Genesis & diagnosis

It’s funny. I haven’t yet been diagnosed with TN. Officially. (More on that later) But here’s how I got where I am. And please be tolerant of the detail in this important post. It’s a sorry milestone in my life, yes; but I also want to record it chapter and verse for anyone who comes here in a similar situation. It’s as detailed an account as I dare to bore you with, of the path I’ve taken with this affliction. Leading to now, late June 2018

 Late 2015-2016: Close Encounters

One morning towards the end of 2015, I walked into the shower, stood under the stream, threw my head back to shampoo  – and I felt this weirdest little twinge of pain in my head. A sharp little painful tug on my scalp – and I really thought something had tangled and tugged at my hair. Except that the tug and the pain – felt like it was coming from the inside. Like something was tugging at a single strand of hair from inside, somewhere behind my right eye.   I know. That is a weird description, but that’s exactly how it felt at that time and the succeeding five to eight occurrences, over a few weeks. A couple of times it happened elsewhere: once on waking, as I sat at the edge of my bed, another time when sitting at my computer.

And that last occurrence told me something: I am at my PC three-quarters of the day. And this only occurred once at my PC?  So it was not a purely random event – the shower situation had some strange significance – but buggered if I could fathom what that was.

And on the 1-10 pain scale, these were 1s or 2s. Nothing more.

But… when you have spent a while (in 2006) as a post-stroke vegetable and various bits of your anatomy frequently regress to that state;  When you wake up most days of your life post-stroke musing on how nice it would be not to wake at all….

Then.. the inside of your head is like Roswell: Carefully monitored for any returning alien life forms, random sensations, things that go bump in the night. And this was starting to worry me no end. My stroke had been a lacunar infarct (Medico-latin for a small little blood vessel in your head getting fucked up) on the right side of what passes as my brain. So.. this was scaring me. And I saw my GP and asked him for a referral to a neurologist. I gave the neuro as much detail as I could about it. And nothing. It did not sound to her like anything she could think of, and it was decided that we shelve it till it recurred. With one of us hoping that it came back for a bit more clarity. I guess.

And it went away.  For two years. A couple of little twinges, same as above, in the intervening period. Not enough to wake my Area 41 sentries, who were either asleep or otherwise occupied.

Thursday 7th June, 2018: I’m Baaaaack!….

That’s a fortnight ago, as I write this. A date that may well end up seared into my life’s memory…

I was dropping off an Uber rider. One of many passengers who’d come down for the Rugby State of Origin Game 1. And I mention this because sports often engenders lively and jovial conversation in my Uber. So I pulled up, glanced to my right at the hotel entrance and swung my head around, smiling and talking to Nick.

And this bolt of pain-lightning blasted through my head,. That same vertical line, behind my right eye. I almost glanced up to see if there was a singed blood spot on my car ceiling. It felt like it had burst out the top of my head. And it obviously showed, because he looked at me quizzically and asked “You okay, mate?”. I mumbled an explanation about a neck twinge and saw him off. Went round the corner and parked, hyper-ventilating. It had scared the beejezus out of me. To say my old twinge of pain was back is like saying a gentle New Orleans breeze had returned….as hurricane Katrina. And, one thing I knew (not so deep down)…

I had a problem. A big big problem.

Of course, like all lightning bolts, it was gone in that proverbial flash. Shaken, I continued driving that night, hoping that it would stay gone. A forlorn hope, because it struck again three times that night, thankfully at lesser intensity – or maybe the first strike had felt the strongest because it had neatly packaged a terrifying new pain level with the equally terrifying announcement that it had just crashed back into my life, high, wide and ugly….

And by the third time, over a couple of hours, at about 2:20 AM on a clear winter night-morning, I admitted defeat and headed home.

I was – unashamedly –  a bit teary, driving home: Two days earlier I had seen my cardiac specialist for my annual consult, and received the news that my blood test results had been terrific: HbA1c at 5.5, cholestrol at 3, everything else at safe levels. And I recalled what I ‘d told him when I walked in, “Manny, I’m always scared to tell you that I’m feeling great, because it seems to attract some unhealthy attention from the Fates..”

Sigh.

Friday, Saturday:

My sleep patterns these days are governed by my Uber driving. I drive at night, usually back home around 3-4AM and so hyped up from the night (especially Thursday/Friday/Saturday, which are crazy busy) that I sleep only an hour and a half later. And my body doesn’t let me wake up easily. This Friday was different. I woke at 5am with someone thrusting a live arc-welding rod up my right nostril. ie. I woke up in pain and in fright.

Into the shower, and if I needed any confirmation, the blaze of pain gave it to me. Now sitting menacingly at a 5-6 on the 10 pain-scale.

And in front of me was a whole gigantic sign outlined in dots that I had not connected. Yet.

I’d Googled pain related to the eye, pain related to the sinuses, et al. And let me assure you, I Google with the best of them. After all, Dr Google, that much-maligned God of Self-Diagnosis had saved my life in 2006. But this one had completely escaped my net (so to speak). I’m wondering if there was some denial at work here, whether I saw it and slipped my gaze sideways. I don’t think so. Anyway, it was becoming clear that a visit to emergency was in order. I had made an appointment with my doctor for early the following week, but the stabs of pain were of an intensity that was worrying. They made my eye tear and my nose run, and every time that happened I expected to see blood on the tissues.

Sunday afternoon at Box Hill emergency: The penny drops

I’d delayed going in from Saturday night. With hospitals, I’m like the Astors were with cruise ships. Go in superbly packed, relaxed and looking forward to what’s ahead. BUT…of course, sometimes the ship can have a a name like… the Titanic?…

Caught an Uber in, left overnight bag packed at home for Haroon (my brother) to bring if I wound up doing an overnighter.

Station break:

I haven’t actually mentioned what I thought was wrong with me.
I’d now had a scary pain that had been with me over three years. Vanishing and materialising at random.
So what the heck could it be? Other than the pain in my head, behind my right eye, there’s been only one other clue:  Saturday morning I’d woken in the dark with electric fire arcing along my right nasal passage. I’d lain in the dark, breathing hard in pain and then realised that the pain surged with every breath. And when, tentatively,  I held my nostril closed, the pain stopped.

My conclusion:
Worst case:  a tumour somewhere in the region behind my eye that had been growing (hence the increase in pain).
Best case? A sinus infection (the breath-pain connection).

 

Having a stroke closes off many avenues in your life. Travel insurance people laugh at you, people avert their gaze from the old drunk when you do the little change-direction-stagger, the blood bank refuses to take your blood (that hurt!) . But in Emergency, when you tell them you’ve had a stroke? Nice. For once, treated like royalty. They fast-track you everywhere.
Box Hill  Hospital, named for the suburb that has become Melbourne’s Asia-East, is a public facility. So okay, you know what public hospitals are like the world over, right?    Impersonal, unfriendly, not especially clean, treat you like sub-economy class passengers?
Uh-huh. Nope. Remember, this is Australia. And there are times when you revel in that fact. Feel like kissin’ the ground.
Sparkling clean, bright and cheerful decor, well signposted. Peopled by Aussie-informal, friendly staff – young and old. It was so good. I could live there (and probably will, in a couple of years ;)

So. Let’s fast-track with some bullet points:

• On the way into Emergency, I realise the pain has gone away. Completely. Which is the nature of this beast, but puts me into the zone of Furtridge’s Law. He’s Murphy’s cousin. His Law is the one that states that your car will start up and purr along perfectly in the presence of a mechanic, no sign of the death rattle that’s been present all month. Or that your PC will boot up perfectly at the service shop. No Blue Screens of Death.
  So there I was in the waiting room, poking at my face, and around my eye, trying to waken the pain so I could show them.  With no success. (Note this, for later)
• Wait in a small examination room. Lovely young Indian intern, Shaan, comes by, she does basic tests (always including stroke protocol). Says doctor will see me in a while
• Long(ish) wait. Young Chinese doctor. Personable, competent, great bedside manner.  Examines me, takes a detailed account of symptoms. Takes the papers I’ve brought in, my reports from GP and neuro on the 2015 episode. Says I will be CT scanned, but he’ll first discuss with the medical team. Goes away.
• Long wait. Shaan comes back, puts canula in my vein ready for the CT
• Longer wait. But then…
• Two young doctors. Thirties? Paul starts talking to me, again runs through symptoms, examines me (briefly, this time). I tell him that I’m thinking I should discharge myself because I have NO symptoms, and come back in the night when the pain is bound to return. He smiles and says, “May I?”.. and gently probes above my eye. And the world lights up like The Bomb just dropped outside the door. I gasp and say “Jeez. doc. Never been so relieved to be in agony.”
  He says he’ll be back in a minute, comes back and asks me “You okay looking at a skull?” Shows me a model skull upper half. Points to a small channel in the eye socket bone, just above the eye. Says” “That’s where your pain is. There’s a nerve that runs through there. Which is causing you the pain”.
• Adds that they will not bother with the scan. He said it won’t tell us much about the problem. Goes on to spell out a worrying scenario> Essentially, there is not much known about the cause, there is no clear treatment. Outlines some surgical procedures and mentions anti-convulsant medication. They will discharge me, and send me back to my GP to organise a neuro appointment.
• Paul discusses the connection I’m finding with my sinuses and says that they can give me something for that – but he does not think I will get much relief there.
• Overall, as bleak as the sketchy outline is, I love his honesty – and it is a gigantic relief to know that my mystery pain is finally coalescing into something…anything…

But… they still have not mentioned the you-know-what nerve. I still have a bunch of clearly defined dots. I still have not connected them.

That finally happened when Haroon came to take me home. (He has a knack of turning up to ride shotgun every time in my life I board that black carriage drawn by those six black horses….)

Paul’s gone, shift over. Anthony, the other doctor, gets together my discharge papers.
I say to him, “Doc, I’d like to do some reading on this. What exactly is that nerve thing called?”

“The Trigeminal nerve”

And the world goes into a moment of slow motion, to the sound of pennies dropping, poker machines hitting the jackpot, and – deafening now – there’s that gnashing of teeth and wailing…. as my dots finally get connected. And the connected lines read (and please pardon my French, this is kinda emotional):

“THE TRIGEMINAL NERVE, RASHAD. AND WE ARE SORRY TO INFORM YOU: YOU ARE NOW OFFICIALLY IN A FUCKING HEAP OF TROUBLE!”

You see, I know this wretched affliction.
At Vision Australia where I volunteer, there is this wonderfully sweet lady, Sineke. And over a couple of years I have seen the agony she has gone through – and the hoops she has had to jump through to get some facsimile of relief… I know about Trigeminal Neuralgia. But obviously not enough to realise that I’d drawn one of the short straws on this beast.
So much for 1 in a 1000. Ha ha. Unique me.

And so home. Numb.

To wrap this post up, a couple of things:

Thing 1:

At this point. I have not been officially diagnosed with TN. I have an appointment with a (very good) neurologist Dr Hilary Hunt. In August. My discharge summary from Box Hill Emergency makes no mention even of the trigeminal nerve. It refers to facial pain that I “presented with”.
I believe that as TN is a symptom-diagnosed condition, medical practitioners are loath to commit to a diagnosis on paper. It’s not evasion, it makes sense for them to advance with caution. And there are variants of it. Mostly leading to it anyway, but still… there is a possibility that my path to it may be longer, may be a diversion, may be something other than TN.

Time to dust off one of the core Rashad aphorisms:

“Hope for the best, plan for the worst”

I dunno who said that (or a variant) first. But it’s worked for me in recent times.

Thing 2:

Every symptom I’ve experienced ticks off a line on the checklist of TN indicators:
– The remission between 2015 and 2018.
– The increase in pain level.
– The difficulty of waking it up when it has gone into hiding.
– The triggers: The shower, talking, laughing, etc
– And hallelujah: The awful pain, like a steel cord whipped across my face, hard and fast, at random times.

Reminds me of that joke: “Money can’t buy happiness, yes.   But…it can buy a facsimile of happiness that is so close to the original that one can’t really tell the difference.”
See what I’m saying?