Tag: Trigeminal Neuralgia

Where is my left cheek?!

Trigeminal neuralgia feels like a vicious affair, and it is still hard to know who came first, TN or MS. Being a lover of Shakespearean drama, they would tell you they arrived around the same time.

Between you and me, do you often feel like a medical enigma? Or like a thespian in a strange, perilous play, even?

Notice the face?

For obvious reasons, I haven’t shared this picture since it was taken at the end of 2006.

“So, why share it now,” I hear you ask. That is a very valid question. You see, my mind is stuck in a rut, the kind of rut that takes you to Dr Google who will tell you that you will be dead by the end of the week even if the only medical thing you do is sneeze once or twice a year.

Dr Mozilla is as inept as a neurologist, as he might inform me I will make the end of the year if I stay offline for at least four weeks. Considering that today is December 3rd, he does have a point, but not one I care to examine any further. Read More

The truth about Cinderella

Some days I  go through life like a half-baked version of Cinderella. There’s promise at 8 AM, but by 11 AM my fairytale book is closed until further notice.

In the background, that all-important clock keeps ticking forward, but my body is in a rut: sleeping, eating, exercising, resting, more eating, more sleeping and back again.

And that Cinderella shoe?

Taken by someone else altogether.

Very much like the 11 AM dip in your energy levels, mine resemble a psychologically broken record: I keep finding out I am 100% present, but physically I’m not all there. Read More

The five-second MS rant

Oh please, stop wanting to be sick! If you – as a healthy subject – feel dizzy when standing up, feel stiff or just tired, try making common sense of what your body is telling you. You stood up too fast, you should exercise more, and you should perhaps sleep a tad more also. Your body told you it’s one big piece of machinery that regulates itself as we speak and is using common sense to get you back to your usual, fit and healthy self.

“Oh no, what does that mean?!”

“Give me a break, please. Stop being so self-aware of every little nook and cranny in your body. Stop assigning it symptoms that are self-diagnosed. Stop wanting to be sick.”

“You want to feel pain? How about I lend you some trigeminal neuralgia laced with extra brain fog and energy levels that reach -50 at least.”

Yes.

This is a five-second rant. Read More

MS Anxiety

Research shows that MS-related anxiety usually happens shortly after being diagnosed, while some doubt it does not result from the physical process of MS itself.

Not so fast, buster!

I begged to differ.

image anxietyJust this morning I was described as an annoyingly independent and stubborn oddball.

I can live with that; I presume more people would agree.

What they do not know, however, is that for the better part of 13 months, I chose to hide a painful side of my emotional and mental frame of mind. In fact, I simply refused to give meaning to it.

MS-induced anxiety.

Hints were dropped here and there, but I never told anyone about the fear that gripped my throat every time excruciating, knifelike facial pain (trigeminal neuralgia) took hold.

When TN attacks, the area around my left eye and the inside of my left ear as well as the inside of my eye become target practice for lightning bolts looking for a different kind of light show. Or, the stabbing pain turns into rubbery, burning numbness.

Neither are favourable.

Every 5 seconds piercing pain would turn my lively chatter into silence, and fear would grow stronger as time went on because people began to notice my absence because I needed a quick withdrawal from the outside world.

Anxiety grew to the point where I would only go outdoors wearing earplugs and sunglasses, and when I had a few Kalms tablets under my skin. Also, as a psychological issue, the stigma surrounding mental health made it difficult for me to speak up. In addition, I was also clueless about the fact that MS and anxiety are linked, making it a mental health issue about a chronic, physical illness.

I was more than surprised, so, when I read that research showed that MS-related anxiety usually happens shortly after being diagnosed, while some doubt it does not result from the physical process of MS itself. Read More

Trigeminal Neuralgia Awareness Symposium, Dublin

xzsf_vs1504October has finally arrived, which means that the 4th International Trigeminal Neuralgia Awareness Day is almost upon us. On October 7th the Light Up Teal campaign will see buildings across the world light up in a teal hue, with many buildings in Ireland joining the awareness campaign.

So far, confirmation of 34 structures has been received, including the 3 Arena, Convention Center, Mansion House, Cork City Council, National Concert Hall, Christ Church Cathedral, Shannon Airport, NUI Maynooth and Galway Cathedral. Elsewhere, Niagara Falls, the Canada Peace Bridge, Perth Concert Hall, the Trafalgar Sq Fountains, Taipei Tower and The Sichuan Tower to name just a few, will don the same colour also. Read More

Mental or physical, your choice

“Is life with MS that comfortable, then? God, no. Absolutely not. You just have to learn how to live with it. Somehow I found a way to tap goodness from those negative connotations because I listened to its actual narrative by refusing to make a mountain out of a molehill. So, even when facial pain is also called “the suicide disease”, even when MS fatigue can knock me senseless in less than five minutes, and even when I feel awful inside despite not looking sick, I am just cool with the whole lot because there simply is no other way.”

10906095_10152968660468908_3270331244306118983_nAfter the fun-filled celebration of having to scroll further down age-selection forms on the internet yet again, I felt rather bemused at how fast life was whizzing through highs, lows and the “despite this/that…” moments.

So, once the usual questions “How’s the facial pain going?” as well as “Willeke, why do you never smile at the camera?!”, I wanted to give as much information in one sentence as possible. Sometimes it’s good to be low on energy as it automatically stops you from talking about “that” subject for the rest of the day.

“That” → MS. Facial pain. Or pain, period. Read More

TN triggers, symptoms, examination & diagnosis

“Other disorders that cause facial pain should be ruled out before trigeminal neuralgia is diagnosed. Some disorders that cause facial pain include postherpetic neuralgia (nerve pain following an outbreak of shingles), cluster headaches, and temporomandibular joint disorder (TMJ, which causes pain and dysfunction in the jaw joint and muscles that control jaw movement). Most people with TN eventually will undergo a magnetic resonance imaging (MRI) scan to rule out a tumour or multiple sclerosis as the cause of their pain.”

Trigeminal imageBackground

A number of causes can be attributed to facial pain, which makes a trigeminal neuralgia diagnosis an often challenging experience. Patient distress, as well as the clinical overlap with general dentistry, can lead to different kind of outcomes before the diagnosis is made. Because of this, close attention needs to be paid to avoid misdiagnosis, especially as one of the symptoms of a neurodegenerative illness.

In those without MS, compression of the trigeminal nerve is a common cause of TN. It is believed to be the pressing of a blood vessel on the trigeminal nerve as it leaves the brainstem, causing the wearing away of the protective coating around the myelin sheath around the nerve. When the nerve fibres short-circuit, electric shock-like pain happens.

People with MS are 20 times more likely to develop TN, of which approx. 20% can experience it on both sides of the face (although rarely at the same time). Compression is unlikely to be the reason in those living with MS, where the cause most likely is a demyelinating scar or plaque.

More rarely, symptoms of TN may be caused by nerve compression from a tumour. Injury to the trigeminal nerve (perhaps the result of sinus surgery, oral surgery, stroke, or facial trauma) may also produce neuropathic facial pain. Read More

Ignorance

Oh, people will stalk you on Facebook on their smartphone, but do not ask them to find unprejudiced, trustworthy websites to learn something about your condition on that very smartphone. Quite often, they “will do so when they have time,” despite having their phone in their hands 50 times a day.

If people would at least show some respect, many people with chronic or terminal illnesses would live easier lives. After all, knowledge is power.

Being Real image

I could call this a ‘letter to society’s ignorance’.

I could just as well call it a ‘letter to my stupidity’.

While I will ponder about a suitable title for this piece a bit longer, the topic is so well-known and dreaded, it is part of the dark fabric of life.

Read More

How (not to) be sick!

That’s me. I forget how to be sick. The fact that physically I am crumbling under a lot of neuropathic pain, can’t frown my forehead into cute wrinkles, have no feeling on the top of my scalp, have constant bees in my ears of tinnitus, stabbing facial pain and intense fatigue, is something I refuse to show anyone carrying a medical degree. It’s a survival instinct of sorts.

Image Charles Darwin

You’ve probably been there before.

You say to yourself… “I will absolutely, unequivocally, no-doubt-about-it stay under the duvet to get rid of a bad ear infection, facial pain, relentless fatigue and a bout of the flu.”

Sometimes you also think, “I suppose everyone has a point when they say I have to listen to my body a little bit more.” Read More

Are you Cinderella yet?

“Seeing the world with fresh eyes every morning is something other people do. I try to get my innate sense of curiosity and wonder going when I wake up, but my enthusiasm only reaches as far as, “Oh look, both my eyes are open!” I re-evaluated my night-time activities, so, as those dubious sleep and pretend-to-be-awake-games only lead to more excessive MS fatigue.”

Almog albalach_Clock Flares_YEJqQwSome days I feel like a half-baked Cinderella. There’s some promise at 8 am, but by 10 am my fairy tale book is closed until further notice. In the background, that all-important Cinderella clock keeps ticking forward. My body is in a rut: sleeping, eating, exercising, resting, eating, sleeping and back again.

And that Cinderella shoe?

Taken by someone else altogether.

In other words, and very much like a psychologically broken record, I keep finding out that I am 100% present, but physically I am a goner. Read More

Medical terminology?

“Because fatigue does not show a relationship with how many plaques your MRI shows, it is often hard to gauge, even though it does predict later brain atrophy in the posterior parietal cortical lobes. Also, MS fatigue comes in two different varieties, the primary and secondary type of fatigue.

During functional MRI scans for physical and cognitive tasks, it was clear that inefficient reorganization of a damaged central nervous system took place. MS fatigue is also a medical fact, so, and is associated with other neurological symptoms.”

Image terminology

Click image to view Medical Dictionary

One of the many issues ill people struggle with, is trying to explain how or what their clinical symptoms feel like. Vice versa, and after another round of being a guinea pig during clinical excellence exams for already established doctors, it was clear that many people request non-medical terminology from their doctors also. Read More

Eyes of sorrow

“I am utterly afraid of losing my eyesight completely. The pleasure I assign to them is felt every minute of every day. Reading a book, watching the sun set behind the mountains, seeing a flower open during the day, catching those few rays of sunshine in grey clouds… I am often in awe of the images my eyes capture and send to my brain. These images tease and taunt, are overjoyed or full of sorrow, want more or have enough.”

With World MS Day 2015 now gone for another 365 days, I shared a few words yesterday about one of the things I hardly ever talk about in regards to my own MS: the day I woke  up without sight in my left eye, and the subsequent fear of permanently losing my eyesight.

We use our eyes to learn, navigate, assess and appreciate. They help our brain understand our environment and sometimes, as peculiar as it sounds, we use them to listen. Read More

Hope cures old wounds

“The illness is mine, but the tragedy theirs,” when asked how my family feels about my condition. When I entered the MS academy, I read the small print and knew it wouldn’t be a 365-day holiday. However, I tolerate MS. There’s no resentment or blame, no more heartache, guilt or doubt. I find solace in seeing science produce more and better research results and medication. Clinical trials are moving forward at a pace that will eventually lead to an easier life with an illness that is as fickle as MS.”

10505565_271992656337777_3335423019850516985_n‘Hypochondria? It’s the only disease I haven’t met yet.’ One of the easier jokes I can actually remember as I simply don’t do can’t remember long ones.

MS? Awkward, puzzling, easier said than done, and the type of illness that carries this tagline, “The illness is mine, but the tragedy theirs,” when asked how your family feels about your condition. Buzzwords that don’t exactly calm down an overactive mind.

Any illness is unwelcome, that much we can agree on. MS can strike in so many different ways that your life often resembles a war zone. When I entered the MS academy, I read the small print and knew it wouldn’t be a 365-day holiday. But, if one good thing has come from being diagnosed ten years ago, it’s the perception that no matter what happens, life goes on.

And boy does it go on. Read More

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