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. Hi Sarah, came across your blog and am curious to know what was the cause of eye vision? And how was it corrected? I am having blur vision too and also am diagnose with nerve irritation in Trigeminal or occipital neve

  2. I have been diagnosed with Trigeminal Neuralgia, I visited an eye specialist 3 times, then a ear,nose and throat specialist, then a Neurologist. I had an MRI and it was fine. I have pain on my right side and then pain started on my left side. Thy told me it was migraines but according to the internet it can occur on both sides of your face. Now I feel numbness on the left side. My right eye does not focus on distance and is blurry. Save your money and head for a Neurologist. My Neurologist can relieve the pain by injections of medication or pain killers above the eye and around your face to relieve the eye pain. It was amazing. He can also prescribe pills to relieve the pain.

  3. The pills Carbamazephine and a cheaper generic Epitol 200 mg will help.I have had two episodes once when I was in college and now. It has been 4 months and my eye is still blurry. The shots did not relieve the pain at the back of my eye, but took away most of the pain on the right side of my face. It has been 4 months. I temporarily stopped the Epitol for a few days but it made the pain come back to my eye, so I will start taking it again. I hope this will help you.