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…... 

Healing Fractured Lives: What You will Learn From the Wisdom of a Holocaust Survivor & an Ancient Art of Pottery Restoration

The death on Feb 23rd of the oldest Holocaust survivor, Alice Herz-Sommer  at the age of 110 gave many of us pause for thought. 

In 1943, by the time she was imprisoned  in the concentration camp in Terezin, Alice was an accomplished musician, married and had a 7 year old child. Playing in the Nazi camp's orchestra, saved her and protected her young son's life. (A documentary of her life just won an Oscar: The Lady in Number 6: Music Saved My Life) 


Having her mother transported to Dachau- the death camp, her husband die of typhus in the concentration camp in which she was imprisoned and witnessing the atrocities of the camps, I wondered how Alice not only managed to contain her feelings, survived the wounds of her experiences, but also pieced her life back together. 

How did  she go on to thrive, grow and live a rich, rewarding, remarkably long life?

There is nothing that can compare to the horrors and evil of the Holocaust, but Alice's story begs the question - how do any of us pick up the shards of our shattered dreams and recover from the difficult challenges life throws at us?

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:

Why The Duchess of Cambridge (Kate) Would Find Treatment Diaries Comforting.

How many of you keep or have in the past, kept a private written record of your thoughts and feelings?

How many of you would feel comfortable publishing your emotions and having hundreds or even thousands of people read them?

During my teens I often expressed my teenage angst in a diary that is so well hidden I have no idea where it is now!

So given my preference for privacy you might be wondering how I came to be writing a blog, especially one that expresses a myriad of emotions.( I often wonder this myself!)

Jennifer Aniston's Guide to Friendship: Keep It Old

You will not be surprised to discover, if you are a regular reader of my blog or know my family, that whilst we were on vacation, someone was unwell. 

This time it was Jacob's turn      (our 12yr old). A week into the trip he developed a raging fever, that lasted five days. After blood tests, he was diagnosed with bacterial pneumonia and put swiftly on antibiotics.

As I stood in the pharmacy on that sunny Sunday afternoon, with my friend Ofra by my side straining to understand  the pharmacist's directions in Hebrew, I suddenly felt tears well in my eyes. 

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:

Breaking News: Why it's not all Black and White

This morning I watched a grey squirrel scamper, spreadeagled, headfirst down the thick magnolia tree trunk outside our dining room window. My first thought was how incredible it was that he was able to do this so effortlessly. My second was that the squirrel was just doing what squirrels are meant to do. 

For the squirrel this feat was no big deal. I am sure he did not reflect on his actions for one second, let alone the amount of time you have just spent reading about him. 

But this got me thinking about our lives and how the hum drum stuff we do without a second thought would look to the squirrel.

Parent Alert: Your Mother was Right

It's a particularly grey, bleak London day here in Potomac Maryland. The dirty white sky and naked tree branches set off against it, look mournful and resigned. 

The streets are empty and I am curled up in our living room trying to write a blog post. 

There are many things I could tell you about.

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.....

A Patient's Top Ten Tips For Surviving A Long Hospital Stay

Many of you will remember that my husband Jonny was rushed to hospital this time last year. He had been suffering a resurgence of an extremely painful facial nerve condition called **trigeminal neuralgia that had spiraled out of control. His medications had stopped working.

The internist couldn't find new meds to control the pain.

The neurologist was out of ideas for treating it. 

And  Carol the Physician's Assistant to one of the finest neurosurgeons in the world at Johns' Hopkins Trigeminal Neuralgia center was at her wits end. 

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.

A Year In Review - Check Your GPS!

Have you ever wondered if you have been running round in circles? Not really moving forward in your life metaphorically, spiritually, emotionally, professionally, academically, actually?

Back at the start of  December 2011, three weeks after Jonny's brain surgery I was  reflecting  on how small our world had shrunk since Jonny's illness had returned in August of that year.

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.

A Mile In My Shoes - update

About 5 weeks ago I wrote a post called How Do You Cope? This was part of a Coping Carnival initiated by a blogger Rebecca at her site Here Come The Girls. A few days ago she published a link to my post along with 5 other bloggers' links about how different people cope with the challenges in their lives.

These stories are stories of struggle, survival and joyful living in the face of great challenges.They are truly inspiring.

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.

Recovery Part 3 - What Does Recovery Look Like?

***This is the third post in a series about living with and recovering from serious illness. The first post Recovery-The New Normal appeared two weeks ago. The second post Recovery Part 2- Poem In Your Pocket appeared last week.***

 

I really thought I knew what recovery looked like. I started to write about Jonny's recovery from MVD brain surgery, the moment he emerged from the ICU back in early November 2011, until starting this blog in February. I measured it in terms of Celebrating the Small and Big Milestones. I described it as Navigating a Labyrinth, I talked about  Two Steps Forward One Step Back. ( Please see Brainstorming, for all these posts and an explanation of MVD.) I thought I had it down.