It’s a month since a searing series of spikes announced that my life had just careened round a corner into Painland, initiating my my visit to Emergency and my learning that I’m probably headed towards TN. And I say “probably headed towards” because my neurology appointment is still a month away. And a definite diagnosis? Who knows?
Current pain triggers: Rinsing my mouth, talking, and any similar sudden facial movements (coughing, sneezing, yawning, etc). Inevitably, I’ve reigned in my life to control the pain – so I have had fewer spikes. At the expense of human interaction.
A couple of freezing weeks in Melbourne with night-time lows around 3 told me that I can add icy-blasts of wind to my triggers list.
Pain levels/type: Most spikes through the day are between 3-5, when I am alone. and not interacting with others. Evening spike levels inevitably start to rise, and at peak feel like 4-7s, especially when I’m working through the night. I have learned that I cope better when the pain is constant rather than staying braced for the next series of spikes. Which works for me. I consciously now interact animatedly with my Uber passengers, forcing the pain and then holding it there for the next few hours. Sounds odd… bizarre?…, maybe, but much better than bolts from the sky…
The most frequent way my pain manifests currently is as what feels like a fine steel wire pushed up through my right nasal sinus cavity and pushed out through the top of my skull. Oh…and connected to a power outlet.. randomly.
Day: Waking up in pain has become the norm. It has to do with sleeping in a prone position. An experience mirrored in just about every TN blog I’ve read. I’m looking at getting a high-backed recliner chair to sleep in at night. The pain I wake up with is not the stabbing pain but is a painful throbbing in my head like a medium to high grade migraine. It feels clearly related to the attacks I get through sleeping on my right side. If I slow my movements and behaviour, it does wear off by mid-morning and I return to normalcy. As long as I can avoid inadvertently triggering off an attack.
The middle of the day is relatively spike-free, as long as I keep myself in check. The evenings are a gradual ramping up of spikes and pain. Of course. that has to do with the fact that I start driving in the evening and then have to be – and act like – a normal human being. Which in turn means that at the end of my normal working day ( around 2-3am) I walk into the house with my head ablaze with pain.
Night: Sigh. In a nutshell, nights are a descent into the Inferno. It’s got to where I am avoiding getting into bed, avoiding sleeping. And that’s not doing much for my fatigue levels (more below). The football World Cup is on, a perfect way to get out of sleeping.
And when I finally do get to sleep? That’s when things go bad. I’ve been having nightmares, ranging from spiders crawling out of my body to my classic stress dreams of all my lifetime: sitting for an exam that I know nothing about or have run out of time, etc.
And then I’ve found myself having dreams of being back on the smokes. Oddly, that has been the scariest, because it’s almost like my mind starting to give up on me and say…”Ahh, hell. you might as well… what difference is that going to make now?..”
So I’ve been waking up many times a night. In pain, mostly. In fear (from a nightmare), often. Thankfully not so much in loneliness – don’t ever underestimate the comfort of a dog nestled up against your back who wakes with you and gently nuzzles your ear to say, “It’s okay, I’m here”.
Fatigue: This one’s bad. Fortunately I quickly learned to compensate with some power naps during the day.
I didn’t see this coming. I thought pain would be the main – and only – enemy. Well, I got one out of two… Here’s an excerpt from a blog, The Pain Corner. It’s 1# on my list of links to blogs by TN sufferers. I list and write a bit more about these blogs on my Blogs and Resources page. Visit at least the first few. I am humbled by the good cheer, calmness and equanimity with which people like Kirsten (of The Pain Corner) are going about their lives and have been doing so for years.
… Oh my God, the fatigue.
I would like to think, after two and a half years of trigeminal neuralgia, that I would know what to expect. I think I’m an expert at getting it the fuck done, chronic face pain and all.
I’m aware that being in constant pain is very draining and I’m used to being exhausted all the time, but this is a wave of fatigue like never before.
I’ve always tried to avoid the word fatigue as I don’t have chronic fatigue syndrome (otherwise known as M.E), I have chronic fatigue – just chronic fatigue on its own – chronic tiredness, chronic exhaustion and just plain old chronic drowsiness. I don’t want mine to ever be confused with M.E. I just have TN and my body can’t keep up.
Initially, I thought the fatigue was just from my lack of sound sleep. However, over the past few days I’ve been thinking a bit more about it. I’ll pen those in another post.
Depression: The third of the triumvirate that’s characterised my past month: Pain, Fatigue and a swampload of drag-me-down, industrial-strength, old-fashioned Depression. Capital D.
I’ll not go on about it here, it’s worthy of a post unto itself because it is a formidable foe, tearing at the flesh of my Life.
Ha ha. And I’m just setting out on this road? Gee whiz, Batman. We are in deep doodoo…
A much later edit:
Funny, I left out one of the most important downers of the past month, and possibly one with the potential to wreak the most havoc on me..
Weight: In the past month I have put on about 4 kilograms (9-ish pounds). That is a freaking disaster!!! Of course, when I have the perfect storm of sleeplessness, pain, depression, anxiety and loneliness in my life, what do I do, idiot that I am? I eat. (Oh, and the World Cup helped it along – but at least, that ends this Sunday) .
I think I did not mention this earlier because my mind is trying to ignore that it’s happened. I need to put it top of the agenda, because unlike others who can put on weight and sail along unaffected – other than with a bit of self-image angst, I am different. For me Weight gain = Higher blood pressure -> Higher potential to re-stroke + higher cardiac risk.
So when I saw how my weight was barrelling upwards, I started to wonder if there was something else at play here. Whether deep down I’m starting to seriously doubt whether I want to stay on the train. That is scary thinking. So OK, this gets recorded here on my notice board, high and clear. I need to address it by my next update in August.