3 Things YOU Need To Know About Trigeminal Neuralgia: My Husband's Story

A while back, whilst working in Oregon, my husband, in agonizing pain, took himself to the emergency room at the local hospital. 

He had just suffered a severe burn, about 5 x3 inches, on his stomach. (How that happened, is a story for another time.)

The attending doctor asked him to rate his pain. He rated it an 8/10 on the pain scale. 

She was very surprised as she said she would have  expected a 10/10 and tells male patients, that this type of second degree burn is the worst pain they will ever experience. 

She added, 

"But having seen from your medical history, that you've had trigeminal neuralgia, I now know you've experienced worse pain than any burn like this could give you." 

Her comment was shocking. Not just because she was one of the few ER doctors who has heard of trigeminal neuralgia, but also because she re iterated, what sadly, we know: there is no known pain worse than that associated with trigeminal neuralgia…... 

Our Family's Journey With Trigeminal Neuralgia - What YOU Need to Know.

Thank you Rebecca Thorpe.

Trigeminal neuralgia is a chronic illness my husband (J) was diagnosed with 6 years ago. 

Here are 3 Things I want you to know:- 

1. Trigeminal Neuralgia  is a brutal, relentless, unpredictable disease with no permanent cure.

What is trigeminal neuralgia (TN)?

Source: Trigeminal Neuralgia Association UK  

      TN is an excruciatingly painful and debilitating condition, known as "the suicide disease."

     
 It is regarded as the most painful condition that is known in the medical world. It is more painful than kidney stones, giving birth or a heart attack.

     
 It is a disorder of the trigeminal nerve in the face which results in its overreaction to everyday stimuli, such as talking, eating and light touch.

      
TN triggers a violent, electric shock-like pain which can last for a few seconds to a few minutes and repeat in episodes lasting weeks and months.

     
 The pain can also be described as stabbing, shooting, burning, excruciating, and unlike any other pain previously experienced.

     
 Normal painkillers, even morphine, have no effect and initial treatment with anti-convulsant drugs can have very unpleasant side-effects.

      
When these medications cease to be effective, or the side-effects become intolerable, various types of surgical procedures are carried out but to date there is no known cure.

     
 Although uncommon, children and babies can also have TN.

2. My husband is still living with a form of this disease. 

He had brain surgery 3 years ago to put an end to  his TN which was no longer responding to strong drugs of any kind.  I wrote in my updates at that time, that the surgery had successfully taken away the brutal stabbing, electrical pain that he was experiencing in his face 24/7 without a break before the surgery. Thank goodness that still holds true and we are extremely grateful for that outcome.

However TN is a dark enemy....

The Guide to Thriving Beyond the Crises in your Life: 4 Effective Steps

It's not just tea that revives you

As a spouse, parent and caregiver I have been on hyper-alert for 5 years.

Why?

It’s because my family is very good at having serious medical conditions with unpronounceable names.

My husband was first diagnosed with trigeminal neuralgia in 2008. And if trigeminal neuralgia wasn’t difficult enough to say and remember, in 2009, our oldest son Benjy won the prize. 

He was diagnosed with a heart condition called Wolff Parkinson White with supraventricular tachycardia. (Try saying that a few times, very quickly.) This condition is sometimes connected with sudden death. Benjy's version of this syndrome meant that he needed two heart surgeries, between January and April  2010. 

My husband had invasive brain surgery ( MVD) for his trigeminal neuralgia in 2011. You can see why I might live on high alert!

Living on hyper-alert puts you in survival mode. You are either waiting for a symptom to show itself, in the midst of an attack, or recovering from the fallout:

Moving from Hurt to Healing: How 1 Step Back Can Take You 2 Steps Forward

The Lily we planted has bloomed!

This morning, like every morning as I went out to the car in my driveway, I glanced at the lily. Aida and I had planted it in memory of her sister, who had died suddenly back at the beginning of May.

During difficult times, it is often hard to picture life any other way. In the heart of a crisis, serious illness, medical emergency, divorce, bereavement or job loss it is difficult to imagine that things will ever be different or better. Looking out into the future is frightening particularly if what you imagine is more of what you are living through or dare I say it, worse. Sometimes things do get worse, before they get better. 

Rarely do they stay the same. 

I Wouldn't Choose This Lens, But It Has Sharpened The Image. Here's Why.

We are vacationing in Israel. Today we visited Machane Yehudah, the food market in Jerusalem. If you've ever stepped inside you might be wondering why on earth we would venture there on the eve of Passover, when we didn't need to shop. 

But it was precisely the chaos of it that drew us into the fray...... 

Why We Need to Stop to Admire the View.

( Please note this was previously published on my blog, when it was just a month old in April 2012 and Jonny's health details relate to that time- the message however, I think is timeless!)

As we approach Passover, I have been thinking about the story of the Exodus from Egypt, which we are going to retell next week at our Passover table. These slaves from Egypt were to spend 40 years journeying in the desert. Their goal was to reach Israel. But for many of them, the trip through the desert would take their whole lives and I wondered if  any of them ever stopped  for a minute to admire the view.

7 Ways to Help a Child Deal with a Parent Being Seriously Sick

My 12 year old son Jacob, has been inspired to start his own blog. This is a post he wrote for it, without help of any kind. He wants adults to know how they can help children like him, who suddenly find themselves in a situation where someone they love very much is very sick and has to have major surgery. 

He also wants to bring comfort to other children by letting them know they are not alone in having these feelings. 

If you would like more information about Jacob's blog, please email me at gilly@bringingbooksofcomfort.org or leave a message for him below! -Gilly

About a year ago, my dad had something called Trigeminal Neuralgia. He had something going on with a nerve in his face, and had to have brain surgery. 

As an 11 year old child, I was scared. 

I couldn’t handle it on my own. I needed some things to help me feel better:

What a Crisis Can Teach Us About Celebrating.

About six years ago I was sitting at a red light muttering to myself.  

No, I did not need to be referred to an asylum. But I had been getting myself very worked up about an upcoming birthday party for my almost 6 year old. (Jacob)

The endless to do list was swirling in my head as I remonstrated with myself  about planning a party for 18 kindergarteners in my house in a particularly snowy December. As I pulled up to those traffic lights, I was stressing about the weather and the games, party gifts, food and home made birthday cake.

And while that nagging voice continued, I suddenly had an epiphany.........

Snow - How to Find a New Perspective on an Old Problem.

Snowy Elstree, UK by Sara E via FB

I want to introduce you to my friend Jo who lives in England. Jo's husband is in his 70s and has had trigeminal neuralgia* for 7 years.  Jo and I 'met' when she stumbled upon my blog. We have emailed back and forth and I have certainly gained strength, insight and tremendous support from my new pen pal and our growing virtual friendship. 

One of the things we have discussed a number of times,

Do You Ever Feel That Life's Unfair?

Eight years ago, my very close friend was diagnosed with stage IIIC breast cancer at the age of 39. Her 3 daughters were all under the age of 7 at the time. She went to a support group for breast cancer survivors. Expecting unqualified support and upbeat messages at the first meeting, she was very surprised by what the facilitator had to say. Her message that day, and I paraphrase, was this:-

An Expat's View - If I Can Move, So Can You! Some Tips For Success

As the world gets smaller we find ourselves with bigger opportunities in faraway places. 

Over the weekend, we met up with a British family who had just moved into the Washington DC area. They came for tea    (what else?)  and as I listened to their week of firsts in a new country: first visit to the grocery store, hunting for a rental, finding a school, buying coats for the kids etc,  it brought me back to the beginnings of each of our moves to new homes in countries around the world.....

The Jigsaw Puzzle Of Life

There is nothing like sudden or unpredictable illness to throw you off kilter. In the tightly packed, fast paced lives we lead, there is little room for a throat infection, a virus, a broken limb or something more sinister. And yet when it happens, with no choice but to accommodate it, you make room for that illness in your lives and adapt.

No Job Description- Caregiving Part 1: Search and Rescue

Harry Potter World, August 2011

Almost one year ago exactly, Jonny began a new battle with Trigeminal Neuralgia*(TN). One year on and 2 surgeries later, Jonny's pain is very much  under control.  From this positive vantage point I have now begun to reflect back on how we coped during  those frightening unpredictable first days and weeks. In particular I have been ruminating on how I learned the ropes of my new  job as caregiver, a job that like Jonny’s illness was thrust unceremoniously and without notice on     me.

Beach Break -Tales and Tips

Jonny and I are at the beach. It is a cloudless day and we are sitting side by side in low slung beach chairs. We have some shade from an oversized umbrella and our feet are partially buried in the white, clean sand. The sun is bathing us in its warmth and we are watching the waves tumble onto the shore as the Sandpipers hop away from the foamy puddles just in time.

If you feel as though you have read this before, you would be right.

How Do You Cope?

    I am writing this blog  after four days without power in our home, as a result of the most incredible storm on Friday night. It crashed through the Washington DC area, devastating lives, damaging a lot of property and leaving millions of people without power in sweltering 100F weather. One of my friends from out of state texted me asking,

        How are you coping?