On Monday, I attended the Migraine Clinic in Beaumont, and I swear that I am getting more and more pissed off with the whole situation.
So it all started when I was called by a very young doctor. He was very pleasant and he took a detailed history of my pain. (I had to tell my fecking story AGAIN, despite a file a couple of inches thick was sitting on his desk.) Anyway he was bamboozled with the sheer amount of medication that I am on, and he went to get a more senior doctor. For the life of me I can't remember her name. There is very little the can do for me, and they agree that I may have a migraine element to my pain, but the root of the problem is Atypical Trigeminal Neuralgia. According to the Migraine doctor, I have two choices; another but different nerve block, and an adjustment to my medication. The latter is tricky, as there is a very real chance that my pain and my emotional state could be compromised, I will more than likely have to be admitted to hospital.
I left the doctors office slightly deflated and a bit angry. I was waiting for this appointment for 18 months, and nothing came out of it. I am going to ring them if the Stereotactic Radiosurgery doesn't work.
So on Tuesday I was back in Beaumont, but I was in the oncology section. Preparations for my procedure were underway, and I will say one thing. It hurt like hell. I had to get bloods taken which doesn't bother me at all. Then I had to wait (for 3 hours) for them to send me for the CT scan. Now getting any of these scans aren't pleasant. I had to get a plastic like mask made and that hurt like hell. I was in so much pain, I can't describe it. My face is painful all the time, the acid burning pain is a constant companion, and the electric shocks and stabbing pains visit regularly. If any one touches me, it causes me unimaginable pain. Pain so extreme that I need to yell out or I collapse.
The mask is made of heated plastic mesh stuff and it had to be moulded to my face, which means the nurses and radiologists had to touch me. They were so nice and understanding, so I couldn't be angry. The pain is still extreme, I can still fell that fecking mask on my face now, and I know that the next couple of days are going to be really bad.
This is the final stage before the procedure and I can't wait to get it all over and done with. I may have a low pain Christmas and that will be a major improvement on last year. A 20% chance of lower pain seems like a small chance, but it's better than nothing.
There have been a lot of success stories, and I will say that the side effects are ridiculously frightening, but the chances of some of these side effects occuring are very small. I refuse to worry about it, until I have a reason to panic.
So I am having the week from hell. It doesn't differ from any other week I guess, but I am becoming weary of it all. Trigeminal Neuralgia is a condition that has altered my life completely, an not in a positive way.
I am also becoming aware of all the things that I can't do any more. I used to always focus on what I can do, and banish all the negativity from my mind. I can't do that now. I couldn't go to the cinema this weekend, I can't go to concerts any more, and it's impossible most days for me to leave my house. The inevitable roars of the dinosaurs and the bright flickering lights have stopped me from going to see Jurassic World. I had to leave the Avengers early a month or so ago, I literally couldn't cope with the sensory overload.
It may seem odd, but loud noises, bright lights (especially strobe lighting) and strong smells, trigger an attack that lasts for days at a time. It's awful, the left side of my face is burning constantly as it is. The burning pain averages at a 8/10 morning, noon and night. Add to that bursts of electric shock and stabbing pain, I often cannot even rate the pain.
I used to feel sorry for myself, and I was entitled too. Now I am angry. I am so angry that this condition is chipping away at my life with a giant chisel. I am on ridiculous amounts of medications and I am still waiting for the team of consultants to help me. They have acknowledged that my case is possibly the most complicated they have ever seen. Saying that, I have their promises that they are doing the best that they can.
I couldn't go to Slane this year and there are awesome concerts coming up that I would love to go to. I know for a fact that I can't go, sometimes the noise and lights in a supermarket are too much for me.
Since when did I become such a delicate human being? It makes me angry and sad at the same time. I am hoping that the Stereotactic Radiosurgery will help me, if not I am willing to try anything else. Well except Acupuncture etc. I wonder if this is normal, do people with chronic pain feel this way? I am battling with increasing insomnia, or painsomnia. It is impossible to sleep whilst in so much pain. It is also a possibility that this is adding to my general bad mood.
Depression is another thing I can thank this monstrous condition for. I am trying to keep a handle on it, and while I am not a fan of "prayer" or some holistic stuff, I do believe in the power of meditation. Actually writing down how I feel is helping. As I write I can feel some of the tension leaving me, and that is the reason for this blog.
