Tuesday, October 7, 2014

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…... 

If you've given birth or watched your loved one in the process, you know how horrendous labor pain can be. But you also know for sure, that you can have an epidural to relieve the pain and that there is an end point: a baby and an end to the pain.

If you've had a kidney stone, you know how unbearable that pain is and how you can't concentrate on anything whilst you are suffering. But you know it will pass or the doctor can help to break it down and you will not suffer from it endlessly without an end point or a break.

Trigeminal neuralgia pain is worse than either of these conditions and can last indefinitely.

So, what is trigeminal neuralgia?

Why is it so painful? 
Why am I talking about it?
Why have I chosen this week?
What can YOU do to help?

Here are 3 Things I want you to know:- 

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

My husband ( J) was diagnosed with it 7 years ago.

What is trigeminal neuralgia (TN)?

      TN is an excruciatingly painful and debilitating condition, known as "the suicide disease." because those who can find no relief sometimes consider taking their own lives.
 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. Why am I still talking about Trigeminal Neuralgia?

 had brain surgery 3 years ago to put an end to  his TN which was no longer responding to the strongest 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,  the brain surgery was remarkably successful. 

However that is not the case for every trigeminal neuralgia sufferer. Some are not eligible for this kind of surgery and for others it does not work and can exacerbate the condition.

J did have some nerve damage from the brain 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. 

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 a chronic pain condition, I don't think most of us can imagine. 
His friends will tell you that he handles it brilliantly!

This is our new normal yet it feels very old.

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

Today October 7th  is World Trigeminal Neuralgia Awareness Day.

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 3 things you can do to support finding a cure. (None involve giving $$$!)
  • Repost this Blog Post and encourage others to read it

  • 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 TN.

  •  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 an accurate diagnosis for months or YEARS.
Find more support and information here:-

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

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.


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  1. It is so encouraging to hear that J and you have absorbed the shock of living around and through TN. We have too although no more uncontrolled bouts of pain Franco has anaesthesia dolorosa which is very waring but the pills he now takes really do seem to work where as before he felt they made no difference at all. Bless you both,

    1. Thank you, Jo! Your support has been instrumental in helping me through. The diagnosis of anaesthesia dolorous is so very tough. I'm glad to hear Franco has medication that is working for him.Long may it last. I hope you are painting up a storm! Gx

  2. Thank you for writing this Gilly. People living with TN and other painful conditions really appreciate all the support which people like you give.

    1. Liz, I'm honored to be part of the campaign to raise awareness. However the real work every day is being done by TN warriors such as yourself who live with the illness and support others. You do this through your endless advocacy in general and your FB support group EndTN, in particular. We must find a cure for TN! Gx

  3. Yes, so important to know. I'm sorry for your husband's suffering and can't imagine how difficult this must be. Thank you for sharing your story and the information. You offer so much to ease the suffering of life, and I appreciate it, Gilly.
    Warmly, Elaine

    1. Elaine, Thank you for taking the time to read and learn about TN. Your compassion and kindness to others, stretch way beyond your own life experiences. Thanks for enriching mine. Gx