Dr. Kevin Yao's feature on CBS News discussing Trigeminal Neuralgia.

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? 
  

Trigeminal Neuralgia Awareness

Today was a shitty day. I don't apologise for the language as this is my blog, and I need to vent. 

This pain is not getting any easier to deal with. How much pain can the body and mind endure? I have reached my limit and I am hoping every day that either my medications will start to work, or this pain would dull for a while.

If you are wondering in disbelief about the pain I describe, let me paint you a picture. 

Imagine that your face is being burned by acid. How painful would that be? Now imagine that pain ALL the time. Not pretty.

Not only does my face burn constantly, but I am getting hundreds of electric like jolts of pain every day. Imagine being struck by lightening over and over again. Not nice. 

Along with the horrific burning and shocks, I constantly feel like I am being stabbed in the ear with an icepick. 

Now I am not writing this for pity or any such crap. I am pissed off. I have went through almost a year of this, and just when I have reached my pain threshold, it gets worse. 

I also don't believe that Trigeminal Neuralgia is as rare as the documentation wants us to believe. I know that there are people out there that have been misdiagnosed. I was in A&E and there were nurses and a few doctors that never heard of Trigeminal Neuralgia. If my medical file wasn't available and if I hadn't insisted that my consultant was informed, I would have been sent home with a couple of paracetamol and told to rest. 

That is just plain wrong. I have read countless accounts of people being treated in that way, and this crap goes on for years! I know that I am lucky to have a diagnosis so quickly and I have had a serious amount of tests and scans that aren't widely available. 

If you are reading this and you feel that you are not being diagnosed properly, speak out. Nobody knows your body better than you. These doctors are being paid to look after you! It is their job. I know that doctors and consultants can be quite intimidating, but they are being paid a lot of dough to fix us. 

We really and truly need more awareness. The blank looks that you get when you say the words Trigeminal Neuralgia will wear you down. I even had some dumbass say to me that that Trigeminal Neuralgia is a fancy name for a headache. I wanted to rip her throat out, and that is me being nice. 

Now I am not normally an angry person, I am quite calm although I have one hell of a temper. 

We are approaching the International Trigeminal Neuralgia Awareness Day on October 7th. Our teal ribbon is available to download on every search engine and it should be shared around all social media sites. Awareness will lead to understanding, funding, and eventually a cure. 

Trigeminal Neuralgia and other forms of facial pain are life altering conditions. How to deal with these conditions on a daily basis is a challenge and one we must win. 

Scans and Needles

This is day 10 in Beaumont and things are pretty much the same. My pain is still hitting my pain threshold and I honestly feel that I want to die. I have these episodes daily and yesterday in particular was an extremely bad day.

Because this pain involves nerves, my doctors don't think that analgesics work. I have to agree. I have taken all almost every painkiller during my time with trigeminal neuralgia , and all they do is make me feel sick and sleepy.

I am to have a nerve block this morning. It's partly for diagnostic purposes and partly for my sanity. The doctors here believe that I have TN, but they also think something else is going on, which is fuckin' fantastic. This involves needles to the neck. I don't mind needles as such, but not a huge fan of them going into my neck. Hopefully I won't have to get any more scans. I have had two MRI's and I don't want anymore. They aren't painful, it's just a body scan, but the noise and vibrating set off my pain to intolerable levels.

The nurses and doctors here are awesome, well mostly. There is one dickhead in particular that gets on my nerves. I am a grown up, fairly intelligent and I have a healthy dose of common sense. This doctor treats me like a half-wit and that pisses me off. He constantly talks over me, refuses to answer my questions and he has this nasty arrogance about him.Thankfully my consultant is quite nice (although I haven't seen him since last week.) Once I got out of the war zone that is A&E I have been treated really well. It is still evident that staff is stretched to breaking point, but they really do try.

Hospitals must have a serious issue with fruit. I have not been offered a single piece if fruit since I was admitted. The food here isn't that bad, but a little fruit would be nice.

I really hope that this nerve block works!! I am trying to imagine a day where I am pain free. Pain has become such a part of my life that I have forgotten what it is like to be normal. I will be devastated if it doesn't work, but positive thoughts!!