Extreme skin sensitivity...Tegretol or TN?

For a while now, a month or two, my skin has been extremely sensitive. Sometimes to the point that a light touch hurts. Sometimes, a touch will shoot an electric shock from it's origin up to my trunk. ie. A light touch to my foot will run up my leg to my back. This happens anywhere on my body. It reminds me to how a light touch on my left cheek will trigger my TN shocks and pain.

I am on 200 mg x2 daily of Tegretol. I have been on this dose for almost a week. (I was at 200 mg before.) I don't know if the medicine has anything to do with it. I have side effects from the Tegretol that seem to be normal: dizziness, fuzzy brain, lack of balance, drowsiness, etc. I just wonder if this could be a side effect or if this is part of TN. (Anatomy-wise I don't think it would be due to TN but I'm not a doctor. lol)



I'm not a medical doctor either, Ihold. But my intuition from 17 years of talking to TN patients is that you need to call your prescribing doctor's office and let him or her know of this reaction. If you're getting pain triggers from areas OTHER than your face, then I'd suspect a potentially allergic reaction to Tegretol, rather than an effect of TN itself. The dose range you're using so far is also on the low side of thereputic.

You might need to be tried on a different med, such as Oxcarbamazepine (Trileptal) or Gabapentin (Neurontin). Another angle on this is that you could be dealing with some other neuro disorder entirely, as well as the TN. Let your physician guide you on evaluating these symptoms.

Regards and best,

R.A. "Red" Lawhern, Ph.D.

Resident Research Analyst, LwTN

I was very interested in your comment about a light touch causing pain from its origin to your trunk. Hopefully, you are under the care of a neurologist. He needs to evaluate this as soon as possible. I hope you find your answer soon and get back to us with his findings
God bless

Hi ihold, I am getting the same reaction to Topiramate (Topamax). I was on 200 mg. and have done a gradual withdrawal and am now on 50 mg. I can't get in to see my neuro til Oct. but am going to my gp tomorrow. My skin hurts so bad and gives me so many shocks I can't even shower properly. When I lay down the shocks go right through my body. Since I have lowered the dose they are getting better. I am on gabapentin which I have been on for a long time and I know its not that. I wish you luck. Like Red said go see your physician which is what I'm doing tomorrow...it take so long to get into a dr. here we rely on our pharmasists sometimes to help us here...they work closely with the doctors here since we are in a small town...but get into see your doctor. I wish you luck...let us know...Lauren

Thank you all.

Red: I'm so sensitive to so many meds that I'm worried it's a reaction to the Tegretol. But I figured I'd find out if this somehow could be part of TN too. I'm going to have to talk to my neuro.

Lauren: I had a similar feeling when I was on Topomax. It was terrible!! But with Topomax a touch to my skin would feel like a burn. These are like shocks. Ugh. I don't want it to be something else! Hopefully it's a reaction. Back to the doctor. Neurontin does nothing for me. Hopefully Trileptal does.

BTW: I wrote it wrong. My dose is 400mg 2x daily. A total of 800mg. How high do Drs make you go on Tegretol?

Nobody "makes" a patient go higher. If you aren't getting pain relief or moderation, you might be advised to go up to 1200 mg per day, but it's unusual to go much higher with Tegretol. Side effects are too significant.

I agree Red...my Dr. actually told me to go higher and I tried it. Went from 75 up to 200 and got deathly sick and I have called her office repeatedly and can't get in to see her til October...I called my pharmasist and he suggested a slow taper which I have done til I go see my regular doctor which I am seeing tomorrow. I have gotten myself down to 50 mg. and feel much better and can actually feel my skin again. I will never feel pressured to take another med or up a dose ever again if I feel it will harm me again.

Lauren, all of the meds used to treat neuralgia and many of those used in neuropathy are tapered up. Sudden high doses can produce reeally excessive side effects that a more gradual introduction would not cause. A wise doctor recognizes in their patients, not "customers" but "treatment partners", and listens to the patient's own reports of outcomes and effects.

Go in Peace and Power,