need new ideas for nerve pain meds

[barbaraschiavo]

I've been on methadone for over 5 years for sci pain and had been doing great with VERY few increases over those years, but for the past month and a half i havent been doing well at all. I increased the methadone for the past 4 days (my doctor is fine with that on my bad days) but it hasn't touched the pain, very unusual for me. It started gradual, but is becoming continually worse, when it began I thought the cold might be doing it, or just having a bad few days, but nope, it just won't go away. Does anyone have any ideas on something that works well for nerve pain? I've tried neurontin, no help, Lyrica had some success, but the side effects were really bad, SEVERE swelling, weight gain, and my liver function tests haven't been the same since. I don't know if it's just coincidence, but my thyroid went out of whack when I took it as well, I've had to take synthroid ever since.
I'm just at my wits end, my doc doesn't seem to have any new ideas. I also have a spinal stimulator, but that only works about 1-2 hours at a time, then my pain overrides it and I have to turn it off for a while b4 using it again. It works if I turn it higher, but then it causes severe muscle spasms which defeat the purpose.
Any ideas?

[JAVISI]

The only other med that I know of that may work for nerve pain is Teretol.Although it too comes along with side effects. It helped me for awhile. Nerve pain is so hard to get releif from and their are few drugs out there for that specific affect. I am on a duragesic patch, it seems to help me mor than the methadone but every body is different!

I sure hope that you get pain teleif soon!

Dream Big and Reach for the Stars, Javi

[mazie456]

I take Topamax for nerve pain. Currently 100mg three times a day but my surgeon wants me to try Neurontin instead for terrible nerve pain I have in my right thigh. You may want to try Topamax, up until this surgery, it has worked very well for me.
Take Care.
Kathy

[barbaraschiavo]

mazie, what's the cause of your leg pain, if you dont mind my asking,because that's exactly where i have my pain, my right thigh. the topamax works well for you?

[hoops2u]

The cause of most leg pain, foot pain, glute pain etc, is referred pain, coming from affected nerves in the lumbar region. They are either irritated due to constriction, or are damaged due to hernia, scars from past surgery, degeneration etc. The nerves send incorrect messages to that area that something is wrong in that area even tho' nothing at all is wrong with the leg, foot, glute, etc. It is actually the nerve leading to that area that has damage.

I think a lot of pain is worse in inclement weather. I have struggled with this same thing for over 10 years. I take Kadian, a 24 hour release capsule morphine. I have just titrated myself down because I am concerned about the long term use of morphine. I would like to get off these meds but have not found a viable alternative as yet.

I have taked Neuronton in the past and will never use it again. To each his own, but attorneys are winning large class action suits w/large dose usage of this medication. My PM Dr. and my Pharm says it does not work well in low doses. I was a zombie for about a year until I realized what was doing it, went off the Neurontin and felt loads better. I do take lower doses of Topomax.

My pain level is higher when there is high humidity, big changes in weather, cold/wet, etc. I just don't have a good answer except massage therapy seems to help a great deal and stretching exercising.

Good luck to you all. I know when ya hurt ya just do not feel like exercising. I have hermitized this winter and live and let live.

God Bless you, and when my waand comes in, I'll be waving it your way.
hoops

[jtroy]

just my opinion...give the Lyrica a thought....I've tried all "neuro" drugs anyone will find to try and it is the single one that has helped at all (and when it did I about flipped)...anyway...ask the doc for samples and titrate higher slowly...or else you'll feel drunk alot.

Good luck

T. Jones, DVM

[Diandra]

Hi Barbara,
I agree with Dr. Jones. I started Lyrica at either 50 or 75mg dose and the side effects were very bad. Because I had also reached the end of what I could try the doc suggested we restart at only 25mg. I did and I just endured the side effects for 3 weeks and did not drive, etc (feltl dizzy, drunk, off kilter) and they went away and I know get fairly decent nerve pain relief. Just a thought.
Diandara

[Nana4&cntn]

I have tried all the neuro meds to deal with my nerve pain. I have found as Troy has that Lyrica works well when titrated up slowly. I also take Keppra (Levetiracetam now generic). I also had tried Trileptal, but the side effect of dangerously low sodium levels caused me to seizure. My nerve pain is the result of rt S1 nerve root compression.

I also take methadone, but for chronic back pain. I have never been given a pain med for nerve pain as they really don't work for nerve pain.

I hope this helped or gave you some ideas for other meds to try.
Kathy

[mazie456]

The pain I have right now is being caused by L3 neuritis. I had surgery 2 months ago and my surgeon had to manipulate the nerve some because the disc was all up on it. I am hoping it is temporary but I am realistic enough to know it may be permanent. It is soon after surgery so there is plenty of time for it to heal. Whatever you decide to try, you do have to titrate slowly. I believe I started on 25mg a day of Topamax. And I think I have tried Neurontin but it made me too sleepy. Will discuss this with my PM doctor.

I find it so interesting to see people discuss these meds. People either hate them or say they have been helped a lot by them. I remember when people were saying Neurontin was the drug saving their sanity. Then it was Topamax, now it is Lyrica. I have no doubt the class actions will be coming for Topamax next, then Lyrica. Just give it time. We take a chance whenever we take a medication for an off label use.

[Kandra]

Just from my own (recent!) personal experience, AEDs (which Neurontin and Topamax are) can easily cause low sodium which in turn makes one feel confused among other symptoms.

I take Tegretol for my seizure disorder and have a slightly low sodium even now. I'm also supposed to be taking Topamax but am a bit nervous about it due to reports that around 33% have metabolic acidosis problems...

Anyway, my point is that if your PM is prescribing AEDs at the much higher doses for your pain issues to make sure that your doc is watching your labs, which also include your liver function studies :)

[suede]

Sorry to hear that the methadone is no longer helping the nerve pain.
I can sure relate I have had it for years and have gone the route can't even count all the different meds I have tried and some worked but the side effects were to much.
The one that has been working for me now is "cymbalta" and if I take it as directed it works well only thing is now that I am on medicare with a rx plan it is expensive and I just can't handle it.

[barbaraschiavo]

I see my dr. on the 11th, so I'm going to talk to him about the topamax. I tried lyrica and it really helped a lot, but the side effects were out of control. I was retaining so much fluid, even my abdomen bloated to the point I couldn't eat without vomiting. My labs went haywire, my liver function tests and thyroid never recovered, at least the fluid went away after I stopped it. It's a shame because it really helped. The weather affects me also, that's what I thought the problem was when this started, but it just won't quit. I've been getting back pain lately, which I RARELY get, if I do it's usually just muscle aches, so I'm getting a little worried something else is going on. My neurologist said I might have a problem with cysts and fluid in my spinal cavity after the injury, so maybe that's what's going on. It just seems strange for the methadone to stop working this suddenly after 5 years of no problems. Thanks for all the suggestions, hopefully next week I'll have some answers or at least some relief.

[steph2323]

I have to second the Cymbalta suggestion. It doesn't control all of the pain,but does help with the constant burning,itching that I had from the nerve pain. I had tried all of the others,but they were too sedating and I could not function. I am on 90mg a day.