1. Community
  2. Brain and nerves
  3. Trigeminal Neuralgia

Diagnosed with atypical trigeminal neuralgia

Posted , 8 users are following.

vicky59618
vicky59618

Finally seen neurology and confirmed diagnosis of atypical trigeminal neuralgia waiting mri neurology changed my carbamazapine to slow release tegretol I'm on 400mg am and night and 200mg in afternoon I'm still struggling with breakthrough pain which consists of migraine type pain above left eyebrow burning stinging pain around left eye and annoying facial pressure it varies from feeling like I've been to dentist and the weird sensations you get right before local anaesthetic works but this pressure goes from right side to left it is associated when I drink warm drinks but it's also present without any triggers it actually feels like someone is kneeling on my upper gums and lower face it only used to be bad on lying down but now it's there when I'm sitting and even standing does anyone else get this I've had a ct sinus but no results yet but my neurologist was confident it's all neurological

2 likes, 28 replies

28 Replies

Next
  • Valkyrie
    Valkyrie vicky59618

    Posted

    I had Lyrica added to take care of the breakthrough pain. Works ok as long as I don't try to take more than 450 Lyrica a day at which time I start getting twitches.
  • lillypink69
    lillypink69 vicky59618

    Posted

    hi. i was diagnosed with TN in jan and have now been put on slow release carbamazapine but was told by neurologist to play around with them so i take 200mg at 9am then every 3hrs until 9pm then i take 400mg. i was also put on baclafen 10mg 3xday. i get breakthrough pain with no prompting and pain in my eyebrow and cheekbone, i was told i have it in V1, not the common zones although i dont have it everywhere in the V1 nerve zone eg not in back of head. i dont think there is a right or wrong way to have symptoms with TN,i pretty much feel it is a law unto itself, it is just about trying to get it under control with meds and playing around with different ones until you find a combo that works for your body, everyone is different. i have no idea why they use baclofen for TN as it is a muscle relaxent but i think it is having some effect, either that or its because i have changed the type and time of my carbamazapine.
    • vicky59618
      vicky59618 lillypink69

      Posted

      Hi was thinking of starting my amitryptilline again cos that helped a bit I really don't like taking all these tablets but I think it's something I'm just gonna have to do its better than being in pain my carbamazapine is slow release I've only been on it 2 weeks up to now though I think I preferred the normal release I think at a higher dose it may have done the trick
  • Valkyrie
    Valkyrie vicky59618

    Posted

    Adding the amitryptilline to your tegretol is a very bad idea unless advised by a Neurologist as these two drugs are not generally taken together as they can have serious side effects. Lillypink69 has the right idea I think. I am taking 900 slow release tegretol so the 200 you are on is a very low dose.
    • vicky59618
      vicky59618 Valkyrie

      Posted

      Trouble is I have 400mg and 200mg tablets and gp told me not to break 400mg as u don't know whether you are getting 100 or 300mg I'm on 1000mg daily it was gp who added 200mg for afternoon neurology just changed my dose from 600mg to 800mg twice a day no advise as to take when
    • vicky59618
      vicky59618 Valkyrie

      Posted

      Hi there I checked today with a pharmacist amitryptilline is ok to take with tegretol for trigeminal neuralgia it's with epilepsy it's contraindicated she also said it s fine to half 400mg tabs tegretol I'm currently taking 200mg every 3hrs and I've got persistent migraine like pain above left eyebrow so gonna try amitryptilline to see if any improvement it's the only other thing I've got
  • eddie13
    eddie13 vicky59618

    Posted

    Vicky,

    I've found that distribute evenly over time is very important. Seems you describe a dull pain. I find that comes and goes over time. Perhaps you need a higher dose. Talk over with your doc. I'm on a 200 mg pill every 6 hours. I use phone alarms.

    eddie13

    • vicky59618
      vicky59618 eddie13

      Posted

      Gp only just added the 200mg for afternoon he also advised against splitting the 400mg
  • lillypink69
    lillypink69 vicky59618

    Posted

    the problem with normal carbamazapine is as soon as you take it you get an instant hit from it then it tails off, so if you are suffering from side affects ie tiredness then you will feel the overwhellming feeling about an hr after u take the tabs, if you switch them to slow release you dont get that hit of tiredness an hr after taking them. so to explain better.... normal pills, take them then big hit an hr after then tail off, then big hit next time then tail off and so on,.... slow release.... take them you get a little hit then stay stable for long time then tail off then take one get a small hit then tail off etc, so it keeps your pain cover much better under control. i have spread my 1200mg evenly through the day and has made a difference, ok its bugging me to have to take them every 3hrs using my fone alarm but not as much as the pain is bugging me when its not under control.
  • lillypink69
    lillypink69 vicky59618

    Posted

    valkyrie i am on 1200mg of carbamazapine and i have twitches, a small price to pay for keeping pain under control. you have to weigh up the pros and cons for your individual situation. for me i am desperate to have no pain what so ever that reminds me what i went through as every time i get electric shocks it all surfaces and i get upset n worried. i have also just been put onto 10mg of baclafen but there are alot of combinations of meds you can try so dont give up hun. i still get small breakthrough pains every dsy but im still trying different things and im slowly getting there.

     

  • lillypink69
    lillypink69 vicky59618

    Posted

    VICKY i was on 400mg morning afternoon and nite but was told by neurologist to play around to find what works for me so i now take 200 at 9am 12pm 3pm 6pm then 400 at 9 at nite. it took about a week to feel the results, its not gone completly but i can defo feel progress.
    • vicky59618
      vicky59618 lillypink69

      Posted

      Thanks 4 all ur advice guys do you split the 400mg tabs then it does make a lot more sense and when I have to get prescription I'll ask them to do just 200mg tabs
  • lillypink69
    lillypink69 vicky59618

    Posted

    hi vicky at the moment i am breaking my 400mg tabs in half as they have a groove half way along the tablet and therefore taking 200mg every 3hrs except nite time when i take 400mg as i find this helps me sleep better aswell. but if your not happy breaking them in half then just get your prescription altered to 200mg tab instead of 400mg ones.
    • vicky59618
      vicky59618 lillypink69

      Posted

      I always thought you could half tablets with a score line as tegretol do it was just my gp said it's not ideal as you don't know whether you are getting 100mg 200mg or even 300mg that's why he gave me 200mg tabs for afternoon dose but I think tomorrow I'm gonna try and score them and just have 400mg on nite anything s worth a try
  • lillypink69
    lillypink69 vicky59618

    Posted

    cant you go back to your docs and discuss getting some more 200mg so you can find a better program for you to follow? you know how you feel and when your pain is and i believe you should have the right to play around to a degree to find a plan that works for you after all your the one in pain. its a very scary pain to cope with and i know i wanted to hurt myself before i got it under control and for me any slight intensity of pain sets off a fear trigger in me, i have suffered with fibromyalgia after a very bad viral infection 9yrs ago so i am used to living with a certain level off pain but this TN blew that ability right out the water :-/
    • vicky59618
      vicky59618 lillypink69

      Posted

      Yeah I was thinking of doing that thank you you have been very helpful x
Back to top
Next

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.