saying because my brain was not the same since I was drogged most of the time..well I showed to them..I flushed all my pills down the drain and start taking only tylanol, Alive, advil or ibprufen medications. When the pain was too much, I took a hot bath. It did help. Well good luck and welcome back :unsure:

Dea

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Just to add my two cents worth......

I have had the opportunity of taking two different types of medications for my plp. The first was Neurontin and the second being Gabapentin. I found the Neurontin didn't seem to be any different from the Gabapentin.

I only took it for 2 months so my outlook on the effectiveness is limited. I find I do have to take more Gabapentin in order to knock out the plp. Therefore I guess it would be more potent? One thing I hated with the Neurontin is the frequency I had to urinate. Since taking the Gabapentin the have been fewer trips to WC.

:lol:

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One thing I hated with the Neurontin is the frequency I had to urinate.

I always thought it was the beer doing that :lol: :lol: :lol:

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I kinda had a feeling the beer was doing it......but after 4 or 5 you tend to forget the "why's"!!

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