New TN paitent

Posted , 7 users are following.

Hey all I have just been diagnosed with TN and am taking 400mg of Tegratrol it seems to be working decent but not complete. The ENT has switched me to TEG ER has anyone used this. I'll take my first dose tomorrow. I'm up now because the pain is back and can't sleep. I really thought I was mental because nothing could hurt this bad. I was feeling week and a burden to those around me, that hasn't changed much even though I know what's wrong now. Just feeling bummed.

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15 Replies

  • Posted

    Hi

    I haven't heard of TEG ER but I take Tegretol and believe that 400mgs is quite a low dose. Some of the sufferers take up to 1600mgs to control their pain but this is down to the individual. Just be careful as you should increase this very slowly to avoid the side effects.

    You could speak to the Pharmacists and they might be able to help you, also google it as this will give you a lot of information.

    Hope this helps.

    Take care

    Alison

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  • Posted

    ......and don't forget to reduce your dose gradually if you find that you are going into a "quiet" period. If you stop suddenly then you risk a seizure.

    I agree that your current dose is rsther low, everyone is very different of course, but I need about 800mg spaced out during the day as my maintenance level.

    Keep safe

    Cheers

    Big D

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  • Posted

    Hi,

    I'm recently diagnosed with TN. I'm taking carbamazepine er which is tegretol.

    I was started on the same dosage you are on. It helped but not enough. The

    Pain was still unbearable. When I breath thru my left nostril the pain hits &

    Travels down the left side of face, jaw, ear & teeth. My left temple swells up

    & I can't touch it without triggering another attack. I let my neurologist know &

    He increased my meds to 600 mg a day. I take 2 in morning, 2 midday

    & 2 at bed time. The increase has helped me so much. Talk to your doctor

    & ask about increasing your dosage. Do not increase on your own. Hope this helps.

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  • Posted

    Hi there MM, the ER after Teg probably stands for Extended Release. That just means you are getting it constantly till your next dose. My Neurologist has me on Gabapentin, which is Neurtion. I take 300 mg 4 x a day. This is 1200mg. All our systems take these medicines differently. I was put on Carbamezine first and I was a total zombie. I wish you all the best........stay in touch with our group.
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  • Posted

    Hi, sometimes you need to try different drugs because some work better

    than others for each person. I tried Gapapentin and Pregabelin (not sure of

    the spelling). I couldn't cope with either of them so went on to Carbamazepine

    aka Tegratol. I started with 200mgs 4 times a day. I'm now taking 400mgs

    4 times a day plus 100mgs of Amitriptyline at night. The levels are high but

    they no longer work to provide adequate relief plus the side effects are

    horrendous. Don't let it get you down too much and don't whatever you do

    stop the Tegretol suddenly or without your doctor's supervision. Hang on

    in there.

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  • Posted

    I'm on 800mn of carbamazepine (Tegretol) per day. This controls the pain. But there are still flares and if it gets really bad I take a norco and an ibuprofen. This is on the advice of my neurologist. It works well. The intense and persistent pain is gone in 20 minutes. Good luck to you!

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  • Posted

    Thanks for the kind words everyone, The tegretol extended release seems to be working it's 400 mg twice a day. I went out and helped my son work on the Jeep today. It's the first time in a week I've done anything but sleep. The pain was almost gone I felt like I had been let out of prison. I'll keep in touch here I'm sure I'll need some encouragment from time to time. 

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  • Posted

    I guess too much excitment and I had 2 major episodes last night. I switched back to the Tegratol and have had no more episodes. Looks like 800mg of Treg until I get back to the Dr. I feel so bad for my wife, she want's to help but there is nothing she can do when the pain starts. How do you manage work with this disease? 

    Mud

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    • Posted

      It's really hard on partners to sit and watch us go through so much

      pain and feel helpless.There's some really good info over on

      [b]http://www.tna.org.uk/pages/carers[b].html I know technically they

      may not be our carers, but it may be useful to read. They also

      have a wealth of other info on TN that I've found invaluable.

      As for work. I've not been able to for some time. I suppose I'm lucky

      that I've just turned 60 so was able to retire early. It wasn't so bad

      when the attacks had periods of remission and could be managed

      withTegratol. Once the periods of remission got shorter and the attacks

      lasted longer, the Tegratol became less effective and had to be

      increased to levels where the side effects have impacted greatly on my

      ability to function properly and safely anymore.

      I suppose it also comes down also to what kind of work you are doing. I

      was a primary school teacher, responsible for a class of 30 5 year

      olds. Not easy to deal with when you get to the stage where

      the pain brings you to your knees and you want to scream or when

      you can't open your mouth to speak because you know when you

      do it will trigger an attack.

      I'm sure there are still some here that do still work and I have the

      greatest of respect for them. They may be able to tell you how they

      continue to do so and be a bit more positive than I've been about

      it.

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  • Posted

    The tegratol was devastating me and I have quit taking it so I could stay awake. I have been pain free for about 2 weeks until tonight. I had to go back to work to support my family and as I write I can feel a major episode coming on. It starts with a burning in the left side of my throat and whithin an hour it will be full blown mind numbing pain. My left eye is starting to swell shut and pins and needles on my cheek. I'm 500 miles from home so it should be a fun night. I'll take some Teg when I get to a place where I can lay down in the dark if I can make the 60 mile drive. Was hoping to be in remission but not so lucky. Really hating this crap.  

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    • Posted

      Hi MM. I hope you got the 60 miles and took medicine. And I sincerely hope it helped. MM....I honestly believe you need a different medicine. There are many out there to treat TN and there is one out there you will be able to take and still function. I'm on neurotin cause I could not function on tegradol. Please talk to your doctor and get him to get you on a different medicine and be able to function. Please let us know how you made out. And Yes, I agree with you, I hate this stuff.

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