End Trigeminal Neuralgia Challenge

New Patients and Awareness Advocacy

We always try to encourage raising awareness about Trigeminal Neuralgia and other Facial pain conditions. However, raising awareness is not for everyone. Living with a chronic illness is a huge deal, and often, just living with the condition is more than enough to cope with, without feeling any pressure to be involved in awareness. People have to do what is right for them.
The following article by Jordan Riggs may help people to understand that it is ok to just sit back and take care of yourself. You must always put yourself before awareness.

A beautiful painting of a pheasant by Jordan

Jordan is an artist and writer in southcentral Alaska.  She currently lives with Trigeminal Neuralgia, Gastroparesis and Chronic Intestinal Pseudo-Obstruction after sustaining nerve damage from nearly a decade of thyroid cancer treatment.

Opinion: New Patients and Awareness Advocacy

by Jordan Riggs

You leave the doctor’s office, stunned at the news your physician just shared.  The blood tests, the imaging scans, the doctor’s examinations: all have come to the same conclusion.  The official diagnosis is the one disease that you were terrified of having.

The next few weeks are a blur of learning how to properly manage the monster that you’re suddenly having to share your body with.  New prescriptions with awkward-sounding names start popping up in your medicine cabinet.  Appointments to referred specialists are scheduled, then re-scheduled to accommodate the doctor’s choice to extend their vacation.  You struggle with how best to notify your employer about the new diagnosis, as well as the long-term prognosis: should you warn them about possible deterioration in your job performance due to the disease’s symptoms and medication side effects?  Or ‘play it by ear’ and hope that they won’t notice?  Some family members are supportive, while others question the legitimacy of the diagnosis and suggest that you get a second (or third) opinion.  Friendships are tested as socializing abruptly transitions from fun to burdensome.  When the disease’s symptoms (or the medication side effects) blatantly affect you, oblivious strangers chime in about the latest fad diet they’re convinced will cure you.

The weeks turn into months.  Some longtime friendships have gradually faded away as other relationships are revived and strengthened.  Family members at home have adjusted as well as can be expected, and other relatives suddenly take you very seriously after they looked up your diagnosis online.  Work is challenging, but you’re regaining your old rhythm despite fatigue from the medication.  People start using words like “tough” and “brave” to compliment you, but you don’t feel that way.  You simply feel like you’re surviving, nothing more.

You make the decision to reach out and connect with people who know exactly what you’re going through.  You discover that a support group meets at the local hospital, or you find a group on Facebook with people from all over the world who have your same diagnosis.

Fundraisers.  Colored ribbons.  Tatoos.  Blogs.  5K runs.  Pleas from other patients to write lawmakers to demand more research for the disease.  Reminders of important upcoming dates to spread, spread, spread the awareness.  Organizations, associations, celebrity spokespersons.  It’s all so inspiring and overwhelming at the same time.  Navigating this new chapter on your life has already consumed so much of your time, and now you feel under pressure to become a walking, talking billboard informing the world about your illness.

In the age of social media, the peer pressure for patients to become advocates for their respective disease is intense.  Are you the type who relishes the opportunity to color your hair the same hue as your illness’ ribbon color, using your appearance as a catalyst to educate the public about your disease?  Awesome!  But what if you’re the type who prefers to only occasionally discuss your health issue, and prefer to blend in with healthy people and live normally?  That’s okay too!

As patients, successfully managing our illness is to be true to ourselves and live with our disease in a way that benefits us the most.  There is no “right” or “wrong” perspective regarding your very personal journey.  An unspoken obligation seems to exist that pressures new patients to jump on the awareness bandwagon.  However you choose to engage (or not engage) in these activities is up to you, and your choice doesn’t make you a “good” or “bad” patient within the community.  When living with a life-altering illness, self-awareness trumps public awareness.  Your only "real" job as a patient is to take care of yourself.  Expecations placed on you are just that...expectations.

So whether you’re making art for an upcoming fundraiser - or are trying to come up with clever ways to avoid talking about your disease - keep it up.  Stay true to yourself.

Dr Kenneth Casey MD

There are so many facts on the internet about Trigeminal Neuralgia, and sadly many of those facts are wrong. The problem is that people don't realise they are wrong and believe them. 

The book, 'Striking Back', written by Dr Kenneth F. Casey MD and George Wiegel, is considered to be an excellent point of reference for any facial pain sufferer, with correct information about conditions and treatments.

Dr Casey, who is on the medical advisory board of the Facial Pain Association, is concerned that many patients and caregivers believe they have a bleak forecast when they read some of the information online. He has very kindly sent us the following statement so that we could publish it on our blog.

Neuropathic facial pain has many different faces, of which trigeminal neuralgia is only one.  When we first hear the diagnosis of trigeminal neuralgia, most people go "What the heck is that?"   As people read about it, the material in print can be sometimes very scary and daunting.  Unfortunately as with most situations, most of the stories online and even those from people in support groups represent the patients for whom a cure has remained elusive.  However, if you read carefully between the lines, many of the patients and many of those that you never come in contact with had the diagnosis, received appropriate medical therapy, in some cases chose to go on to surgical therapy and are living pain-free.  We have over 9000 cases of which 75% of the patients have little or no pain following surgical or medical procedures.  Similar numbers exist in France with a physician Lyon; similar numbers exist in Italy and similar numbers in England.  For those who aren't familiar, there is a very active support group in Australia where surgical care is a little more difficult to come by.  They have a large group of people who with medications, and especially non-pharmaceutical/non-prescription medications such as high doses of vitamin B12 and the like, are living quite comfortably.

This is not to say that there are some patients who suffer terribly and for those patients, the members of the Medical Advisory Board of the Trigeminal Neuralgia Association have pledged a good deal of their time and careers towards developing additional procedures which may be of help.  At the same time, the trigeminal neuralgia foundation is currently undertaking groundbreaking research looking at the genetics of trigeminal neuralgia and how those genetics may affect the treatments that we can offer to patients who suffer from this particular form of neuropathic pain as well as other forms of neuropathic facial pain.  Starting in 2004 in France, a nonsurgical/noninvasive procedure known as transcranial magnetic cortical stimulation was utilized in patients with neurogenic facial pain of all types and specifically trigeminal neuralgia with significant relief obtained.  Owen was another researcher in the United States who found the same results a year later.  Recently the group in England showed the transcranial magnetic stimulation with a device that is a portable unit has shown that this transcranial magnetic stimulator works quite nicely for migraine pain and now have extended their work to neurogenic facial pain.

The message is that much work is being done.  

New non-drug related therapies are developed.  Different drugs, up to 18, have been tried with success ranging from 50 to 75%, and interest in finding the basic mechanism in dealing with it has never been higher. 

Kenneth F Casey M.D.

With thanks to Dr Casey for his input.

Striking Back is normally available to purchase from the Facial Pain Association or Trigeminal Neuralgia Association in the country where you live.
Those websites can be found in our 'useful links' tabs on the right hand side of this page.