I am a little concerned about staying on the nortriptyline because it is increasing my involuntary outward muscle jerks (ones people can see, not ones that I can only feel) and I am having different "types' of these jerks (hard to explain). Worried that it's doing something bad and permanent and that may worsen.

Isn't the jerks how this all began?

I'm confused at this point. You've stated that this began (even with medications) over a year ago with twitches and jerks and that you've been through 4 neuros. Can't the jerks just be progression if you've already had them for so long? How do you know (or think) they are the nortriptyline?

I'd stop making changes to your medication until the doctor gives advise. Your body doesn't have a chance to figure out what it's supposed to do with what you're giving it. Your best bet for pain relief will be the combo of gabapentin and nortriptyline and hopefully your doctor will tell you the appropriate doses of each. I think you said this is your PCP, not neuro. I hope he's comfortable addressing this for you without just sending you on to another neuro and wasting more time for you.

Someone will correct me, if I'm wrong, but I believe neuropathy itself can cause muscle spasms. If this is any help to you, the first month or so I was on Nortriptylene, My hands shook as bad as someone with Parkinson's disease. It was embarrassing to have a store clerk help me count out my change for a purchase. I guess the desire to be in less pain was enough for me to stick it out and most of it subsided. I still have a bit of a tremor in my left hand that is a bit worse than the tremor I had when I smoked cigarettes. Quit in 2008 with the help of Chantix, about 3-4 years before the neuropathy.

Hi en bloc,

Yes, twitches and jerks are how all this started. U could be right and the increase in jerkin and slightly different form could just be progression of what I already had. It just seemed to coincide with the nortriptiline. I am sticking with the nortryptiline cus I can feel it's doing something it's just no where near enough. I will add the gabapentin and hope for the best. I will stick with the combo for a while to give it time.

I know it might be a bit early to add a drug ( only on nortriptiline for almost 3 weeks) it's just that I've gotten conflicting info on how long it's supposed to take to work. I don't know...i am lost and frightened. The silly thing is , I have a feeling that even if I get good relief, my mental state is going to still be a mess.

My neuro said 4-6 weeks for nortriptyline to reach FULL effectiveness. You may still get a little more improvement....
:hug:

Just came back from dr... He wants me try t3 first for 5 days. Then we can try gabapentin if it doesn't work. He also gave me a compound cream to put on the acupuncture sites. He saw the marks that are still on my body and thinks that maybe the muscles are spasming around my nerves. I have another appointment in 5 days for follow up.

What is t3?

Sorry, it's Tylenol 3 ( here in canada it's a prescription drug)

Is that Tylenol with Codeine?

If it works, is he actually considering keeping you on Codeine until this resolves (which may be years)?? That's really unusual to start with a narcotic and to go with more likely drugs that will help, second. Not sure how much he Rx'd for you, but large or frequent doses of Tylenol are horrible for your liver.

At least you will know if narcotics will help, though. but I wouldn't stay with that if it helps...you should still try other options first.