Nystagmus (dancing eyes) on tegretol -- anyone on trileptal?
Posted , 3 users are following.
My question is: Has anyone has problems tolerating tegretol, but been successful on trileptal (or another drug)?
Here's the background. My family Dr is stuck on tegretol as his ONLY drug of choice for TN. I've been suffering for over 2.5 yrs and after multiple attempts can't get past 500mg (2 1/2 pills) of carbamazepine (tegretol) which does little for pain, without bringing on severe nystagmus, with my eye movement so erratic and severe that even with one eye shut, I can't walk without holding onto furniture or walls to keep from falling. I've endured trials of this at 6-800mg dosages for over a week on several occasions, with accompanying nausea and vomiting, with no change by week's end, and no additional pain control.
I've brought up other suggestions mostly to no avail. A year ago I strenuously pushed for a try at Lyrica (pregablin) which has helped a bit, but I'm up to 150mg 3 times a day and I'm still in pain over half the week, on average.
i started with atypical TN and for the last 18 months or more have had the typical attacks as well as the chronic jaw, upper face and deep ear pain I started with. This combination is now so severe at times (and now more than 50% of my life) that I am huddled with a heating pad covering the left side of my face/head, loaded with OTC pain meds, an earplug in the painful ear (to prevent a loud noise or draft from setting off another stabbing attack), unable to read, watch TV or anything else to pass the painful day away, just waiting for bedtime so that I can take the Rx sleeping pills and hopefully fall asleep for a while. I wake always with just the low-level jaw/face/ear aches I am now accustomed to living with, not knowing whether sometime in the next few minutes or hours I will once again be driven to my knees for the rest of the day with the rolling waves of pain, or if it's going to be a 'good' day.
i am now on day 6 of a relatively low pain period; I haven't gone more than 2 in a row in at least 6 months, and I'm still being very careful. I had a couple of waves of stabbing attacks last night but they ended after some heat and rest. I really overexerted myself yesterday catching up on housework, so might have inadvertently been a trigger. Today is good so far.
sorry, to have gone on so long, but I wanted to be complete. I hope someone has had a comparable experience with tegretol, or with the pain combination, and can offer suggestions. Thanks so much for hanging in long enough to get this far. Lol 
0 likes, 3 replies
Glor888 Callifur
Posted
Have you been referred to any specialists? Surely with your conditions it justifies an investigation. Or seek a second opinion.
I have TN on the right side of my face and I have had to reduce my dosage from 4 times a day to 3 times a day because my legs started buckling, never had that before, I think the 300mg 4xdaily was too much. I've had this condition on and off for approx 20yrs, then a remission suddenly for 6yrs and now it's back. My Dr suggested I take the full 200mg right off to get the nausea out of the way. I said I couldn't do that, not like before, so I started off with .50mg 4x day. Now I'm on 300mg 3xday. I feel nauseous all the time. It will be another two weeks before I'm on 1200 a day. This will not be enough so like the past I end up with 10mg of Amitriptyline at night and if still no good then 20mg. I found that to be just right. This time around I don't know how I will fair.
My pain is still the same with the feeling of an electric current going right thru my lower teeth, and when it's really bad it effects my ear too.
The Amitriptyline just makes me sleep a bit better at night but it does state it can take up to 28 days to notice any effect regarding the TN.
I'm still seeing my own Dr next week to see if I can see a neurologist. Meantime I'm still in pain until then, but I will have increased my dosage by 150mg. I will still be in pain.
I hope you get something sorted soon Callipur. Good luck.
Valkyrie Glor888
Posted
Callifur Valkyrie
Posted
As for a second opinion, I did have a referral to a neurologist about 18 months ago when I was only experiencing the atypical TN pain syndrome, but he did a very cursory exam at best (checked reflexes and looked in my eyes). He never touched my face or head at all! He did order a basic MRI which showed nothing. His report back to my family doctor consisted of a short note stating that I did not have typical TN but did have trigeminal nerve pain. There was no call-back appointment or follow-up by the neurologist. As the pain changed and intensified, I did some homework, and asked my family dr for another referral to a specific neurologist who seemed to have much experience with TN. After 6 months of reminding, I was finally told that he wasn't seeing new patients. I again asked for another referral, which I assume has been forgotten. My last visit I was in so much pain, I forgot to nag again. I have just (in the last couple of days) put together a list of local neurologists; there are only about 6 or 7. I plan to call their offices and find out if they treat TN, whether they are seeing new patients, and how long their waiting list is (it could be 6 months or more). Once I'm armed with this ammunition, I will once again visit my family doctor, on a day when I am coherent (lol), and try again.
I have been with this doctor for well over 30 years and this is the first time he has let me down. If my request for another neuro consult is not acted on in a reasonable time, that will be the last straw, and I will reluctantly have to switch doctors, with all the complications and explanations of health history etc that will entail.
Good luck Valkyrie. Without Lyrica I think my pain would be unendurable. Hang in there.