[Jordo]

Hiya.

So I'll try to keep this as brief as possible...but I really hope someone here can help me out, or maybe even point me to the best forum to post this (there are so many sub-forums here.)

I have had chronic hand pain for years and years now. I play guitar, and it's extremely difficult. It's even hard to write, or sometimes carry an umbrella, or a bag.

After going to hand doctors and doing physical therapy with no results, I was finally referred to a neurologist. He found "pinched nerves" in my neck that was leading to hand pain.

He put me on Trileptal and it worked its way up to the big dosage of 7 pills a day (150 mg each), and I've been on it for about 5 years. It did help. A bit. Not a lot. But it helped.


But because of how far away this doctor is, and because of his demeanor which I found rude and stressful, I have been wanting to change doctors. I finally did.

Now this new doctor tested me, has seen me a few times, and she COMPLETELY disagrees with my old doctor. She says she "would not in good conscience" put me on trileptal, so she wants me to wean off of it. She also says she has no idea why I am feeling hand pain because she sees nothing wrong with me in the tests.


I have started to wean off Trileptal and already my hand pain has come back in full force. They are hurting right now as I type this. Which doctor is right, or wrong? I have no idea what to do here. Should I try getting off trileptal? Or should I go back to the doctor I don't like, because that huge dose of trileptal seems to work?


thanks everybody,

J

[Jomar]

Hello,
Since you mention guitar playing and the hand pain along with the Neuro thinking of a pinched nerve in the neck.

I will suggest looking at our Thoracic Outlet Syndrome (aka TOS) forum.
It can be related to long term repetitive strain injuries, previous sports or whiplash injuries, with postural or hyper mobility factors, hypertrophic upper body muscles, extra cervical rib, anatomy anomalies...and more.
TOS forum
http://neurotalk.psychcentral.com/forum24.html
TOS forum useful sticky thread - a sort of crash course of info here-
http://neurotalk.psychcentral.com/thread84.html

My main question now is have you had any x ray / MRI to check for any c spine causes or anomalies?
And Dr did not rx any PT, just rx'd the meds?

Don't know if you looked it up but the med is an anti seizure med.
[Oxcarbazepine is used alone or in combination with other medications to control certain types of seizures . Oxcarbazepine is in a class of medications called anticonvulsants. It works by decreasing abnormal electrical activity in the brain.]
http://www.google.com/search?q=Trile...ient=firefox-a

If it was me , I'm not one to take meds if I don't really have to, so I would start weaning off as new dr suggests.
But also ask for MRI if none has been done yet or at least a xray of C & T spine..
also ask for an evaluation by advanced PT if dr does not mention it.
A really good PT evaluation is sooo much more thorough than what many MDs will do - PTs and chiropractors too, study the body & how it works structurally for many more hours than required for MDs.

On the TOS usefull sticky thread post # 1 has lots of therapy links & info on alternative therapies.

[Jordo]

Thanks for replying

I did look up oxcarb. and while it's mostly a seizure med, it's also prescribed for "neuropathic pain."

I actually have an MRI of that next week. I had one years ago which is why my doctor put me on trileptal.

My main concern is how drastically my hands have started hurting as soon as I have lowered my dosage, and why my new doctor does not seem influenced by that fact.

What is confusing is she wants to replace trileptal with Effexor, but while I have anxiety issues I am not looking to be on an antidepressant. I don't understand how that is a suitable replacement when my main problem is hand pain in both hands.

[Jomar]

Did the old MRI show a nerve impingement?
But either way -still no rx for any PT??

I just don't understand why drs will rx meds before having a patient try some quality PT?

Big pharma influences I guess.. keep a pt on meds keeps the dr in business...

Personally I'd look for a expert chiropractor or Phys therapist and ask dr for a rx if your ins requires that.

I had the best results and cheaper - with my very good chiro - than all the PT places I was sent to during mt work comp injuries...
I did also seek out an advanced PT on my own for verification of my injury and he did find & suggest another thing that was a major help for me that all the other PT's missed.


Do you think repetitive motions could be a cause or factor??
heavy computer , gaming, desk work , or texting usage?
any previous injuries to upper body?
head/shoulders forward postures?

[Jordo]

If by PT you mean physical therapy:

Yeah I did physical therapy for a few months and it had no effect at all. That's what led me to moving on to a neurologist, because my hand pain didn't seem to come from any obvious injury or strain. PT did not do anything for my hand pain. Trileptal did.

I believe the old MRI showed nerve problems, but I guess we'll see what the new MRI shows. I just can't last much longer like this because weaning off Trileptal is really hurting me.

[Jordo]

Oh also:

I don't think I do any more repetitive hand stuff than other people. Obviously I'm on the computer often, all that. But the pain and tingling feeling is equal in both hands, and all the hand doctors I saw and x-rays and etc had no explanation and all of the physical therapy I did did not help, in fact sometimes it felt worse.

All I know is then I got put on trileptal and it helped...NOT 100%...But it helped. And now that I'm weaning off of it, slowly, I am in a lot of pain. And this doctor absolutely refuses to keep me on it, even though it seems to be a common prescription based on what I'm finding online.

Why she'd replace it with an antidepressant is very confusing to me, and kind of disturbing.

[Darlene]

Happy to see you have come to be with us. Just let us know if we can be of any help. There are great and caring friends here to assist you. Our shoulders are here for support in many ways. Seems you have been through some ruff times. Please keep us up to date.

Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.

Darlene

[glenntaj]

--what the doctor did with you is actually fairly logical, but it certainly isn't the only way to go, as many of the other respondents here are indicating.

What you have described sounds like neuropathic pain, which is differnt from regular nociceptive pain; it is generated by erroneous signals from compromised nerves (not accurately signalling nerves indicating other tissue damage). In such cases, the first line of medication often IS an anti-seizure drug, as many of these are often used to stop or lessen erroneous signal patterns from damaged nerves. (The most commonly prescribed of these drugs is Neurontin, or gabapentin, followed by the newer Lyrica, or Pregabalin). Anti-depressants, such as Elavil, are also often prescribed, as, at lower doses than used to relieve depression, they alter neurotransmitter balance in the nerves enough to have an effect on the erroneous signalling.

Still, a search for the CAUSE of your symptoms is very important. Given the location of your symptoms, problems in the cervical spine nerve roots, problems farther down in the shoulder upper arm (such as Thoracic Outlet), and even farther down the arm at the level of elbow or wrist are all possibilities, as nerves can be entrapped/compresses at any/all these locations.

You do need compreshensive imaging from the neck down, and possibly some nerve conduction studies, to try to pinpoint just what is generating the symptoms. Then you can plan on a therapeutic course of action, which may include medications but also physical therapy, exercise, perhaps, in extreme cases, even surgery.

[Jordo]

Thanks glenntaj

Well like I said, I had an MRI of the spine area 5 years ago and because of those results I was put on Trileptal.


What I really want to know is if this new doctor who is 100% against Trileptal is a good doctor, if I should trust her, or just find somebody else.

Honestly she seemed misinformed about Trileptal and has no problem taking me off of it, even though it is causing me a lot of pain now.

And wanting to replace it with Effexor which is an intense antidepressant and seems a lot more dangerous than Trileptal (she wants me off Trileptal due to it's possible side effects, NONE OF WHICH I'VE DEVELOPED in 5 years of taking it), which I do not feel I need, seems bizarre to me.

[mrsD]

There are potential serious side effects from Trileptal use over long periods of time.

hyponatremia
leucopenia (low white blood cells)
and many other serious effects:

http://www.rxlist.com/trileptal-drug.htm

And you were on a big dose too!

I think the new doctor is being cautious and looking out for your long term best interests.

This drug also depletes Vit D... so you will want to have a test for that, and also do B12 while you are at it. Low B12 (below 400) can cause nerve damage.

If you have motor damage (weak muscles) as well as pain in your hands, that would be more serious IMO.

Think back to when this all started... can you find a trigger there? If you can, it may point to a solution. People with chronic nerve problems really have to become their own detective. Did you have an injury? Illness? Take some RX drugs (including antibiotics like Cipro or statins), vaccines, exposure to chemicals, exterminator visits, formaldehyde, etc?
Anyone in your family with nerve problems?

Please visit our subforum and regular PN forum here. We have gathered alot of information that may have an answer for you.