Friday, 27 June 2014

Trigeminal Neuralgia Vision Issues!!

For the last few weeks I have had major eye problems. One of the reasons I went to hospital was because I lost the vision in my left eye during a very bad attack When I say very bad, I mean that it was a 10/10. I was so scared, so scared that I was going blind! After some time in A&E and after I was admitted into hospital, I was sent to see an eye specialist there. The vision returned, but it is extremely blurry and I have permanent black spot there. 

There is nothing wrong with my eyes, but according to the Neurologist, the nerves at the back of my eye are under pressure due to the Trigeminal Neuralgia pain. So my Neuro was confident that once my pain was "managed" my eye vision would return to normal. So three weeks later, my vision is still blurry. Not only that, my pain is in the extreme and I cannot understand how I am staying sane. The meds are not working so far, and I am beginning to lose faith in my Neuro doctors. They all keep saying that I have to wait for the medication to start working, well it's been weeks and despite increasing the dosages, there is no change on the pain.

I am trying to remain optimistic, and keeping busy but it's not working so well any more. I am really worried about my vision. Living with this constant hellish pain is bad enough, but having problems with my sight is going to tip me over the edge. I have been on to my consultants and apparently their secretaries are doing their best to get me seen ASAP.

I am curious to find out how many people with Trigeminal Neuralgia, or in my case Atypical Trigeminal Neuralgia have this problem? I have tried looking it up, and rather than reading the medical side of it, people's own experiences would be informative and reassuring. 

I have also been told that I would be seeing a specialist regarding migraines and cluster headaches, but yep, still waiting. Maybe that is the source of my vision problems? 


  1. My eye doctor sent me to a specialist because she thought I had glaucoma because my optical nerves were too big and I see halos at night. Tests have been negative for the past three years, thank God. However, he told me that my TN had nothing to do with the size of my optical nerves, now I read this. Hmm...

    1. Indian River TN Warrior
      I guess everyone is different and it ll depends on scans etc. I freaked out when my vision went at first, but I was assured that my eyeball is okay, and it's all down to nerves. It makes sense in a way. I grilled my doctors and they told me that the trigeminal nerve branches out and one of those branches is in the optical region. (I already knew that thanks to Google). It might be worth mentioning..

  2. I have double vision in my right eye because although I have TN bilaterally it seems to affect my left side mainly and I have TMJ from the UK.

    1. Elizabeth, does the double vision ever go away?

  3. Hi Sara,

    When my TN goes 10 I also loose sight of my left eye. The worst case was around half an hour then it strted coming back again. In the beginning I would freak out but not any more. I know it s TN and it will go away. sometimes it takes alon time till you see good again but eventually it happenns. I've learned to accept it as partof the desease. First time it happened to me I was DRIVING!!!! You an imagine how I felt it! it was a few seconds till my brain realised you still have your righ EYE!!!! Now I just keep on going with m life. I have ATN, TN1 and ON. Bilateral for all 3. Sometimes my right eye goes blurr too but it usual means my left one is working as pain is bigger in one of the sides at a time.
    if there is somethin you wsh to ask I'm Rosário van den Berg in FB :-)
    Hold on girl, life has still a lot to offer!
    Big hug

  4. I am having TN pain and tingling with blurryness as well. I dont think mine is as severe but your not alone.