Please Help - Stories of Trileptal - Losing my MIND - Litterally
 

I have been pain free for 6 months -- 100 Trileptal 2 x per day

Bad news -- Cannot feel confident going on a job interview - to get a job - to get my bills paid! I have a Master's Degree in social work and I feel like an alzheimers patient - I can't even help myself.

More afraid of Tazer-lightning to the side of my face - can't go to work with that either.

I cannot even play scrabble with my son -- my new husband is very concerned.

I realize some don't ever see relief - but this could cost me my sanity and career -- Seeing Neuro soon ---- but YOU are the experts ---

If I go off it -- will it not work again? Should I just taper off and cross my fingers? Is gabapentin this debilitating intellectually for others?

Should I consider surgery since it has been only 6 months ago that an oral surgeon changed my life forever?

Thanks--- Kimberly

I took Gabapentin and experienced medicine induced depression. I couldn't understand what was going on at first. I was down with nothing that I could pinpoint that I was down about. I had a tremendous amount of hope that I would be delivered from TN even when I had it. God gave me this faith this knowing that was unwavering. The medicine was relentless with how it affect my disposition. I finally came off it and the depression/oppression went away in a few days. I switch to Lyrica and I have had no problems. Of course Lyrica is name brand . . . but I had no choice.

I would not taper off without consulting a Neurologist. What about Carbatrol? So much better for the typical (tazer) pian then anything in my opinion. I bet that would help so much! It took out the typical TN pain I was feeling in 2 days. Unfortunately for me the TN kept jumping over the dose I was on.

Your Neurologist will work with you to find the right combo. I would exhaust every possible drug combination before you consider surgery.

I had a MVD after 10 months of TN but I failed medical treatment according to my Neurologist. My body could not after awhile handle the Carbatrol.

Surgery is not without risk. I am free from TN but the Neurosurgeon inadvertently damaged the nerve and I am still dealing with the fall out of that. I know many have had a great experience. Although being completely free from TN and dealing with what I have is workable. Although I couldn't talk for the first 5 months after surgery. Thank God I am a stay at home mom. I also had my mother-in-law out for 2 weeks after the surgery and she stayed 7 weeks. I really needed her for 8. We wouldn't have made it without her help due to the damaged nerve pain and horrible side effects from Baclofen.

Let us know what you decide.

My best to you!
Kimberly

My job held on as long as they could but it had to end when I couldn't get better fast enough. I was crushed and turned into a neurotic, sick, scared person. I won't drive cause of no confidence anymore. I really don't go out with my husband to shop, he does it. I guess it is like having your legs pushed out from under you.
Doodle bug7

Trigeminal nerve pain free
 

I first begin experiencing TN pain less than 2 years ago. Luckily I found Dr. Zhang, an experienced doctor/acupuncturist in San Jose, CA whom practices Traditional Chinese Medicine. It got better after several acupuncture visits and take home herbal medicine. I was pain free for about 4 months until I drank coffee again. According to Dr. Zhang, I need to stay off caffeinated drink as it would irritate my already sensitive/hyper nerve. After more acupuncture and medicine, it got better again. This time I was pain free for about 6 months. Up until about 2 months ago that torturing pain gradually snuck back on me again. Again I visited Dr. Zhang. This time she prescribed me a different set of herbal medicine that would calm my nerve and body. I took it home, threw all contents (a small paper bag full) into a pot of boiling water and let simmer for an hour. I was instructed to drink the liquid only - 1 cup in morning, 1 cup at night. It was quite bitter and it gives off a pungent aroma, but hey, I'll do anything to rid that pain. Guess what, it worked! Those episodes of what it feels like being stabbed with a handful of electrified needle, searing, excruciating pain stopped at end of first day. Doc prescribed 6 doses, each dose are to be finished in 2 days. As I continue on my med toward end of 2 weeks, I was practically pain free.

Since then, I do still get occasional "shock" when I touched my right forehead/temple area as I wash my face (the epicenter of my TN pain), but I can generally avoid it by being extra gentle as I touched that area of my face. Given it a pain scale from 1-10, 10 being the worst, these shocks are a 1 or less, and it only lasts a split second. It doesn't even come close to those unbearable full on pain episodes that lasts 10 seconds or a minute or 2 that feels like forever. I couldn't eat, couldn't talk, couldn't brush my teeth, couldn't touch my face, even the lightest breeze sets it off. If you are reading this, you know what I mean.

I didn't feel any side effect from taking these medicine. No sign of depression what so ever. Just have a piece of chocolate or something sweet to kill the after taste. Thank God, I feel normal again!

Here is Dr. Zhang's info:
Guang Ci Tang
Dr. Ya Wen Zhang
481 Saratoga Ave.
San Jose, CA 95035
408-249-3055

I hope sharing of my experience would help you. I know how it feels.

Jason Kung
5/10/2011

Carbatrol works for me
 

As Kimberly suggested, maybe you could try the carbatrol (extended release tegretol). I used to take the generic tegretol chewable tabs, but they barely helped and would cause much drowsiness. Granted, my pain is very mild compared to most and very sporadic, but the carbatrol has kept it under control with less frequent episodes and less side effects. I only take 200 mg a day and I take my dosage at night before bed. Although, you would probably need a stronger dose, it may be worth it to see if the switch would help.

So sorry you are suffering.

Good Luck,
Rhonda