This past week has been a rough one for me, via trigeminal neuralgia.
I have secondary progressive multiple sclerosis and MS-related trigeminal neuralgia. I've had the former since 1995 and the latter showed up maybe a year later.
I frequently receive questions from people who are unfamiliar with the disease & from those who are being evaluated for it***. Ever wondered what this thing is that i keep harping on about? Well, here are my TN FAQs:
1) WHAT IS THE TRIGEMINAL NERVE?
The trigeminal nerve is in your face, running from your forehead down to your jaw. It is the fifth of twelve cranial nerve pairs. It's an important nerve, as it provides and controls sensation to the face.
2) HOW DO YOU GET TN?
Trigeminal neuralgia mainly occurs when:
•there is an injury to the nerve (such as a car accident or sudden blow)
•there is a knot in the nerve...and no, I have absolutely no idea how one goes about getting a knot in one's trigeminal nerve, or...
•It can happen as a symptom of a neurological disorder, like MS. Statistics vary, but TN occurs in no more than 10% of patients with multiple sclerosis.
In addition, some studies show that certain facial piercings, primarily the tongue and the eyebrow, might cause TN. And while dental work is often cited as the number one trigger of trigeminal neuralgia flare-ups, it does not appear to be a cause of the disease.
TN is not contagious, but it does appear to run in some families.
3) WHAT ARE THE SYMPTOMS OF TN?
Some patients say the pain feels like being hit by lightening in the face, over and over again. Others compare the pain to a live wire spewing electric shocks. The pain is, naturally, mostly in the face. It can radiate to the jaw, palate, neck, head and ears. It has been known to either cause or trigger headaches, including migraines.
While experiencing an attack, the sufferer can find it extremely difficult to talk, eat or drink without severe pain. Those activities are also known triggers of TN.
Attacks can last as few as a few seconds to as long as several days. Most patients have TN in only one side (for me, the right side), but some do experience it on both sides of the face.
4) HOW BAD IS THE PAIN?
TN packs a helluva punch, and calling the pain considerable is an understatement. It's generally considered the worst chronic pain disease known to man.
Having had an attack of it during labor (and kidney stones at the same time), I can say with some authority that the TN pain is much worse than giving birth. Not to mention that at the end of labor, you have a beautiful baby to love. At the end of an attack, all you have is some relief...and for how long, no one can tell. It is as relentless as it is unpredictable.
The strain of fighting TN can be overwhelming. In fact, TN is nicknamed "The Suicide Disease," owing to the large numbers of sufferers who attempt to end the pain by ending their lives.*
5) HOW IS IT TREATED?
There are a number of options, depending on the cause of your TN, the frequency of attacks and the average level of pain.
Number one is to eliminate as much as is possible any triggers. Crunchy food, makeup such as blush, wind on the face, etc. There's no way to eliminate ALL triggers (how do you completely avoid sneezing?), but learning to avoid or lessen the impact of triggers is the Prime Directive of TN (bad Star Trek reference notwithstanding).
There are surgical options, such as having the nerve cut or "killing" it by shooting alcohol into the nerve. Those are not an option for everyone, and not without risks. Sadly, some who have chosen surgery find that the pain returns...and in cases, it returns stronger than before.
If you are not a candidate for surgery (or simply choose not to go that route), there are medications that can be used to treat TN, including anticonvulsants and muscle relaxers, as well as narcotic and non-narcotic pain relievers. Some patients have had some success with homeopathic treatments such as acupuncture or biofeedback.
6) I THINK I MIGHT HAVE TN. WHAT SHOULD I DO?
Keep in mind that you are not alone. If you are feeling depressed or despondent, those feelings must be addressed with your doctor ASAP. It is no weakness to ask for help*. If anyone has the right, it's someone who is constantly in fear of being repeatedly struck by lightening in the face!
Next, I strongly encourage you to begin a pain journal. Note the date, time and severity of the pain on either the 1-5 or 1-10 pain scales (I use the 1-10, because it offers more flexibility and greater accuracy.) Also note any possible triggers (eating, sneezing, blowing your nose, etc), what you have done to combat the pain. It is vital that you note when the symptoms stop; the length of attacks can vary widely.
Journaling not only helps you to discover triggers (wow, I really do have an attack when I eat cauliflower), but allows your physician to see exactly what you are going through. This will help your doctor to make (or rule out) a diagnosis of TN. The journal helps in another way as well. Sad to say, some doctors tend to take patients with records more seriously, if only out of fear of litigation.
You can either keep a handwritten journal, or use one of the many apps on the market. I've tried quite a few, and personally recommend Pain Monitor Lite. This app not only allows me to document the attacks and my medication usage, it creates charts showing my pain levels on a daily, weekly, monthly and 90-day scale. You can even email the charts to your physician from the app.
If you choose a handwritten journal or an app, here's an important hint from Angel: make it one you like using. Buy an attractive journal, or an app you find easy to use. You're more likely to use it and use it often if you like it. A little thing, but it does make a difference.
Another tip: when having a bad attack, either have someone take a photo of you or take a quick selfie (but please, for both pain and aesthetic reasons, eschew the duck face.) You might balk at that one; after all, you feel like excrement and it shows. But remember: your doctor rarely, if ever, sees you at your worst...and a picture really is worth a thousand words.
7) I HAVE BEEN DIAGNOSED WITH TN. NOW WHAT DO I DO?
Getting diagnosed with a chronic disease forces people through the same stages one generally associates with the death of a loved one. This is a normal process, but because of the high suicide rate among TN patients, you must be particularly vigilant about any lingering or overwhelming depression. Learn the symptoms of depression, and ask those close to you to please speak up if they suspect you need help.* Be honest with your physician about your emotional state, and do not delay getting help if you begin to have suicidal thoughts or feelings*.
Talk over your various options for treatment with your physician and keep your mind open. Don't be afraid to seek a second opinion. And let the doctor know if the side-effects of your treatments are affecting your quality of life. You may have to try many different things before you find a regimen that will work for you. Try to be patient, and above all, don't give up.
I cannot overstate the importance of talking with people who understand what you are going through. To that end, one of the first things you should consider after getting your diagnosis is a support group. You can go to one mediated by a therapist, or you can join an online support community dedicated either to TN specifically or chronic pain in general. The online groups are helpful to TN patients because you don't have to speak during an attack! That makes a big difference when you need support but every spoken word feels like an assault.
Groups/communities can be found on Myspace, Facebook, Cafemom and other social media sites. You can also contact The Facial Pain Association: www.fpa-support.org.
8) HOW CAN I MAKE MY FAMILY & FRIENDS UNDERSTAND?
Well-intentioned family & friends can have a hard time understanding what TN is like, and how chronic pain works. These misunderstandings can lead to hurt feelings, frustration and even increasing isolation, so learning how to communicate how you feel can be vital.
Some of the people in your life will feel sympathetic to what you're going through, while others feel pity and/or disgust. Some cannot wrap their minds around the idea that TN pain is worse than childbirth, worse than migraines, worse than a root canal, worse than gall or kidney stones (I've been through all of the above, and let me assure you: TN is absolutely worse). They don't understand why you can't just distract yourself or "not think about it." Some really want to understand how pain affects you, but are overwhelmed by this strange disease they've never heard of before.
Unfortunately, many react by trying to find some way to blame the patient. Their diet is all wrong. They weigh too much, or not enough. They should take up jogging/meditation/hypnosis/and on and on. I've even had people recommend bee sting therapy...which would be impossible for me even if it hasn't been thoroughly proven to be medically useless, as I am allergic to bee stings.
Some of the comments I've heard:
•But you look fine! I can't hurt THAT much.
•Pain is just mind over matter.
•If you got a new hobby/got a job/got out of the house, you'd feel better.
•If you went vegan/got rid of carbs/exercised more/did yoga, you'd feel a lot better.
•You don't need medication. You need a vacation.
•How can you be so tired? You didn't do anything but rest this afternoon!
•I've had (fill in random health issue), and I got through it without needing a support group!
•You're making yourself sicker by (fill in anything I do in the realm of my marriage, my parenting or my hobbies).
•You don't get out enough. You'd feel better if you were having a good time!
•My friend/relative/coworker has (fill in health problem) and he only takes homeopathic treatments, and he can run marathons and poop rainbows!
You'll hear those a lot. A LOT (well, maybe not the rainbow poop one.) Point being: be prepared for a ton of (mostly) well-meaning but ignorant and insensitive remarks from everyone from your parents to your next-door neighbor to the cashier at the coffee shop. A mere mention of your illness will leave you awash in a tidal wave of cockamamie advice in less time than it takes for Rush Limbaugh to eat a bucket of chicken.
Chronic pain is a lot like parenting a toddler: everyone's an expert, so long as they have no experience. And the less experience they have, the more advice they feel compelled to give.
It's this attitude, this "it can't be that bad, you're just lazy and complaining" belief system that leads the vast majority of chronic pain patients to simply suffer in silence, rather than be scoffed at, lectured to or simply not believed. More and more, they stay at home, away from the judgmental and prying eyes. This can lead to, or worsen, depression.
And so I say: forget suffering in silence. Bring on the spoons!
9) WHAT DO YOU MEAN, 'BRING ON THE SPOONS'?!? I JUST WANT MY LOVED ONES TO UNDERSTAND WHAT I'M GOING THROUGH AND YOU'RE TALKING ABOUT SILVERWARE!
I know how hard it can be, trying to convey to those around you how you feel: what the pain is like, and how it affects your life.
That's where the spoons come in.
"The Spoon Theory" is a story written by Christine Miserandino**, and can be read (and downloaded) at www.butyoudontlooksick.com. Taken from an attempt by Ms. Miserandino to explain to a friend how her chronic illness affects her day-to-day life, "TSP" is a brilliant article and fantastic idea. By demonstrating her struggle via spoons at a diner, she opens the eyes of not only her friend but thousands of people.
I struggled for years to explain my fatigue, pain and other various and sundry symptoms with little success until a friend pointed me to "TST." I recommend it highly and have had many people in my life read it. My husband is also a big fan: he says he never really "got it" until he read "The Spoon Theory."
So please, take a moment to read "The Spoon Theory." Pass it on to those you love. And check out the rest of butyoudontlooksick.com. It's a great site for individuals with "invisible diseases" like remitting/relapsing multiple sclerosis, fibromyalgia and Lyme disease, etc.
So that just about sums it up...
...but wait! There's more! A disclaimer! And footnotes! Hooray!
Enjoy, and have a great weekend, everyone!
*If you are feeling overwhelmed, depressed or suicidal, please get help ASAP. Do not wait. Contact your physician. You can also contact the good people at the National Suicide Prevention Lifeline at 1-800-273-TALK (8255) or www.suicidepreventionlifeline.org. They can help you find a therapist or crisis center in your area.
**There is also a Tumblr about the "Spoon Theory" at thespoontheory.tumblr.com. There is a YouTube video by the author explaining "TST" as well as a Facebook page just waiting for you to like it. Go on now. Don't keep it waiting!
***If your question isn't covered in this post, please feel free to leave a comment or email me at Pendragon525@yahoo.com. Be sure to put "Zen Pretzel Trick" in the subject line so I don't mistake your inquiry for spam.
DISCLAIMER: I am not a medical expert. I am a blogger. I write about my own experiences and about my understanding of the diseases I suffer from. Never confuse or substitute any blog or blogger with pertinent medical advice or use instead of a medical opinion from a licensed physician.
Labels: FAQ, MS, multiple sclerosis, pain, Spoon Theory, TN, trigeminal neuralgia