Hi everyone. I got the diagnosis of ?TN on Tuesday after not standing the pain any longer and turning up at an ER. The ER doctor prescribed Oxycodone and Tegretol. She said to me use the 200mg CR Tegretol once daily and see my doctor next week for a refill and he will sort out dosage etc.
So I have been suffering (the pain is dulled a little with the Tegretol) for 4 days now on the dosage she gave me. Looking up Tegretol on my country's medicine information network it says for TN patients Tegretol should be titrated daily upwards until optimal results are obtained (it says usually 200mg 3-4 times daily) ... so basically I have been on 1/3-1/4 of the dose most patients find helpful.
What sort of dosage are others on that they find helpful? Should I be mighty ticked off that I have suffered when my dosage should of been sorted out straight away? Do I go to a doctor tomorrow and jump up and down and demand enough Tegretol to titrate myself (I'm an RN so I am sure I could do it myself!), or perhaps I should of been an inpatient this whole time so they could of sorted me out?
It’s sometimes awful in the beginning to walk through the pain and side effects from the meds. Back when I first began my trec down the TN road, tegretol was started about three months in to the pain when neurontin was not working very well. 200 mg p/ day was the starting point and after one week, another 200 mg dose p/ day, and on it went until I settled on 800mg p/ day in divided doses. The pain disappeared but the side effects were awful. Feeling zombie-like was an understatement! This med needs to be titrated up and down very slowly and carefully. Never stop this med cold turkey and please be sure that blood tests are given every 90 days, as per doctor’s discretion. The neuro I was seeing at fhe time never drew blood. I was furious when I found out online this was standard good practice! My eyes were yellowing along with my skin, so this is a serious med to keep track of in your system. Taking it slow in titrating up is really the best. You can use this site to find treatment and med options for TN. Just do a search in the upper right area of the page.
Blessings to you!
LyndaS
Tegretol takes some time to acclimate for many people. The dosage is low but it would be hard for your body to cope with the full dosage in one go. Your Dr has done the right thing in titrating up slowly. A previous Dr of mine put me on 1000mg immediately, it was worse than when I had chemo. I thought I would die.
You would be more ticked off at the side effects of a massive dose. I personally cannot see any advantage of being an inpatient while titrating unless it was making you ill.
Everyone is different but I was maintained on 800-1000mg per day, just my story not a recommendation. That must come from someone qualified which I am not.
There is something more than a little haywire in the advice to titrate upward by 100 mg per day, Porcelina. 600 mg of Tegretol within a week can put some people into seizures. I know it hurts. But don't try to second-guess the prescribing doctor. He gave you a schedule of titration that was based on specific medical training and experience.
It took me 10 days until I felt relief. I started on 100 mgs twice a day and went up slowly from there. Everyone is different. Will be thinking of you and hoping that the pain free day will come sooner for you.
Hugs
Collette
Asmara said:
You need to wait at least one week before you can see results and change the dose.
Thanks everyone. I guess what I read was wrong (maybe someone should tell them considering it's a document that health professionals go by!). If only my area of expertise was neurology but it's not :) The ER doctor did say that my family doctor may even change it to Epilim but I think because it's slightly dulled with the Tegretol I'll stick with that for now. I'll be hanging out for my appointment on Tuesday and having never met my family doctor (I've been with that clinic for 2 years and it has about 15 doctors and you get who you can get) but I have an appointment finally with him I hope he is nice and understanding.
I've been on Tegretol for 9 mo. and am currently weaning off of it after MVD in January. Anyhoo, I "good" dosage routine was 200mg tablet in the morning, 1/2 a 200mg (so 100mg but I would just cut my tablets in 1/2) in the afternoon and then another 200mg at night. If I needed to, I could do a 200mg in the afternoon but I was on that dosing schedule for months and it worked well for the most part. It prob took me 3+ months to get there though ... a lot of back and forth with the Dr. I also added in Lyrica which helped some some pains that Tegretol didn't take away for me. Good luck!!
Also Tegretol CR is meant to last longer (up to 12 hours) so that you dont have to take it 3 times a day. Oxycodone is also good for shooting pain. I hope you managed to see your doctor by this time. Good luck.
My dad is on Neurontin 2400 mg daily and not touching the pains. Recently brought him to ER for excruciating pain and they gave him a 2mg shot of dalaudid. That helps, but only for a while then pain comes back. The neurologist suggested Tegretol. Has anyone had good luck with using this drug?
Please help if you can. It would be greatly appreciated.
Tegretol has been the primary medication of choice in TN for manyt years, Lynnette. It must be tapered up over time, and a doctor should establish the schedule. Neurontin will need to be tapered down, either first or at the same time.
I found that taking Carbamazepine, also known as Tegretol, slow release was more effective. I could avoid the highs and lows from meds. I take 400mg cr am and pm. The cr stands for slow release. I would ask our doc if they thought a slow release could better help your pain management. All the best.
Thanks Red and Patty. My dad had a very bad weekend and I had to take him to the ER Saturday morning. He has it really bad. We want to try any meds that may help before having the MVD done bc it's so invasive. We want that to be the last resort. Thanks again for caring enough to reply and help me to figure out what to do. It's very hard seeing a loved one in so much agony. His pain is becoming more frequent with less intervals of relief.