Tegretol xr and trigeminal neuralgia

I agree with Mike, you should see your GP. I've just changed from Tegretol to Oxcarbazepine with success. You could request a referral to both pain specialist and Neurologist.  It's worrying that you're not having regular blood tests.

It was neurologist who put me on tegretolxr from normal carbamazapine but she put me on 400mg am pm and I was really struggling and in loads pain the gp then said I could take 200mg afternoon that wasn't enough so I went back and gp then put me on maximum daily dose for tn I don't see neurologist again till October she said we can add more drugs but never put me on any so I feel like cos I've been given diagnosis that they now not interested and can't be bothered

Your lucky u have your gp as mine clearly is not bothered the last time I went was to discuss my tegretol and mri results which they found a type 1 chiari malformation I told her I believe that this could be causing the tn and she said I could write to my neurologist. ... yeah right thanks for nothing

I got this from a search on Google on this:  can a chiari malformation cause Trigeminal Neuralgia. A site came up called Trigeminal Neuralgia- a symptom of chiari malformation

“Therefore, we conclude that Chiari type I malformation causes trigeminal neuralgia by compression of these fibers around the foramen magnum. In the past 2 years, several articles have been published on bilateral trigeminal neuralgia in the setting of Chiari I malformation, which seem to corroborate our hypothesis.2,3”

Thanks I am under a neurologist she put me on tegretol xr trouble is the appointment s are few and far between 😡

I know what you mean about Neurologist appointments being few and far between. Mine are 3 mths wait when I want an appointment so when I see the Neurologist, I immediately make the next appointment just in case I need it. I have been without pain since April this year but I have an appointment next month. When they send me the reminder that my appointment is due, if I don’t need it I cancel and make the next one another 3 months away.  The receptionist told me that cancelled appointments are given to anyone who has rang for an appointment and who is in pain and can’t wait 3 mths. Also the Neurologist keeps a few appointments aside for the same reason.

That's good that they do that I spoke to gp last wk re tegretol dose she said at this stage they might try to reduce dose I said at this stage I'm still having pain an still get usual 3 day flares she said she thinks it's ok for me to take the dose but if flares continue she will contact neurology and get earlier appointment it's such a horrible disease

Have you tried Tegretol CR? It's a controlled release tablet which spreads the drug throughout the day and evens things out a lot. I found it lessened my side effects. I had to switch onto it one dose at a time, 5 days apart which the Neurologist did not tell me. They said to just switch over which I found out was a great way to get instant pain. I did it my way. Much better.

Yeah these are controlled release and I've found much better relief taking 200mg every 3 hrs so drug stays in my system pretty much all the time I'm also on 30mg amitryptilline at night everyday at several intervals I get that facial pressure like sum1s applied a tens machine to my face when I'm having flares I get sharp shooting pains around left eye and ear and a horrible gnawing like pain around left eye the flares aren't as bad of intense since taking higher doses and amitryptilline helps with the residual pain the sharp shooting pain leaves behind but I still can't believe I'm getting these flares it's lyk 3 bad days of pain and attacks and it really makes me feel shaky and unwell??

My 900mg per day of Tegretol slow release is split into 3 doses which is morning and night 400mg and 100mg in the middle of the day and I also take at the same time Lyrica 125mg 3 times a day. I am afraid to say that my Gamma Knife Op last year may have worked in case the pain comes back again and proves that is not true. I have had no pain since April this year and I am beginning to reduce my Meds in about 4 weeks when the weather warms up (it's winter here)

 

I was hoping the summer would bring better relief but I found the heat sometimes aggrevates mine especially so when having a flare up I'm thinking the neurologist may suggest another tablet and I don't know about you but I'm finding recall of words difficult it's like I have some form of expressive dyspgasia and I find it embarrassing

Wow, my Neurologist was completely different to yours. He said he can only suggest a regimen of when to take the meds as everyone with Tn is different and I will just have to try things out. I have been my own guinea pig for years now. that works best for me. When you get to the Neurologist ask about Gamma Knife. It doesnt hurt and for a lot of people the relief is instant. I can really recommend it.