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Living With Facial Pain

Triliptal

#1

Used to be atypical trigeminal neuralgia and was on Tegretol then was diagnosed with “Idiopathic trigeminal neuralgia with concomitant continuous pain” and now this morning I start triliptal.
I have hope for this medication I’ve heard really good things about it but I am still nervous but hopeful so here we go

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#2

I had outstanding results with that medication for years! My fingers are crossed for you!

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#3

What dose do you take?
I am taking 600 mg for 3 weeks and i feel nothing.
900 mg make me very dizziness… i tried 900 mg for one week, the dizziness didn’t gone away.

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#4

I am on 300 mg a day of Trileptal but I am still on Tegretol and they are trying to wean me off slowly and Trileptal is still trying to get used to my body but it’s all trial and error dosage may go up or may stay the same it’s only been one week so time will tell but so far I’ve only had some discomfort in the beginning I had some drowsiness but I think that was from being on 400 mg of Tegretol and 300 of Trileptal at the same time but then they lowered my dose of Tegretol so the drowsiness went away am only a little tired but I think this is the right medication for me

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#5

You’ve probably heard that Trileptal can cause hyponatremia (severe low sodium level), so stay alert to that. I developed it after about three weeks of using Trileptal. I began to feel an overall weakness that worsened every day until I knew something was seriously wrong. It’s a good medication–and like all of them has possible negative side effects.

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#6

Absolutely yes I have read up on that and my neuro has warned me about that that it can cause (severe low sodium levels) I’m watching my diet and everything I eat and making sure I have enough but thank you for the reminder and I appreciate you looking out for me

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#8

Per WebMD: Take the medicine as soon as you can, but skip the missed dose if it is almost time for your next dose. Do not take two doses at one time.

Sounds like you have enough time between the two doses to take it now.

azurelle

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#12

I took this with great results until I developed a skin rash. Before that happened it was very effective with no side effects.

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#13

I have used trileptal with good success for about 18 months, but it’s failing me now. My doctor has added baclofen, which almost seems to make it worse. Touching or moving any part of right side of my face sends a shock through…even touching the left side of my nose makes the right side hurt. I can’t blow my nose! And I think I have maxed out on the trileptal because my sodium levels have dropped dangerously low a couple of times. I’m so frustrated. Any advice?

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#14

Trileptal (oxcarbazepine) keeps me pain free if I take enough of it. What that means is that as I have had breakthrough pain, I have had to escalate the dose half a 300mg tablet at a time. If your prescribed dose does not seem to be working well enough, don’t hesitate to call your health care provider and ask for an increase.
I started out 2 years ago taking 300 mg 12 hours apart with 150 mg in the middle of that once a day. Now it is about 300 mg three times a day, and maybe once a week 300 mg twice a day with 600 mg at bedtime.
Anticonvulsants have side effects. Do not take too much at once or too close together; nausea and vomiting are likely to result. The side effects I have are mental sluggishness, lack of alertness, and difficulty walking (I have MS anyway, and all anticonvulsants I’ve used for pain make that problem worse). However, the face pain wins, and I’ll put up with the side effects gladly.
I took carbamazepine (Tegretol) before I was prescribed Trileptal. Carbamazepine side effects were much worse, taking my functional life away, but I would do anything to avoid that pain, so I put up with it. Good luck with the Trileptal, I hope it works as well for you as it has for me.
Don’t get pregnant while taking this without talking to your doctor.

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#15

Increased Trileptal has worked for me. I couldn’t deal with the Baclofen either because I live alone and have to be able to function. I know there is a concern about the sodium levels, but isn’t there some way to improve that? Drinking Pedialyte, for example? I’m not a doctor so I don’t know, but that’s what I’d ask my doctor.
Your description of the pain you endure is identical to mine. Not being able to wipe my nose is awful.
When it seemed Trileptal wasn’t working any more, increasing it did the trick for me. The increase wasn’t very much. I hope there is some way you can try that.

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#16

I take it when I have flares - the side effects I get are mental slowness and gastric distress (I have to stay close to a bathroom.) I do not like the side effects, but when I am flared, it helps!

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#17

Lee – have you tried taking a low dose as daily meds? Usually Trileptal works best as a daily med rather than acute.

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#18

Still on 300 mg Trileptal they wanted me to go a little longer and see how I manage some days are good but some are bad I really think it’s time to increase the dosage and I do have plans to do that cuz I think it will help in the long run by the way I am having my appointment at the dentist next week and I have to get a cleaning done I am a little scared of what the aftermath will bring I hope Trileptal holds out for me and helps me any advice and what to what not to do would be appreciated how do you handle a dentist appointment?.

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#19

Trileptal gave me complete pain relief. I hope it does for you too. I was worried to go to the dentist as well but cleanings have gone fine.

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#20

its helping but not as much as it could be just need to find the right dose and that’s all up to my Neuro and he’s working on it I trust he will I’m hopeful feel better about my dentist appointment and how yours went. hope you continue to do well on Triliptal

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#21

Did you get good pain control on the Tegretol? I had pain relief on that but the side effects were too much - I couldn’t even read. Moving to Trileptal made my life livable again. My doc told me that having good pain relief on Tegretol was a good predictor of how well Trileptal would work, although I’m sure that’s not true in all cases.

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#22

No I had no pain relief on Tegretol at all it did not help me and I was on it for a very long time and got tired of it not helping so I told my neuro I needed something else and I had heard of Trileptal working and I was very happy to try it and hopeful and like you it has made my life livable again I hope Trileptal works out for you in the long

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#23

They have me on Trileptal 300 in the morning than 300 at night but now I have recently been prescribed 150 and I only take that as needed but it seems to not be working and I’m going back to my Neuro to try something else LOL I have an idea let’s just hope they go with it

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#24

Hi Squirrelygirl,
Fight on!
I swear by Oxcarbazepene, for the replacement of Tegretol.
It is also less taxing on the liver I understand. Once in a while I take maybe 75 mil Carbamazopine if pain persists.

Ask your Doc.
Si

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