Thank you for your words of advice. I talked to Matt last night and he has an appointment on Friday. His doctor might change the Vicodin to Percoset and see if that helps, and possibly increase the Neurotin to a level higher than the recommended maximum dose.

He's taking Xanax (mild tranquilizer that seems to help the pain), Wellbutrin and Ludiomil. Matt is afraid that if he changes his anti-depressants he may have a panic attack or other really bad side effects. But I agree, Ross, it may cause him more pain to switch right now but if Elavil works better then it's all worth it. I think Matt is going to try to make it clear to his doctor that he needs something that lasts longer or something he can take more than three times a day.

Matt hates the phrase "pain management clinic" because he thinks if he goes there he's admitting defeat and will have to live with pain instead of being pain free. The person prescribing the medications now is his regular doctor. If he feels like the medications aren't working after this visit I'll bring up the "second opinion" option you mentioned. It can't hurt to ask someone else. I think he should go to a pain management clinic because they'd probably be more knowedgeable about treating someone with this pain. And believe me, Matt has been outside of Milwaukee. He's traveled to Seattle, Chicago, Lake Geneva, Port Washington and is planning on finding a gamma knife center somewhere in the U.S.

Thanks again,
Amy

http://www.mentalhealth.com/p.html

It supplies quite a comprehensive list and description of many of the drugs mentioned here. It may be worth a look especially if you think Elavil may be an option.

http://www.rxlist.com/cgi/generic/gabapent_cp.htm

He's decided to do the scan in California within the next month instead of waiting until May. The appointment isn't set yet but he has a referral from his doctor and he's been in contact with the hospital a few times already. We'll see how soon he can get into to have the scan. If we do make it out there, and the scan is helpful, I'll be sure to write with information as soon as physically possible.

Best of Luck
Amy

RUSSELL.A.STONE@VERIZON.NET

Do you have I.A.N or Lingual nerve damage? Are you on a lot of other medications? Did you notice any side-effects with the Elavil?

Matt's doctor is phasing out his Tegretol (keeping him on Neurotin) and will be starting Elavil in another week or so. I'm anxious to see if it provides more relief. I think he needs something that lasts longer or that he can take more often in lower doses.

Thanks for your response!
Amy

Elavil is known to help nerve pain in some people but like you I got the common side effect of not being able to urinate on it. This is serious and you have to discontinue it so watch for that side effect.

Also, 5 medications is nothing when you are in chronic pain that is that severe Ross. I am constantly amazed reading your posts that you don't take anything. Either you have more numbness than pain, an extremely extremely strong mind, or something about you is different.

People who have pain severe enough to need Percocet are not joking. It hurts!!!!!

If you go to the MGH Neurology Boards and pick Chronic Pain you will see that some people are on 10 medications. I am only on 3 but I was on more.....i just stopped them as i wanted to be more alert....but now i have more pain. I cannot work because of it either.

Also, I wish you would do research on gamma knife and other procedures and talk to people who have had these things done. Many people become worse, not better.

Overall, nerve damage is the hardest pain to treat ......there are no easy answers. Doctors state on some sites that narcotics don't work but I haven't seen anyone with true nerve injury that doesn't need to take narcotics just to function from the pain. And although Percocet is strong, it doesn't work on everyone. Some people need even stronger medication than that.

I never wanted to take any but neither did I want to spend my life in bed with my face in a pillow crying for the rest of my life.

Do what you have to do to function even a little. And yes, it's hard and we are all young, but appreciate the fact that you are alive and don't have cancer, but have to live with pain. Still better than being dead and still you can have some good days i'm sure.

Matt's girlfriend: Get him to a proper pain clinic. If you go to the MGH Neurology website and read under chronic pain and ask people they will post where to go. Not every pain clinic is good.

I am lucky to have an excellent doctor in Canada where it is even more difficult. I went to the pain clinic 3 times here and they said they could not help me. lol