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....
and often the side effects of the surgeries which are extremely delicate and rummage around between the nerves under the brain that lead to the face, neck and head, help alleviate one kind of TN pain, but can leave you with or trigger another kind of pain. 

The MVD brain surgery is the closest surgery to a cure, but for some it only lasts for a number of years and for others just a few months. Many have suffered through multiple brain surgeries hoping for a better outcome.

In J's case, 2 other nerves in the back of his head close to his scar were damaged during surgery. These nerves are over sensitive and jangled and with no trigger or clue can act up at any time. They live so close to his trigeminal nerve, that when they act up his still extremely sensitive TN nerve thinks it is feeling pain and so J feels symptoms of something called Atypical Trigeminal Neuralgia (ATN) or type 2 TN. 

This pain often begins with a brief warning when his TN surgical scar becomes tight and painful. (He really is Harry Potter). 

It then leads to intense, one-sided head pain that bores into his forehead and often spreads down to his eye, face, mouth, gums and teeth. Mostly he is able to manage it with over the counter meds, but sometimes it takes hold and requires very strong meds, that may include injections he self-administers and in some cases he has had nerve blocks from the neurologist directly into the nerves in his head. (If you have ever had one in your shoulder or knee imagine having it into your skull in an extremely sensitive spot. I thought I might need sedating and I was only watching!)

So these last seven years (since first diagnosis) have been a journey for us in many ways. We have lived with the lows and highs of stabbing, burning, electrical pain, the hope an MVD would cure that and the news that it has. 

But J now lives with ATN as a chronic illness with deep pain that comes and goes with no warning, can remain 24/7 for days and is still a beast to contain. He still takes a concoction of trigeminal neuralgia meds on a daily basis and more meds to counter their side-effects. (We joke that we are Walgreens' emergency suppliers-the pharmacy we use!)

Amazingly to me, since returning to work after his MVD, he rarely misses a day of work and gives himself 100% to his work commitments. He lives with and manages pain, I don't think most of us can imagine.

But what has this meant for us as a family? What have we learned about living with a chronic illness and how has it changed our lives?

It is our social life that is most affected. He conserves his energy for work.The children and I all live with J's illness that has no pattern or cycle. We rarely make plans far in advance anymore. Very busy week days for J mean often, he takes it very slow at weekends.When this happens, he often sleeps for much of it, leaving the kids and I as an incomplete unit without warning or ability to plan.(Well, Jacob and I. Benjy and Aron are excellent competitiors for number of hours slept!) 

 It is a lonely, extremely painful, relentless, unpredictable and exhausting journey for J as patient and me as caregiver. 

There is no end to this for us. 

This is our new normal yet it feels very old.

3. We need YOUR help to get the word out about TN. 

TN is so rare and misdiagnosed that even the World Health Organization (WHO) does not recognize it. This means TN does not get funding, enough research or the publicity it needs to ensure sufferers receive a quick, accurate diagnosis, effective treatment and a more permanent cure.

Here are 5 things you can do to support finding a cure. (None involve giving $$$!)

• Sign the Petition. We need 10,000 signatures on a petition for the WHO to add it to their 'Health Topic' List. Click Here to sign the petition and to learn more about the importance of WHO recognition.
• Learn About TN & Spread the Word. TN gets wrongly diagnosed and people suffer for years, having painful and unnecessary root canals and other dental work. So if you are a doctor/dentist or married to a doctor or a dentist please go and learn about it. If you know a doctor/GP/ neurologist ask them if they know about it. J was very lucky that our primary care physician, and excellent diagnostician Dr Aimee Seidman suspected TN from the first time he visited her with sharp, electrical, stabbing face pain. She sent J to an ear nose and throat specialist who made sure there was nothing else going on and then to a neurologist who also recognized the symptoms, within 4 days of visiting our primary doctor. Many people do not get to this point for YEARS.
• Repost this Blog Post and encourage others to read it
• Support International Trigeminal Neuralgia  Day on October 7th, by learning more about TN and displaying the TN ribbon on your Facebook page or purchasing a TN ribbon. 

Find more support and information here:-

The Facial Pain Association

TNAUK

The Facial Pain Research Foundation

Trigeminal Neuralgia Awareness Day - October 7th 2014

Trigeminal Neuralgia Support Groups

I know many of the amazing people, (some TN sufferers themselves)  who have founded these support groups. I greatly appreciate  and want to thank them for their tireless effort to support TN sufferers and their families.

 Treatment Diaries -Private and anonymous support for many illnesses, including TN  @treatdiaries

TNNME Trigeminal Neuralgia And Me -Facebook Support Group and Advocacy @TNNME

End Trigeminal Neuralgia open & closed  FB support group
@EndTN @Rambling_prose

Support For the Supporters of TN - Trigeminal Neuralgia  Closed Support group for Caregivers

Watch and share:-

iCNN has a video about TN aka The suicide Disease Trigeminal Neuralgia aka The Suicide Disease

Thank you for reading to the end of this post. I truly appreciate you finding time to understand TN and its effects. Now please help us find a cure for TN warriors and our families and leave a message to let me know what you are able to do to help, from the list above.

Have a low pain/pain free week.

Gillyx

 Please email me at gilly@bringingbooksofcomfort.org or leave a comment on this post below. I'd love to have your feedback. 

Getting Brainstorm in your inbox every week, is simple.

Enter your email address below to subscribe and follow the prompts.
Check your spam folder for the confirmation email, if you don't see it straightaway in your in-box.  See you next week!

Enter your email address:


Delivered by FeedBurner