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Tmj or Tn

Posted , 6 users are following.

expos81
expos81

Hi

Over Xmas I had the worst pain ever in the left side of my face. The pain felt like a constant dull ache. I saw 3 doctors and 3 dentists over the holiday period.

2 weeks ago I eventfully visited the dental hospital and they diagnosed it as TMJ. As soon as I got back home I felt as though I had all the right symptoms.

Last weekend I went to see a consultant and he said it was TN and totally dismissed what the dental hospital said. He told me to go on carbamazepine 200mg twice a day and then double it in a week. On the Monday I had my yearly check up with my MS consultant and she told me to take 100mg as and when I need it and only take when bad.

Who would you listen too? Both consultants at the same hospital and within days of each other giving me different dosage instructions.

I started on 200mg twice a day and for 4 days was awful. Sleeping all the time, awful headaches and generating awful. I knocked it down to 100mg and now feel a lot better.

From people's symptoms it sounds like its TMJ and not TN.

How do you guys feel with either of these?

What dosage are you on and do you too feel very tired. Or is this just a temporary thing until I get use to the pills?

Any advice would be brilliant.

1 like, 10 replies

10 Replies

  • Tmg72
    Tmg72 expos81

    Posted

    Hi, it's my Dad that has TN but I've been to all appointments etc with him.

    Dad was fine taking 200mg per day (100mg twice a day) until December then even 600mg per day couldn't control it. 600mg made him drowsy, double vision and he felt foggy.

    He got his Dr to refer him to a neurologist for further help. He had an MRI scan and it showed classic TN.

    He has now had gamma knife surgery, he's still taking 500mg per day BUT, he has adjusted to the dose and doesn't have any side effects now.

    A few things we've learnt from others and experience:-

    Take the tablets at regular times -

    Do NOT mess with the dose. Carbamazepine can cause problems if stopped abruptly.

    Get a proper diagnosis from a neurologist

    The weather really can affect the pain.

    It takes a while for your body to get used to the increased dose. (3 weeks for Dad)

    Hope that helps

    • expos81
      expos81 Tmg72

      Posted

      Thanks that really helps.

      Did he take the 2nd dosage before bed or about 6-7?

      How did it make him feel? I get no stabbing pains, no affect when talking, eating etc. Just a horrible dull ache. 60% of consultants,/dentist say is not TN and the other do. I'm down for another mri so hopefully that helps find the definite problem.

    • Tmg72
      Tmg72 expos81

      Posted

      Hi

      He would take the 2nd dose before bed, although at the start of December he upped to 3 tablets if he had pain and took that as needed, but we've now found out it's not advised to keep changing the dose.

      Pain wise he had a burning sensation near his nose/lip area, then his face would really itch (usually near his eye) but if he touched it he would get the shooting pains. If the wind touched his face it triggered the pain, as did eating, talking, drinking etc... This was when he was having bad days.

      We're not sure yet if the gamma knife operation he had in January has worked. He seems to have been in remission since a couple of days before the op!! It's helping that he can now tolerate the tablets and he said the itching has gone completely!!

      Good luck and hope you get sorted. I have seen how horrible face pain and you have my sympathy and best wishes.

  • donna86115
    donna86115 expos81

    Posted

    I had an 18 month reprieve from TN but now it is back, so I am back on carbamazepine and gabapentine. Yes I am sleepy and my mind is in a fog and I'm seeing double so I have headaches. The last time I do remember that it took awhile for my body to adjust to the medications, which is a problem since I work outside the home so I'm trying to figure out a schedule that I can be consistent with that allows me to be coherent during most of the workday while also taking the pain away. Tmg72 has great advice. Also, you want to use the minimum amount of the drug that works - although I suppose that's true for any drug. Please take care.
  • anna38464
    anna38464 expos81

    Posted

    I don't know. I am not a docotor but I have learned that carbamazapine is something that you need to take daily and it is not good to go on and off of it. I was extremely tired with  that medicine at first but now I am much less tired. I would see which helps relieve the pain(what dosage) if it does, but not on an as need basis. It's difficult when doctors differ in their opinions.They are the experts. I have just learned this about that particular medicine. I am now on 400 mg a day of tegretol(carbamazapine).

    Wish I could help more but everyone is different.

    Anna

    • donna86115
      donna86115 anna38464

      Posted

      Absolutely agree. I didn't mean to suggest that someone should change dosages, only that as one increases the dosages, if a lower dose works, stick with that one. But if someone is still feeling pain, increasing should be done and that dosage should be the one stuck with. But I suppose that is obvious. 
  • expos81
    expos81

    Posted

    Hi, I came out in a rash this morning and have been told to come off these due to this.

    I went to see my chiropractor today and told her about the different diagnosis and when she had a look at me she seemed certain it was not TN.

    She found 3 pressure points on my muscle which nearly sent me to tears when she lightly pressed. She released my neck as it was very tight (I think working in bed on my laptop is not ideal but only way at the min due to how I am feeling).

    She has told me to keep pressing the 3 areas each day, doing exercises and try toget some pain relief for the muscle spasms.

    Everyone is telling me different things!

  • angiegirl
    angiegirl expos81

    Posted

    It's very very hard to know which advice to take because all we want is for the pain to go and to have 2 different diagnoses it sends your mind into a total panic. It is usual to feel like crap when you first start on Carbamazepine and it takes a while for your body to get used to it but read the blurb that canes with the pills as it is quite important.    You can get information from the TN Association on line so you could try to get an idea of weather it's TN or not.      Must stop as battery is going
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