Trigeminal Neuralgia

“Trigeminal Neuralgia…..what on earth is that?”

That was my reaction when I was hospitalised in May 2014 with the most severe right-sided face pain that I had ever experienced in my life. I had been trying to cope with it for 3 weeks with strong pain killers. I was thinking it was just another idiosyncrasy special to me and would soon pass.

Apparently it was here to stay!

I woke up at 4am on the morning I was taken to hospital by ambulance. The pain had got to such a high level, I was physically sick and running a fever as my body was trying to find a way to cope with it. The rigours had set in and all I could manage to say to my husband was “ambulance, call the ambulance”

I had no idea what was going on but I knew I needed help.

Once in Emergency at my hospital (which I must point out, I am now on first name basis with many of the nurses on the wards due to my frequent flyer status!) the doctor in ER came and listened to my story.

Within minutes he diagnosed Trigeminal Neuralgia, although that diagnosis did need to be confirmed by Specialists.

I was admitted to a ward within the hour.

A long stay lay ahead while my medical team struggled to get this first major Trigeminal Neuralgia attack under control. The first 4 days were pure hell until they found the right medication for my case. Often it’s a medication called Gabapentin that works well for TN. It unfortunately did absolutely nothing for me, despite the dose being constantly increased.

My Clinical Immunologist is the Specialist who looks after the majority of my medication and my Rheumatoid Arthritis. When he visited me on the ward the next day, he was very disappointed I had left the situation so long before coming to the hospital. He’s very hard to read at times but obviously he really does care!

How was I to know?

The Neurologist who saw me once I was admitted, was much more understanding as to why I had deferred seeking treatment. I asked him how on earth can I tell, with this idiopathic complex disease, if a symptom is one that will just go away on its own or one that is more serious?

I don’t want to be running to the Dr every 5 minutes saying that something hurts or doesn’t feel right. It’s one of the hardest parts of having such a difficult disease. He completely understood that I didn’t want to waste anyone’s time but all my Specialists re-iterated that my condition is serious and I am never to hesitate in getting treatment if a new symptom arises.

It’s all a juggling act and one I think I’m getting better at handling…until the next curve ball comes along of course.

So after an MRI, a Lumbar Puncture (which actually wasn’t as bad as I expected it would be) and 10 days in hospital, I was officially diagnosed with Trigeminal Neuralgia.

So, what on earth is that?

Trigeminal Neuralgia is inflammation of the trigeminal nerve, causing intense facial pain. It is also known as tic douloureax because the intense pain can cause you to contort your face and move your head to try to get away from the pain. That type of movement is known as a tic.

The pain of trigeminal neuralgia is intense. There is often no known cause but it can be linked to auto immune diseases, most commonly Lupus and Multiple Sclerosis.

Idiopathic trigeminal neuralgia is a clinical diagnosis and often no testing is required after your Dr has taken a history of the situation. In my case my Specialists wanted to rule out MS so that’s why I needed the MRI and Lumbar Puncture.

My Neurologist however still believed, despite my Lumbar Puncture results being ok, that I do in fact have an inflammatory nerve disease. My MRI was inconclusive for MS but falls into the “probable” category.

We decided to park all thoughts of probable MS as I had more than enough to contend with. In all reality my treatment at this point wouldn’t have changed anyway. The medication I was eventually given to treat the Trigeminal Neuralgia (Lyrica), worked and continues to work really well today.

My Philosophy of “One Day At A Time”

As I was discharged from hospital in May 2014, with yet another diagnosis to pack in my suitcase, I had no idea what lay ahead.

Just 5 months later the strongest bone in my body (my femur) was about to have a major pathological break and I was to be diagnosed with a rare, debilitating and progressive bone disease.

It’s quite probable that my bone disease is the cause of my Trigeminal Neuralgia. My bones are so dense that they impact all kinds of nerves.

Some days, as I look back on my story, I am just so relieved that I didn’t know what lay ahead. I feel like I have been protected from being completely overwhelmed.

The philosophy of “one day at a time” is a really good one as far as I’m concerned. I am a strong believer that we are only given in this life what we are able to cope with (even if we feel like it’s a lot to bear). So if that means complex diagnoses and health events will arrive unannounced in their own time, I’m ok with that.

Probably just as well I’m ok with that idea as they do seem to be in the habit of showing up when I least expect them!!

Take care

Sam xx

One day at a time sweet Jesus
That’s all I’m asking from you.
Just give me the strength
To do everyday what I have to do.
Yesterday’s gone sweet Jesus
And tomorrow may never be mine.
Lord help me today, show me the way
One day at a time.

One Day at a Time” is a popular Country and Western style Christian song written by Marijohn Wilkin and Kris Kristofferson

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