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Urgent help needed!!!!!

Posted , 7 users are following.

cory36651
cory36651

I have been struggling with what seems to be trigeminial neuralgia according to my gp. Although this is the case, I have no aching feeling in my jaw, teeth etc. Instead I get a horrible burning, itching sensation on my face. This causes redness and irritation. I have been on tegretol (100mg) carbamazepine. I started on 1 a day, that didn't work so i moved up to 2 a day, that also didn't work and then finally I am where I'm at now which is 3 a day(300mg). There's no doubt that this medication does relieve some of the irritation. But I can still feel this horrible feeling that seems like it's ruining my facial skin. The thing is, I am 16, just left school and I can't live like any normal person. It affects me everyday to the point where it's making me depressed. I have my whole life ahead of me and it's being set back by trigeminial neuralgia. I need help in what to do, how to stop these sensations urgently. I'm on my last legs, thankyou for your help, god bless.

2 likes, 13 replies

13 Replies

  • valerie17599
    valerie17599 cory36651

    Posted

    Maybe try seeing a neurologist, for second opinion. I sure hope they find away to help you. I wish you the best of luck.
  • mary58667
    mary58667 cory36651

    Posted

    If you can, you should see a neurologist.  They can properly diagnose if it is trigeminal neuralgia.    They can prescribe meds and discuss treatment options.  Hope you get relief soon, good luck.
  • lee12629
    lee12629 cory36651

    Posted

    Hi cory,my friend has tn,your dose is fairly low,for her she takes around 600. You might want to ask about that. also look into the Gamma knife procedure and other procesures,treatment is not all just medicine based,I hope you find some relief,i know it rough. Xx
    • cory36651
      cory36651 lee12629

      Posted

      Thankyou very much I am now on 600mg tegretol tablets. The stabbing and irritating sensation in my face has not gone but it has improved since I was on a lower dosage. I will be sure to look into this gamma knife procedure for definate. Thankyou for replying, god bless you 
  • lee12629
    lee12629 cory36651

    Posted

    Also go to a dermatologist, you may be misdiagnosed.
  • sally90
    sally90 cory36651

    Posted

    You poor thing, I feel so very sorry for you.  Go back to your doctor (preferably with a parent who will just listen what is said and if need stick-up for you).  Demand to see a neurologist.  Join the TN society, look online for their details, however, having suffered for many years it sounds as if it could be something else.  The TN society have many leaflets that explain TN and a number to speak to someone.  With TN you experence feeling there is a live electric wire in your face/mouth as well as tooth ache pain, burning and several other odd pains, the electric one is the worse.

    I do hope this will be solved soon and you will have your life back and you will be able to live it happily.

    God bless you.

    Sally

    • cory36651
      cory36651 sally90

      Posted

      Thankyou for giving up your time to reply i really appreciate it. I am booked to see a neurologist soon so hopefully I can get some answers. Also, I would've just like to say how I don't receive any pain in the teeth, jaw etc. Instead I feel more irritated around the facial skin, it almost feels as though my nerves are so unbalanced. For example-some days I would feel like a hair is on my cheek irritating me but actually there is nothing there. So it must be something to do with my nerves. God bless you sally and I appreciate the time you've given up for me 😜

  • army183
    army183 cory36651

    Posted

    I agree with everyone on here - get seen by a neuro team, you need a clear diagnosis before setting off on a drug fuelled exercise in an attempt to relieve your symptoms.

    Also agree with looking at the uk TN association (just search for TNA UK). Very helpful site.

    Good luck

    Cheers

    Big D

  • marlene36342
    marlene36342 cory36651

    Posted

    Hi Cory - you need to see another gp for a second opinion and also a referral to a pain management dr.  I was diagnosed with TN in 2006 and had MVD surgery in 2009.  The pain and facial redness you are expressing, I had no symptoms of.  My jaw and teeth areas were in a great deal of pain.  You mentioned something about ruining your facial skin.  This is also somethig I did not experience or ever heard of.  Please contact me again as I would like to know how you are getting along.  Blessings.

     

    • cory36651
      cory36651 marlene36342

      Posted

      Thankyou for replying Marlene really appreciate it. At the minute I am waiting to see a neurologist and I have upped my dose on tablets to 600mg a day. It does take some facial irritation away but it's definatly still there. For the comment about my facial skin. Well the thing is there is many different types of TN and i just happen to have the rare one ahah of course😂 But yeah it doesn't affect anywhere but my facial skin. It's sensitive to touch. I wouldn't exactly say it itches but I get a stabbing, irritating sensation in my cheeks either side of my nose.

  • marlene36342
    marlene36342 cory36651

    Posted

    Hi Cory - thank you for your message.  I can't remember if we discussed this before or not but did you have MVD surgery?  Since my surgery my right cheek, lip, jaw and temple areas have different sensations.  Very anxious to know.  best wishes.

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