pain medication for MS patient

[Wishbone]

My mom is 63 years old and has had MS for more than 20 years. She has been using a wheelchair for more than 10 years, and more recently has suffered from severe pain in her feet that wakes her at least once every night. One foot burns, and the other both burns and has a pins and needles sensation. The pain improves after awhile if she sits up and my dad positions her feet on the floor, but it is hard on both of them for her to awake in pain every night. My mom takes Baclofen, Elavil, Vioxx, and Neurontin before bed. Although her prescription for Neurontin is for 300 mg 3 times per day, she takes only the 300 mg capsule before bed because she is not able to think clearly if she takes it during the day. She has also tried Tegritol instead of Neurontin, but when she tried it she felt like she had a very heavy weight on her chest, which was an intolerable side effect. Her neurologist's nurse said that Neurontin and Tegritol were the only drugs her doctor uses for the kind of pain she is having, so there wasn't anything else that could be done. I wonder if you can suggest

1) ways to minimize the side effects she experiences from these drugs,
2) other drugs instead of these that she might discuss with her doctor, and
3) other things she could try in addition to optimizing her medication.

Thank you for your comments about this problem.

[CCF Neuro[P] MD, RPS]

Dear Suzanne:

Sorry to hear about your mother.  It description of the burning the numbness/tingling sounds like neuropathic pain.  The two medications that you mentioned, neurontin and tegratol have been used for this purpose for awhile.  Both have a good record against this type of pain.  But every patient is alittle different and so reponse varies.  The dose of neurontin is very small, and one could raise the dose at bedtime (for instance, for cancer pain we often will use 4-8 grams per day to control pain).  Another suggestion is a cousin of tegratol, trileptol which acts like tegratol but with fewer side effect because the major metabolite of tegratol isn't formed by trileptol.  Another suggestion is to go up on the Elavil at bedtime.  I would not do anything unless you talk to your mother's neurologist.

Neuropathic pain is difficult to control.  Some have found help with biofeedback, some with message, some with physical therapy.  Again, it is very individual as to what will work.  I wish your mother luck.

Sincerely,

CCF Neuro MD

[Cynthia]

I have also tried Tegratol, it didn't work for me either. Ask your mom's doctor about Trileptal. It was released in the US on Feb. 15, 2000. It is in the Carbamazapine family but is different enough that it's worth trying. It works for me. I started out on 150mg 2x a day,and worked my way up to 300mg in the AM and 450mg at bedtime. Good Luck.

[Jim Bradfield]

I am 67 years old and have been a Trigeminal Neuralgia sufferer for 12 years.  I have been treated with Dialantin, Tegretol, and Neurantin.  Currently, I am taking 1600Mg Tegretol and 1800Mg Neurantin.  It has made the pain subside to a level that I can tolerate, but the side effects are driving me crazy,  Double vision, dizzyness, unstable, irritable, and loss of any sex drive.  My Doctor has recommended I try using 1200Mg of Trileptol in stead of the Tegretol.
Has anyone had any experience with this drug???  Please send me an E-Mail as soon as possible with Tel# so I can get your reaction to this drug
Jim Bradfield
245 Grove Dr
Portola Valley, Ca. 94028
Tel  [phone]
E-Mail  ***@****

[Mojobeast46]

A related discussion, Spinal pain was started.