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Diagnosis at last

Posted , 4 users are following.

pamela40465
pamela40465

i have now been diagnosed by 2 GP's after suffering on and off with TN for 4 years with the blame being dental and havinga tooth removed.  In the last 4 weeks the pain has been consistent, a short treatment of steroids helped whilst I was on holiday, now been  prescribed carbamazepine but told this will take a long time to work and have to wait for referral to neurologist. Can anyone suggest how I can reduce the pain, I am beside myself tried co codomol and ibuprofen, not touched it. Help I am desperate lack of sleep is getting me down.

0 likes, 9 replies

9 Replies

  • Glor888
    Glor888 pamela40465

    Posted

    Hi Pamela

    Sorry to hear of your pain.

    I had the same problem at first when I was diagnosed with TN over 20yrs ago. My Gp wasn't convinced it was TN and my dentist wasn't convinced it was tooth related. It was only after I saw specialists that they confirmed it was TN.

    I too was prescribed with Tegretol (Carbamazapine). My dosage was low at first then increased to 1200mg a day. When I had really bad bouts even after taking 1200mg my GP reduced my dosage of Tegretol and gave me a low dosage of Amitryptiline to take at night and that did the trick.

    How much did your GP prescribe you? It may be you need an increase. If not reduce your daily Tegretol and request a small dosage of Amitriptyline, you may find that will work for you.

    Let us know how you get on. Good luck.

    It's all trial and error. For me this time around Tegretol didn't work for me so my Dr has put me on Phenytoin, when that didn't work he has now given me Amitriptyline on top, I've to wait and see how this will turn out.

    • pamela40465
      pamela40465 Glor888

      Posted

      Thank you nice to know I am not alone - only on 200mg a day at the moment seeing GP in a weeks time but given no advice on increasing dosage at all, got a fortnights worth of tablets. The more informed I am I can speak to GP - hope it is not something sinister. Thank you again
  • christina96841
    christina96841 pamela40465

    Posted

    I have a similar story, but shorter!  6 weeks ago I started with ear ache.  I had three weeks worth of antibiotics which didn't touch it.  I then got numbeness in my right side of my face (it was the right ear playing up).  After a week of face pain, I went to see my GP who sent me to the hospital.  I ended up staying in as they weren't happy about the face.  I was put on IV steroids, and antibiotics over night, and then sent for a hearing test which was fine!  By the time I got up to the ward I had a possible diagnosis of TN and was given carbamazepine 2 x 100mg per day.  I have come home with 8 tabs of paracetomol and codeien plis carbamazepine.  Feel dreadful.  Had an MRI on Sunday (3 days from discharge) and then saw the GP on Monday who said they were querieng acoustic neuroma, which is a benign tumour.  Am waiting for results of the MRI and the appointment with the neurologist.  Within 10 days I have gone up to 600mg of carbamazepine.

    Good luck!

    • pamela40465
      pamela40465 christina96841

      Posted

      thank you - I have not been given any advice about increasing the dosage just to return to GP in a week and not to not take it. I hope things progress for you.
  • eddie13
    eddie13 pamela40465

    Posted

    Hi Pamel40465,

    Been there done that on the misunderstood as dental problem resulting in a rootcanal+cap then extraction that didn't help, and then the long wait for the neurologist. Carbamezapine has done the job for me for 6 years. Initially I had to go to the emergency room to get the pills. I got immediate relief on a low dose. Over time I've had to increase the dose.

    My neurologist put me through many many tests to find the root cause. After leasons found in MRI on the brain, he diagnosed MS. I couldn't believe it because I had no coordination problems at the time. But now I do. Walking and balance going down hill, but for the most part, TN lightning bolts are gone. When I get the occassional, I can take another pill and put it to rest in a short time.

    Eddie13

    • pamela40465
      pamela40465 eddie13

      Posted

      thank you so much, it seems misdiagnosis or no diagnosis common. Glad there is light at the end of the tunnel with the medication, concerned that it may be something else. Thanks again and take care
  • colin69485
    colin69485 pamela40465

    Posted

    Hi Pamela

    It sounds as if you haven't been getting the best support, from what you've said. Might it be worthwhile paying for a one-off session with neurologist as soon as possible? This would at least narrow things down and get you on the appropriate medication. Co-codomol and ibuprofen aren't likely to help you. Get the best specialist advice you can ASAP. Good luck!

    • pamela40465
      pamela40465 colin69485

      Posted

      Thank you I am going to call the local bupa hospital and see if I can speed things up by paying. I am desperate thought once I knew what it was I would be in a better place but seems it is just the start. Thanks for the advice.
  • colin69485
    colin69485 pamela40465

    Posted

    Hi Pamela

    As I'm sure you know, you will need to get a referral from one of your GPs, in order to see the neurologist, but this is standard procedure. They never refuse, if you're paying, has been my experience! Good luck - set things in motion now! Colin

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