Tegretol xr and trigeminal neuralgia

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Please help I've been taken (with the success so far) tegretol xr 1600mg daily but taking 200mg every 3hrs until bed then taking what's left of daily doses usually 600mg I still get breakthrough and still get my 3day flare up which is not as bad but bad enough problem is my pharmacy suggest I see gp as he says it's not appropriate to take a controlled release drug like this I'm very reluctant to do so as I don't want them when they've been very ignorant of my condition since December to now step in and tell me to change how I manage it I'm also back at work 3x 12 hr shifts a wk and don't wanna end up back at square 1 any suggestions or should I just lie

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15 Replies

  • Posted

    Hi Vicky

    You should as the Pharmacy suggests go to see your GP - Tegretol in large doses over a long time can lead to liver damage - so at least annually your GP should be giving you a liver function test. The last one I had was a while ago and fine as I am on a low dose .If you are on that kind of dose and still getting flare ups it may be time to discuss a better drug - Tegretol is usually given for epilepsy and it's use for TN was discovered later but is only really good if it works for the patient - there are other drugs which may work better. Your GP should have you on a meds review timetable and if you don't attend they can stop your medication (unlikely, but they can - they usually make you go and pick it up from the GP him/herself).If you are not happy with your GP - perhaps look at getting to see a private GP with TN experience, or perhaps call your GP and ask for a referral - (I am frankly amazed they haven't already referred you).

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    • Posted

      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.

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    • Posted

      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

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  • Posted

    Hi Vicky

    Ask the SURGERY if they have ANY doctors with experience with TN.

    Review the answer and then confirm the GP with the 'experience' does have genuine recent experience. Interview this individual yourself.

    Then ask for a referral to a suitable specialist in your area as well.

    Nothing says You have to accept Your allocated GP if he/her has no recent experience in Your long term problems.

    I had to 'drive' my GP to research my problems. I provided some wen sites and fortunately he was very positive in the way he responded so we learnt together.

    If You aren't happy with the advice given by your GP you are entitled to request a change.

    GOOD LUCK

     

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    • Posted

      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
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    • Posted

      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”

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  • Posted

    vicky

    this is not an issue for a general practitioner. you should be under the care of a specialist in this case a neurologist.

    i took tegrotol (carbamazepine) for two years with varying degrees of success. it made me drowsy and twitchy and i was not taking near as much as you.

    two weeks ago neurologist changed my Rx to oxcarbazepine which has made a big improvement in my pain level. she also put me on tramadol which also helps.

    i had microvascular decompression surgery on 6/3/16. neurologist says nerve can take 6-12 months to heal. new meds are making a positive difference in my life.

    db

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    • Posted

      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.
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    • Posted

      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 diseasesad

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    • Posted

      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.

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    • Posted

      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??

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    • Posted

      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)

       

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    • Posted

      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 sad

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    • Posted

      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.

       

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