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Trigeminal Neuralgia

Posted , 6 users are following.

misie
misie

I have had excruciating day today, 7 attacks of trigeminal neuralgia, the longest one lasting for 30 minutes. I am taking oxcarbazepine, 900 mg so far. Supposed to work up to 1200 mg. I am having trouble with nausea , is this a side affect that anyone else has experienced? The only other problem is a lot of hesitation when trying to urinate, very uncomfortable feeling, although straining eventually works. My husband is leery of any surgery, but at this point I would think it better than coping with this drug. Anyone have any suggestions for me? I have no life, the oxcarbazepine makes me sleepy 24 hours a day, just like gabapentine did, when I first started this affliction 6 years ago. I was in remission for 5 years, just returned last month with a vengance.

1 like, 9 replies

9 Replies

  • alicot
    alicot misie

    Posted

    Your husband doesn't know the whole situation. The only thing besides drugs IS surgery. Most surgeries are non invasive. Like my radio frequency surgery is a day surgery that is over in a few hours.  I was left with a tiny round bandage, that's all.  My jaw is numb making eating in front of people a challenge. But the pain is gone and you get your life back.  Now there are other such surgeries that have worked for people as well.  The problem is that sometimes a surgery doesn't work.  This problem we have is absolutely insane! no cure, only treatments that work for awhile, work for a long time or don't work at all. 

    Don't wait, get to a neurological surgeon without hesitation and get out of this mess for as long and as quickly as possible. I believe we need to end the suffering, find a good surgeon who knows about TN and  has done many TN surgeries.

    You will find your way through this and success IS possible without drugs but with a chosen surgery ( there are about five different kinds of surgery) whether permanent or temporary.  With the temporary ones, you just do it again unless you decide on the surgery where they cut into your neck. I forgot the name of it. I think that one you can only do once. But do the research and get the help you need.

    I have spoken! Best of luck! You can do this!

    • misie
      misie alicot

      Posted

      Thank you alicot for your advice. I will go back to the neurologist who treated me 5 years ago, ( only one in my area), I am pretty sure he offered to send me to a neurosurgeon, so will follow up with that see what is recommended in my case. I was considering the MVD or the Gamma ray knife, which apparently is totally non invasive. Will check the success rate with both of those procedures. 
  • jeanette54598
    jeanette54598 misie

    Posted

    Hi, I took Tegretol 1200 for Trigeminal Neuralgia, like you I had had a couple of episodes lasting a few months then settled down tried Gabapentin - which did not help. I thought these were severe but my last episode many months after were unbearable. I tried Acupuncture and Botox nothing worked. I was eating Weetabix through a straw because movement of my face set off an arrack. My attacks were across the right hand side of my forehead, quite rare. I eventually had a MRI scan. This showed severe nerve impingement.  I saw a wonderful Neurosurgeon who performed a MVD. I was in hospital four days! This is three years ago.  I came off my tablets two weeks later. I have a scar at the back of my right ear, which has all but disappeared. I can honestly say it was the best thing I have ever done. This has given me my life back. I enjoy my family without any fear of attacks. I appreciate not everyone has such a good result - but it worked for me!
    • misie
      misie jeanette54598

      Posted

      Thank you jeanette, I am glad you have had success with the MVD, it sounds promising for sure, though apparently like you said, everyone is different. Will see if this procedure is recommended for me. I just woke up, no pain and no drugs so far today. I am sure once I start on the pills for today, things will go downhill for nausea and sleepy. It would be good to get off the oxcarbazepine if this is causing so many side effects.The doctors encourage different drug cocktails to try before resorting to surgery, but they are really wearing me down. I will see about consulting a neurosurgeon.  
    • jeanette54598
      jeanette54598 misie

      Posted

      Hope all goes well, I couldn't try any other treatments because it was affecting my optical branch. Do try and get other options there are a few not as invasive as MVD,  Good luck x

  • marlene36342
    marlene36342 misie

    Posted

    Hi Misie - the med you mentioned that you are taking sounds like an anti-seizure med,  I have been on several of these with bad side effects.  I cannot take them anymore.  Are you on a pain med?  I have spoken with 3 people who had MVD surgey and now are living pain-free.  Also, there are many more anti-seizures out there.  This could be the case of getting you on the right med.
  • army183
    army183 misie

    Posted

    Hello misie (and others).

    You can add my name to the list of people who got their life back after MVD surgery. I was on 1600mg of tegretol at the peak of my condition. I reckon that if you have clear arterial compression of the nerve root, then MVD is the way ahead.

    No matter what, you need to discuss carefully with a good neurosurgeon who is also an expert in TN.

    Are you in the U.K.? If so, there is a lot of support and people's experiences reported in the website and forum of the TNA (Trigeminal neuralgia association) - just look them up on a web search. One of their medical directors is a TN specialist and you can get good help with lots of areas e.g. Drugs, several types of surgery, relative risks and success rates etc.

    Good luck

    Cheers

    Big D

    • marlene36342
      marlene36342 army183

      Posted

      Hi Big D - I'm sending you a very big hug.  Congratulations.  I have had the opportunity to speak with 3 people who had TN and are now pain free.  Wishing you the very best with many good days to follow.

  • lenka50873
    lenka50873 misie

    Posted

    I have had trigeminal neuralgia for the past 10 years on and off. Mine comes on with stress. Was on oxcarbazepine for a few years as prescribed by a specialist at a hospital and yes they will make you feel sick for most of the day along with the feeling of fatigue. Also get your doctor to check your blood as this drug drains all b12 from your body. Then they stopped working and now ive been on amitriptyline which worked for the first week and even tho docs have stepped up my dose it still isnt working. Went today and got gabapentin fingers crossed this works for a while. Thinking of mvd when no pills work anymore.
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