Trigeminal Neuralgia.......

I will never write a blog post when I am in a hurry, I have learned that in order to do justice to that post, I need to do justice to myself and give myself proper time to really reach deep and figure out what I am really feeling before I can begin to put it into words. So many things have happened since I last posted, and each time I've wanted to write about them, but I couldn't, and as the things that I needed to write about started to add up I began to get a feeling of being overwhelmed by it all and didn't really know where or how to start, until I got to a point of having things build up so much that 'wanting' to write about stuff - became 'needing' to write about stuff....... so here goes.....


I mentioned in my last post that I'd been left with three dry sockets after having my wisdom teeth surgically removed... well, that was just the beginning. As the dry sockets started to heal, I began to notice that I was experiencing an electric-shock-type feeling any time I would eat or drink, or if cold air got into my mouth. The shocks began with running along my tongue, jaw and lips. I contacted the surgeon who had done the operation and he wanted to see me immediately. That was pretty much a waste of time because he tried to tell me that it was unconnected to the removal of my wisdom teeth and it 'will probably settle down'. Meanwhile, the shocks began to get worse and began running from my lower jawbone up into my eye and behind my ear. They also started coming in attacks which could last for twenty minutes or more, the pain is excruciating when it happens, and it leaves behind a dull ache that can last for the rest of the day. Some days I was having up to 14 of these attacks, fortunately they do seem to be getting less frequent and a good day for me now is to have five attacks or less. On further investigation and consultation with specialists, it is thought that the trigeminal nerve was damaged during the operation and has left me with what we hope is temporary Trigeminal Neuralgia. They were trying different medications and different doses and combinations of medications, but I was finding that I wasn't able to function while taking these medications. I felt like I was in a 'fog' all the time and even the simplest of things were becoming a chore to me. It was my own decision to stop taking daily doses of medications, and one that I don't regret. Yes, If I'm having a bad day of attacks or if any one attack seems worse than usual, I do try and combat that with medication, but I generally don't find that it works very well and the after-effects of the medication are much more long lasting than the after-effects of an attack. I've never been a fan of taking medication, I've just always felt that there has to be another way. Currently, my method of trying to deal with these attacks is heat. If I can get a heat pack near my face (not on my face coz anything touching my face will trigger another attack) during an attack that seems to be soothing and helps me to cope with the pain. Also, I find that drinking tea helps, I guess it's because it's hot as well, but the only thing about this is that I can only drink tea once the attack starts to ease off, and I can only drink it from a takeaway-style cup with a lid that has a lip on it. Tea really helps with the dull ache that is the aftermath of such an attack. The left side of my face tends to contract and become stiff and tense during an attack, I find it difficult to speak or move my tongue or lips. My left eye will almost close and my whole face contorts. I have been told that I resemble someone experiencing a stroke, during an attack. Everything that happens during an attack is very involuntary, I have very little control at all. I find it best to just close my eyes and go into my own little world and just let it happen. I know it will pass... eventually. 

If anybody googles 'Trigeminal Neuralgia', you will see that it is known as the 'suicide disease', that is simply because the pain is so deeply excruciating and unrelenting that you don't know how you can continue to go on like this. I've had a few occurrences where I've ended up in an absolute ball of tears (which makes the shocks worse btw), crying to Patrick that I just cannot do this anymore. I then started to do some proper research about Trigeminal Neuralgia, and found that aside from being unlucky enough to end up with this complication.... I am actually pretty lucky that it is not worse. I read stories about people who've had this for 20 years or more, who've been brushed off by Doctor after Doctor, who've been accused of making it up or looking for attention, or worse..... looking for strong medications. People who have spouses and families who don't even try to understand, they are accused of being lazy and anti-social... and so..... I am very lucky. I made the decision there and then that this was not going to control me, this was not going to stop me from living. 
You see.... I have a husband who knows me so well that he can tell when I'm about to have an attack. He notices twitches in my face that I think I have learned to ignore. He knows that if it doesn't pass in a minute or two that I need a heat pack, and while he's heating that up... he's switching the kettle on to make me tea. I have a husband that knows when I'm losing a battle with an attack and will go and get the medication that I need and make me take it. I have friends who have actually gone and researched this disorder of their own accord, friends who I am so close with that I consider family.... they witnessed an awful attack last weekend, it was horrendous and afterwards I was feeling embarrassed that maybe I had made everyone feel uncomfortable, but in fact, their biggest concern was that there was nothing they could do to help me. It was hurting them to witness the pain I was in and they felt so helpless. 
I had to make a conscious decision to realise that yes, this is awful, but I am very lucky to be surrounded by the people I am surrounded by. 

There are people who go through this for many years and have to cope with feeling 'alone' on top of the pain and debilitation. 

Life has thrown many curve balls at Patrick and I, but for as long as we both inhabit this earth..... neither of us will ever feel 'alone'. 

(I started this post feeling miserable and overwhelmed and needing to write.... and I've managed to write myself into a better mood..... I really should do this more often..!!!)

.xx.