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Trigeminal Neuralgia: I am at breaking point

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kayleigh51304
kayleigh51304

I haven't officially been diagnosed with TN but I am so certain that is what I have. I experience electrical shocks of pains down the right hand side of my face in my temple, my ear, my cheek, my jaw and my teeth. I've experienced it for over a year and the attacks are getting more frequent and more severe. It was so bad a few days ago that I went to A&E because I was that desperate for pain relief. My doctors are a little more than useless. They initially diagnosed me with sinusitis and when I said that I didn't think that was it they were extremely dismissive and gave me NSAIDS. I took the NSAIDs as I was desperate for anything to relieve the pain. Nothing does, the NSAIDs didn't and I was told to take paracetamol, then prescribed zapain, then cocodamol, absolutely nothing has even scratched the surface of these horrific attacks in my face.

My doctor said he would refer me to a neurologist over 2 months ago, I am still waiting for a letter to even make an initial appointment. When I was in A&E they said that there was no referral in my records. Regardless of my chasing it up 3 times and being reassured that it had been sent off.

The hospital gave me liquid morphine (I can't remember what it was called, the pain was so bad I was in and out of consciousness) which also did nothing. 

I've been suffering with this for over a year, and I am at breaking point. Literally to the point where I just want to take a load of cocodamol and end it all for some relief. The thought of hurting my partner and my family stop me but I don't know how long I can go on like this without doing some drastic call for help. I realise this is sounding pathetic but I have no idea what to do. Everyone just keeps saying wait for the referral letter, wait for the letter but they have no idea what it's like when sometimes I can't even eat drink or swallow due to the pain. 

Is there anything I can do to get a diagnosis from my GP so he might actually prescribe me some useful meds? 

Thank you for any help. 

 

0 likes, 2 replies

2 Replies

  • marlene36342
    marlene36342 kayleigh51304

    Posted

    Hi Kayleigh - the first thing - please - you do not sound pathetic.  I understand all your electrical shocks because I went through these horrific experiences. Ask your doctor to do up a referral for you to have an MRI. There are two different kinds. An MRi without contrast or MRI with contrast.  Ask for an MRI with contrast.  This will show any blood vessel complications or any compressions going on.  If your doctor cannot do this, get a referral to a Neurologist and he can submit your referral to the hospital.  My MRI was done without contrast but I suffered so much with pain and shocks I did have the MVD surgery.  My MRI was negative but during the surgery, the surgeon found 3 different problem area.  Since the surgery, all the electric shocks are done.  If you have any questions, I would be pleased to try and help.  Best wishes.
  • marlene36342
    marlene36342 kayleigh51304

    Posted

    I also want to mention that I am on daily pain meds.  Because of the electrical shocks you are having, in my opinion you do have TN - just my thought.  When I told my neurosurgeon about the shocks he new immediately that it was and still is TN.
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