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Recently Diagnosed with TN after 5 Years of Pain

Posted , 3 users are following.

georgia18769
georgia18769

Hi all, 

Firstly, I am an 18 year old girl and have been experiencing earache-like pain in and around the ear for almost 5 years now, though it's hard to remember how long it's been. At first, doctors thought it was an ear infection so I went through courses of antibiotics throughoutschool that did nothing. The doctors then told me to wait, that it was probably something to do with growing up and that it would go away in due time.

 

A year or so later my parents were still concerned so took me to see another doctor. They referred me to ENT at my local hospital, and all they did was a hearing test and a pressure test and said it looked fine so there was nothing wrong. Bear in mind that I was probably around 14-15 at the time and TN isn't common at that age at all. 

Since the doctor told myself and my parents that it was fine, I stayed away from doctors for a while. The pain tended to come in waves that usually lasted at minimum an hour, and I had long periods of remission which made me think less of it. I did notice though that normal painkillers weren't doing anything at all for the pain. 

My years in college were a lot worse than in school, and the pain was worse and happened a lot more often than before. At the end of my second year of college I couldn't take the pain and the fact that I couldn't control it, so I went to see my doctor again. I was 18 when I did this and was about to go to university (Which is where I am now) so I wanted to know what this was. She referred me to ENT at the hospital where my university is, and the ENT there was a lot better than the one at home. They used a camera up the nose to have a look inside, and also did an MRI to make sure it was nothing serious. The ENT then diagnosed me with TN in January. 

Since then I visited a doctor for treatment who prescribed me with Amitriptyline. So far I've had some side-effects and I am finding it hard to cope. I am feeling depressed, sometimes to the point where I am crying over small things and can't stop myself. I feel like I want to get my doctor to replace my prescription with something else but I have to wait a few weeks to see if the side-effects improve at all. 

I feel like I have no one to talk to who understands what's happening and could really do with some advice. 

Apologies for the wall of text, but I hope someone can help me with this. 

Thank you. 

1 like, 5 replies

5 Replies

  • stevep1965
    stevep1965 georgia18769

    Posted

    Wow I really do feel for you and understand the frustration. I suffered from TN for an unbelievable 14 Years. Then after 13 years they finally found the compression of the artery on the TN. I've had a lot of procedures and meds. Surgeries I had - Gamma Knife - took effect quickly and came back quickly after 6 months. Had alcohol / glycerol injection in to the TN. Took effect slowly and pain came back although gradually. Disappointment was an under statement. They also put me on carbamazepine - pregabalin - amytryptaline - nortryptaline - baclofen etc. Also tried accupressure - acupuncture - an infusion of lidocaine and another of ketamine. The most effective treatment was acupressure although not permanent relief. The only surgical procedure that worked since having it 5 years ago and that was Microvascular decompression. Anything youd like to know just ask. I hope you find a lasting solution soon.
    • georgia18769
      georgia18769 stevep1965

      Posted

      Wow 14 years, that's a long time to go without knowing what the cause is. One thing I've wanted to know is will this ever go away of do I have it for life now? My doctor didn't explain this, all she said was that it is chronic pain.

      Also it must have been annoying to have had to try so many different things so I feel for you also. I'm not good with needles at all so I am dreading anything I may have to have done, the cannula for the MRI scan was enough for me. sad 

    • stevep1965
      stevep1965 georgia18769

      Posted

      You need to do research and find a good TN consultant. I had experience of 2 very different consultants. One was very eager to go down the drug route and others wanted to go straight for surgery. I'm not a doctor so I wouldn't answer the question as to how long it will go on for or exactly whether its TN or not. What I do know is that I read piles of research material about facial pains and never gave up. I knew that there was a real cause for my pain and that it wasn't psychosomatic as they would have me believe. There is still a lot that medics don't know about pain particularly Trigeminal pain. And I'd have a few CTs and MRI scans and apparently veins and arteries compressing the nerve on scans are fairly difficult to spot. They obviously were in my case. Even though the prospect of the that surgery terrified me in the end I was willing to take a punt as I couldn't go on 1/2 living my life as I was. I couldn't do so many things - cleaning teeth, eating, swallowing, breathing, moving, shaving etc. everything would set it off, even walking. Pain was constant dull ache - electric shock - burning and prickling. It affected all 3 branches of the TN right hand side.
  • Valkyrie
    Valkyrie georgia18769

    Posted

    Gee,i haven't heardof Amitriptyline beingused for TN before. Maybe someone else on this discussion board has though.
  • paula76255
    paula76255 georgia18769

    Posted

    Hi Georgia.  There are other medications out there for this condition.  Ive tried Tegretol and now on Pregabalin (epilepsy tablets) and all I can say is when you have the pain take a deep breath and ride it out.  Thats what I do. I know it isnt easy! Tegretol is the favourite medication the doctors prescribe and to begin with I found it brilliant at getting rid of the pain, near enough instantly.  However as Ive said in other replies this morning, please get regular blood tests to make sure they arent doing any harm.  What about acupuncture (your pain management doc should be able to recommend someone?).  Ive read Steves reply and agree to do as much research as possible, I do.  I know there must be a cure and this condition isnt as rare as the doctors say so surely there must be lots of research trials into TN?  I hope you can find another tablet to help you soon.  If I can help you with anything please ask. Paula
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