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Starting on Tegretol

Posted , 6 users are following.

alison42350
alison42350

Hi

I've just started on Tegretol and have been taking 100mgs x 3 per day and the side effects are horrendous, is this normal?

0 likes, 33 replies

33 Replies

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  • karen36710
    karen36710 alison42350

    Posted

    Is your pain gone?  If yes see if you can reduce the meds.  I also had horrible side effects.  I am off all my TN drugs now and the pain is more tolerable than the side effects.

    good luck

  • holly35803
    holly35803 alison42350

    Posted

    Everyone has different reactions to medications. I take a small amount of Tegretol with almost no side effects. When I increase the dose slightly I experience some confusion and aphasia, otherwise Tegretol works well for you.

    Are you on a high dose? As the other poster asked, does it help the pain? What side effects are you experiencing?

  • Stupid1
    Stupid1 alison42350

    Posted

    Alison42350,

    Took tegretol when I made my dental surgeon remove a perfectly good tooth, I have a lot of allergies to meds and my side affect to that med was to throw up with the first pill.

    My neurologist started givinng me 300 mg x 3 Gabapentin and added 150mg x 1 oxcarbinazapine, i take the combined meds b4 I go to bed, I call these my nity nity pills.

    Check out website about Trigeminal Neuralgia and vitamin b12, shots and (b12 methylcobalamin aka the natural not man made b12 get it from your natural food store, get the under the tongue on, please don't get the cheap one made by a lab.

    Ask doctor what does b12 shots do for u after u ty

    google:

    Trigeminal Neuralgia and B12,

    u will get a lot of information as to y we get Trigeminal Neuralgia I am going to get my first b12 shot from my Primary Care Physicia but will continue to take Methylcolamin the natural B12, not made in lab made B12 vitamin..

    God Bless

    Us And Keep Us And Give Us Peace

    Happy New Year Everyone

    • Tnhurtsme
      Tnhurtsme Stupid1

      Posted

      I will be looking into that because i feel like my oxcarbazpine is not working anymore
  • saaz79347
    saaz79347 alison42350

    Posted

    Hi Alison,

    I was taking upto 800 mgs / day before my surgery and yes i could feel the side effects. Like others have said in this discussion, the side effects are diiferent and in varying degrees for different people. I experienced fogginess in my thinking, and reaction time. Some weight gain. Generally just feeling very lethargic. Blurry vision. I tried Gabapantin and that didn't work for me but Tegretol worked to and extent to control pain maybe 50 percent of the time.  Another doctor suggested me to try, Trileptol, or Lyrica but i never did. You may want to ask and try those to see if they control your pain and have less side effects for you. I have heard of people taking a cocktail of different meds but you really should ask your neurologist about it. For me it was simple , the TN attacks were so bad that the benefits of the meds easily outweighed the side effects.

    • alison42350
      alison42350 saaz79347

      Posted

      Hi

      Thanks for your comments. I'm just at the start of the TN journey (although I think I've had symptoms for a few years) so have to weigh up the options and decide if the side effects of the tablets outweigh the pain/symptoms. I'm going back to the GP this week to review meds. All the best Alison x

    • saaz79347
      saaz79347 Tnhurtsme

      Posted

      Micro Vascular Decompression / Brain surgery with partial rhizotomy. So far no TN pain and completely off meds but PLENTY of troublesome side effects. Just have to learn to cope.
  • jill55165
    jill55165 alison42350

    Posted

    HI Alison

    Like you I have been on Tegretol and many other medications to treat my TN and the side effects were terrible.  The last one I tried was Pregabalin, despite having side effects which again are not nice, this was the only medication after trying many that was OK for me.  You just need to see how you go and if you find that it doesnt suit you go back to your doctor, neurologist or neurosurgeon and say they are not suiting you.  You have to be able to function on a daily basis when taking medication not feeling like a "zombie"!  Please let me know how you get on!

    • alison42350
      alison42350 jill55165

      Posted

      Thanks for your posts. I'm going back to the GP this week to review. I expected some side effects but the headaches are scary and they got worse by day 3 so stopped taking them but need to assess what is worse - side effects or the pain x

    • patyrod
      patyrod alison42350

      Posted

      I had a terrible reaction to Tegretol.  It almost completely wiped out my platelets and gave me a fever.  I was so weak that I fell in the shower.  I had been taking it for about a month.  They took me off it.
    • Tnhurtsme
      Tnhurtsme alison42350

      Posted

      Sometimes the side effects suck but the face pain is painful i cant take it
    • Tnhurtsme
      Tnhurtsme patyrod

      Posted

      Has gabapentin weaken to where it isnt as strong as when you first started ive only been on it a year an it isnt very strong anymore an oxcarbazpine is doing the same thing only in 9 months what is there to do i have trigeminal neuropathy as well
    • patyrod
      patyrod Tnhurtsme

      Posted

      I have been taking Gabapentin for only a month.  What are your symptoms of trigeminal neuropathy?  Mine are bilateral numbness of the face, scalp, mouth and nose.  I also get pains in those areas.  My doctors say that I am the only person they know of with my condition.

       

    • Tnhurtsme
      Tnhurtsme patyrod

      Posted

      Pain with my forehead stabing burning thobbing pain the teeth is the worst ive been on gabapentin for over a year to me i can take alot an it does hardly nothing now im scared that my have to do surgery intervention with burning of the nerve with stero riztomy something an or gamma knife
    • patyrod
      patyrod Tnhurtsme

      Posted

      That is strange.  Why is your doctor calling it neuropathy instead of neuralgia?
    • Tnhurtsme
      Tnhurtsme patyrod

      Posted

      He doesn't i think its neuropathy because its constantly debilitating and I can't take it so I'm on meds I've been on it for year

    • patyrod
      patyrod Tnhurtsme

      Posted

      Oh, I see.  Well, my rheumatologist told me that trigeminal neuralgia is only pain and that trigeminal neuropathy is numbness and pain. 
    • Tnhurtsme
      Tnhurtsme patyrod

      Posted

      Oh ok well maybe just is trigeminal neuralgia but from a virus after a ear infection
    • patyrod
      patyrod Tnhurtsme

      Posted

      Yes, I think it is neuralgia because of the intense pain you are feeling.  I am lucky because my pains are not as frequent or intense.  I am unlucky because my whole face and mouth have been constantly numb for over a year.
    • Tnhurtsme
      Tnhurtsme patyrod

      Posted

      Does it tingle on your mouth an face or hurt really bad
    • patyrod
      patyrod Tnhurtsme

      Posted

      It feels like I had permanent Novocaine shots all over my face and scalp and all over my mouth.  The numbness never goes away.  The pains strike different areas in my face, mouth and teeth.  I get stabbing pains, needlepoint pains, tic pains, just about every kind of pain, but luckily they are not as frequent or intense as the trigeminal neuralgia ones.  It is probably because my trigeminal nerve is inflamed.  There is not a vein or artery compressing the nerve.  So, unfortunately, there is no surgery that would help my problem.
    • Tnhurtsme
      Tnhurtsme patyrod

      Posted

      Thats rough can you still taste food atleast or did you loose that too
    • Stupid1
      Stupid1 patyrod

      Posted

      Patyrod,

      My MRI did not show anything pressing on anything, yet My Neurosurgeon(( told me that he has released me from his care, and told me to do a follow up with my Primary care doctor )).

      My primary care doctor said she is not a surgeon so what is she supposed to do for a 6-month follow-up for his MVD surgery that he did on me. Once MVD was done these NeuroSurgeons don't let the door hit them,

      on the way out the door.

      God bless us and keep us and give us peace.

    • patyrod
      patyrod Tnhurtsme

      Posted

      Yes, I did lose some taste.  Unfortunately, I can still taste sweet things.wink

    • patyrod
      patyrod Stupid1

      Posted

      That is unfortunate, Stupid1.  What kind of health care do you have?

       

    • Tnhurtsme
      Tnhurtsme patyrod

      Posted

      Im feel like hugging you bless your heart i would die if i couldn't taste things that is my greatest enjoyments

    • patyrod
      patyrod Tnhurtsme

      Posted

      Awww, thank you, Tnhurtsme.  That is sweet of you.  I can taste enough to get by.  Some people are worse off.
    • Tnhurtsme
      Tnhurtsme patyrod

      Posted

      Im afraid of surgery for the reason of numbness. Im glad you can still taste. Your welcome hugs are always nice
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