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When to take the Tegretol

Posted , 3 users are following.

Valkyrie
Valkyrie

I am wondering what time of day people are taking their Tegretol.

At first i was doing what the doc said and just taking it morning and night 12 hours apart but then i noticed it did not last that long and that i needed to take it in between also. I am now taking it four times a day by dividing up the amount the doctor said to take per day into four doses. Is anyone else doing this?

It is working less well now even though i have only been taking it since 7th July this year and i am looking into having acupuncture to see if it helps at all. I am only on a low dose at present being 500mg a day as i am trying to keep working but i dont know how long i will be able to do that unless i find something else to help. it takes months to see a neurologist.

 

1 like, 12 replies

12 Replies

  • alicot
    alicot Valkyrie

    Posted

    I couldn't do the drugs.  They stopped working after a month, had to switch to another one. I decided to end this by doing one of the surgeries.  I did a radiofrequency procedure with an very experienced TN doctor and that ended it, got off all drugs and got my life back. BUT it came back after 7 months so did it again only stronger. Am in the 6th month and so far so good.  I love the surgeries if they will just last.  My jaw is numb and it is hard to eat hard things but I don't care.  Prefer this over drugs.  Good luck with whatever you decide. Some people get relief with acupuncture. I couldn't do it because it cost too much and I really don't believe it would help me.  I could be wrong BUT???? Am going to try a medical marijuana oil when and if it comes back.
  • donna86115
    donna86115 Valkyrie

    Posted

    Greetings! I am taking the maximum dose of Tegretol - 1200 mg a day, divided into 600mg when I wake up at 6am and then 4:30ish pm because 1) you are right Valkyrie: the dose doesn't last the entire 12 hours; and 2) I want to be able to eat dinner at 6pm without pain. I have also been taking a Tylenol PM (only 1 tablet) to make sure I sleep through the night. But you can be sure that when I wake up the first thing I do is take my Tegretol. I am also taking Neurotin twice a day, too, in order to make the Tegretol work more effectively. I have been on the medications since the end of May and it is now working, but it did take a good 2 1/2 months to get the correct dosage and to give it time to work.  
    • Glor888
      Glor888 donna86115

      Posted

      Hi Donna, I would just like to ask you a question, when you take 600mg of Tegretol at 6am do you get any nausea? I just thought 600mg does seem a lot to take at once. I have to take mine gradually 4 times a day but I am also gradually building up until I reach 400mg. I've been taking them for 6 weeks now and still feel nauseous. I may have to stop the Amitriptyline at night as it's making me too drowsy. 

      I know it will take time.

      What is more annoying is taking them 4 times a day before or after food has caused weight gain. I'll be so glad when I'm down to 3 x daily.

    • donna86115
      donna86115 Glor888

      Posted

      Good question, Gloriana. My TN was in remission for about a year when it came back late spring. I had my old prescription which was 600mg twice a day and I started right away with that dosage, forgetting that I originally had started with a smaller dosage and had gradually increased it. So I was very nauseous AND dizzy. Then I made an appointment with my neuralogist, who got me in the next day and reminded me that I can't start on the highest dosage right away. I also started taking the medicine with food, although I don't think theoretically it is necessary. After gradually increasing the dosage to what I am taking now, I don't have the nasea and dizzyness.
    • Glor888
      Glor888 donna86115

      Posted

      Thank you Donna. Wow! I remember my Dr saying take the prescribed tablets (200mg) I think, straight away and get the nausea out of the way quicker. But from past experience I knew this wasn't for me. So this time my TN is back after 6yrs, weird! So she put me on 200mg once a day and I knew it wouldn't be enough. So I started off on .50mg 4times a day, I was nauseous and slightly dizzy too. 6weeks later I'm now on 300mg 4 times daily along with the nausea still. Only this time after the 3rd dose I started getting dizziness and buckling of my legs, I had to lay down. Consequently I slept on and off til 7.30am. I didn't take a fourth dose or my Amitriptyline at night. Today I've decided to keep to 3 times daily with Amitriptyline at night to see if that lessens the side effects. I've made an appointment to see my Regular Dr next Tuesday 16th. I didn't realise I could see a Neurologist so I will ask him.
  • Glor888
    Glor888 Valkyrie

    Posted

    I was first diagnosed with Trigeminal neuralgia approx 20yrs ago. At that time I think I was prescribed Tegretol 3 times a day and with much nausea and cold sweats one could ever tolerate. Eventually this was increased to 400mg 3 times a day. When I still had pain I was prescribed 10mg of Amitripyline one at night. The tablets made me ver y drowsy and still nauseous and sweats so much I ended up on the nice cold floor until it had passed. I was in this pain until eventually when everything settled down I was able to to continue without any side effects.

    This lasted approx 9 months then I had remission for 9 months and continued like this until I retired then it suddenly stopped. I was so relieved. Unfortunately 6yrs later it has returned. When I visited the dr she prescribed me 200mg of Tegretol a day. I knew it wouldn't be enough but I tried anyway, but because of my history I knew taking 200mg straight off would cause me the same symptoms as before, especially after my history and my dr suggesting I should take 400mg straight off 3 times a day until the nausea subsided as it would be quicker to get it out of the way. I declined. 

    So this time I took it easy by taking .50mg 4 times a day and increased it by .50mg 4 times a day for a week and continued that way over the weeks until I've now reached 300mg 4 times daily plus 10mg Amitriptyline at night. I'm still in pain and will be increasing it until I reach 400mg and along with the 10mg of Amitriptyline at night which I can increase to 2 at night if still in pain.

    im not taking 2 of amitriptyline at night as it makes me too drowsy. I'm hoping it will stop the pain by the time my schedule has finished. 

    This has been going on now for nearly six weeks so far.

     

    • Valkyrie
      Valkyrie Glor888

      Posted

      its very hard isnt it? just to make things more fun, i hurt my back two weeks ago and i am walking all sideways so if its not my face pain its my back pain. On the bright side, i made an appointment with anew neurologist who said they could not see mee til March. They had a cancellation and i see the guy Monday! I have a long list of questions.
    • alicot
      alicot Valkyrie

      Posted

      I have a problem with any doc who asks you to wait knowing you have TN. My TN surgeon gets me in right away because people cannot eat and are ready to kill themselves.  I guess there are different levels of the pain. MIne is off the scale.....so no waiting. If on drugs and they are working then waiting might be OK. The problem for me is that the drugs wear off quickly so waiting is really not an option. I would look for a TN neural surgeon who will see you right away.  My opinion is based on my condition and intolerance to those meds.

       

    • donna86115
      donna86115 alicot

      Posted

      I agree with Alicot. I called the neuralogy department of my healthcare provider, to whom I had just switched in January, and said I had TN, couldn't eat and could barely talk, and they got me in the next day. You shouldn't have to wait. 
  • Glor888
    Glor888 Valkyrie

    Posted

    Btw, Have you thought about increasing your dosages a little at a time?

    Oh no! My daughter suffers with her back and scoliosis for years, so she's been through it all. I do sympathise with you Valkyrie and wish you well on Monday. I agree you make sure you ask all your questions on your list too. I remember seeing one of the other Drs once at my surgery and asking him a couple more questions, he said you'll have to make another appointment, your ten minutes are up. My own regular Dr doesn't do that. So I'm not sure if it's the same at the hospital or if it's twenty minutes. I hope you get what you want such as X-rays etc.

    Yesterday was my first day on the next 50mg increase so needless to say by the time I had my third dosage the dizziness set in and after the evening dosage I was unsteady on my feet, I felt like I was tipsy lol. This morning I was nauseous as usual.

    As I've still got two more weeks before I'm finally on my full dosage I may have to skip the Amitriptyline at night, maybe sooner. I decided to make an appointment with my own Regular Dr to ask him about seeing a neurologist. A couple of people have actually stated they're surprised I haven't seen one already.

    Anyway do let us know how you get on Valkyrie, and good luck.

     

  • Glor888
    Glor888 Valkyrie

    Posted

    Hi Valkyrie. When I was first prescribed Tegretol I started off with 200mg X 3 a day gradually building up to 400mg x3 a day. I was fine with that but over the years in between the 9months apart the pain varied to high sometimes so the Dr added Amitriptyine at night. After a 6 yr gap I did the same and gradually built up to 400mg per day and the Dr prescribed Amitriptyline 1 at night. But because of my bad side effects the Dr took me off the Amitriptyline and gave me Gabapentine 300mg at night. She has now suggested I come off Tegretol because of my increased side effects and just stay on Gabapentyine to see how I get on.

    So it does depend on the individual. I would suggest you go back to your Dr or book a call after surgery hrs to request an increase in dosage and see how you get on with that before you book anything.

    Good luck and let us know how you get on.

     

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