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(Today’s blog post is part of the Blogging From A to Z Challenge during which writers all over the world blog each day in April based on a corresponding letter of the alphabet.  These are my personal stories about living with Trigeminal Neuralgia, the most painful diagnosis known to man.)

Just to be clear…nothing I am posting here has anything to do with the Patient Bill of Rights.  I suppose I could research that, but I already have 10 tabs open in Chrome.  When I say, “Know You’re Right” I’m referencing you, as the keeper of your castle.

When I was employed, I often had to make presentations to the big mucky-mucks at my company (I was a medium-sized mucky-muck).  Or meet with people whose knowledge of things like Finance and IT far outpaced my own.  I developed some skills (and learned some from mentors) that I think served me well when I later had to meet with doctors about my TN, especially Neurologists.  So here’s a few unsolicited (but hopefully useful) recommendations.

First and foremost, you are your own best advocate.  Take control of the appointment from the start.  Remember, doctors aren’t doing you a favor by seeing you – it is their job for which they are paid.  Handsomely, I suspect.

Declare your expectations.  Whether you’re a first-timer or a “regular”, tell your doctor up front your goals for the appointment.  Do you want to get a confirmed diagnosis of TN?  Do you want to discuss alternative treatment options?  Whatever it is, set the tone.  Say something like, “I was referred to you by Dr. So-and-So who suspects I have TN.  I’d like your opinion of this diagnosis or to understand the steps I need to take to confirm it.”  Or, “My current meds don’t seem to be working.  I want to discuss options for alternatives or more aggressive treatment.”

Make lists in advance.  Don’t be intimidated to ask questions – and lots of them – during your appointment.  Bring a list.  And tell your doctor up front that you have a list.  Make sure he/she knows that you don’t plan on leaving the exam room until all your questions are answered.  Don’t be a jerk or anything, just wave your list around a little and say something like, “I have a whole bunch of questions to ask you.”  Also, in the days/weeks leading up to your appointment, make a list of your symptoms and possible triggers.  When does your pain hit, how does it feel, etc.  We tend to think we’ll remember everything once we get into the exam room.  We don’t.

If possible, bring a buddy.  Doctor’s appointments can be daunting – especially for a diagnosis like TN.  If possible, bring someone along with you for a second set of ears.

Bring test results.  Usually people end up at a Neurologist office after traveling down a meandering path from their Family Physician to their Dentist to an ENT.  If you’ve had any tests taken, like a sinus CAT scan, bring the results. Help your doctor to rule out other conditions that could be causing your pain.

Wine before liquor never sicker.  One thing your new doctor might do is get you started on medication.  They all have side effects, so there’s no way around that, but some can be impacted by other meds you’re taking.  Write down everything – including OTC and supplements – with their dosages and bring it with you.  Make sure your doctor reviews these once he suggests a prescription.

Repeat after him/her.  Chances are you didn’t go to medical school.  You shouldn’t be expected to know doctor stuff.  And some doctors are too smart for your own good.  If he/she says something that you don’t understand, repeat what they’ve said to you in normal person language.  Listen to what they tell you, and if confused, say something like, “Let me repeat this back to you, so I’m sure I understand.”  Then restate what you’ve heard in your own words.  Non-doctor words.  Third grader words.

Do your reseach part 1 – Our first inclination when we hear we might have TN is to jump on the internet.  Do so thoughtfully.  Stick to sites like WebMD, the Mayo Clinic and and the Facial Pain Association.  News reports tend to go for the extremes.  Everyone is different.  Don’t buy into the hype or jump to conclusions.

Do your research part 2  – Doing some research before your appointment may help you come up with better questions to ask.  But my suspicion is that some doctors are a bit suspect of someone coming in with a self-diagnosis.  Try to refrain saying things like, “but the internet says…”

It’s not an appointment, it’s a date.  And you’re not going to just marry anyone.  If you don’t like your doctor – if he/her seems rushed, doesn’t make eye contact, doesn’t mesh with you personally – go to someone else.  Granted, getting an appointment with a Neuro is harder than getting an audience with the Pope, but you should feel comfortable and confident leaving their office.  If not, break up with him/her.

Be nice.  Okay, that’s not just my recommendation for doctor’s appointments, it’s my recommendation for life.  Being nice, maybe a little friendly even, goes along way.

(Today’s blog post is part of the Blogging From A to Z Challenge during which writers all over the world blog each day in April based on a corresponding letter of the alphabet.  These are my personal stories about living with Trigeminal Neuralgia, the most painful diagnosis known to man.)

I no longer weigh myself.  I think my scale is buried underneath two boxes of emergency Count Chocula in my pantry.  (Don’t judge.  They only sell it once a year now.)  All I know is that I’m down to three pairs of pants that fit.  And really?  That’s more information than I need at this point.

I do base my days on a different scale.  One that all chronic pain sufferers find all too familiar – the pain scale.  You probably know what it is.  It’s hanging in many doctor’s offices and on the walls of emergency rooms.  It features a happy face that goes from Mr. Delirious (0) to Mr. Depressed (10).

For me, a good day is around a five on the scale – slightly bothersome but not so much to distract me from activities.  An phenomenal day is a four.  I haven’t had anything lower than that in months.  But I have been at the upper end of the scale quite frequently.  I have at least two days a week when my pain settles at seven and a couple that are an eight or nine.  I’ve never had a pain scale ten day, because I get the sense my pain could actually go higher, so I want to have a way to rate it.

But therein lies the rub with the ol’ pain scale.  It’s completely subjective and because of that, I think the tendency of the medical community is to assume people overestimate their pain.  And honestly, how can someone dispute that philosophy?   I’d like to think that I’m a good little soldier, that I have a higher-than-average pain threshold, but I don’t really know.  What if I’m really a wimp?  What if I have the tolerance of a superhero?  That would be kind of awesome.  I could get a cool catsuit in leather or latex.  No…wait…that would just serve to validate why I only have three pairs of pants that still fit.  I guess I’ll just have to be content with where I am right now – like Mr. Indifferent Face (5) on the pain scale.

(Today’s blog post is part of the Blogging From A to Z Challenge during which writers all over the world blog each day in April based on a corresponding letter of the alphabet.  These are my personal stories about living with Trigeminal Neuralgia, the most painful diagnosis known to man.)

True or False:  Trigeminal Neuralgia is all in your head.

Did you say True?  Right!

Did you say False?  Also Right!

Okay, it was a trick question.  It’s all in the interpretation.  Anatomically speaking, TN is all in your head.  I kind of think of it like this…imagine your head is the penthouse of the skyscraper you call “me”.  There is an electrical outlet toward the back of your head.  It’s the only outlet in the room and you have a lot of stuff to plug in.  So you hook up one of those orange industrial extension cords.  Then you plug in a bunch more little extension cords in varying lengths to reach your lamps, computer, TV, stereo etc.  Well when you have Trigeminal Neuralgia, one or several of those cords gets shorted out and goes haywire, spewing out random pulses of electricity that makes the lights flicker and fries your hard drive.  Medications are sort of the surge protector meant to keep the current of electricity running normally, but they don’t really work.  So yeah, Trigeminal Neuralgia is all in your head.

Then again, it isn’t.  It is not uncommon for people who have TN to be treated as if theirs is a psychosomatic condition.  Sadly, I have even heard stories of medical professionals who have this viewpoint.  I’m lucky.  I have a supportive family who never questions my disorder as not being legitimate or used as an excuse to bail on responsibilities.  But like I said, I’m lucky.  I know there are people whose family or friends look upon TN with suspicion – something you can just “think away”.  They view it as a “nervous condition” as opposed to a condition of the nerves – and that’s a big difference.

I’m a pretty open minded person and also somewhat pragmatic.  I view things from all angles.  So, I’ve asked all my doctors the same question.  “Is there really something physically wrong with me or am I crazy?”  I think my Neurologist put it best.  “The mind can do many miraculous things – both good and bad – but it can’t make your face swell.”  Case closed.

So is Trigeminal Neuralgia all in my head?  Yes, yes it is.

And is Trigeminal Neuralgia all in my head?  No, not it’s not.

(Today’s blog post is part of the Blogging From A to Z Challenge during which writers all over the world blog each day in April based on a corresponding letter of the alphabet.  These are my personal stories about living with Trigeminal Neuralgia, the most painful diagnosis known to man.)

“Oh, another trigger?  And one that is virtually the bane of every person with TN?  Wind.” – Me, last Saturday

It finally happened.  The first true day of Spring.  Temps were in the fifties, the sky was impossibly blue and the air smelled clean and full of promise of warmer days ahead.

It’s the type of day we pray for in Northern Illinois.  Yeah, it could still snow again, and probably will, but these days are the sign that winter will soon be a memory.  And for me, the first spring day has always been celebrated by my own rite of passage.  I get in my car, roll down the windows, drive fast – make that really fast – and crank Everclear on my car stereo.

As I settled in behind the wheel, energized by the bright sun, it dawned on me.  I can’t drive with the windows down any more.  The wind blowing in is enough to put me on bed rest for the next two days.  Amping up the stereo also amps up my pain.  Sunglasses are out of the question as they rest on my aching cheekbone.

I was crestfallen realizing that another of life’s little moments of joy was ripped from me by a medical condition that has so profoundly impacted every aspect of my life.

“Not today,” I thought.  “Today I’m going to be normal.”  (Okay, I’ve never quite been considered normal, I just mean normal for me.)

As I headed down my driveway, I opened both windows, hung my left arm out onto the car door, cranked my Everclear and prepared myself for a possible speeding ticket.  And I sang.  Loudly.

Fuck you, Trigeminal Neuralgia.  Fuck you, Chronic Pain.  You, too, “Suicide Disease”.   Bring it on.  I’m ready.  I’m not going to alter my life for you right now.  Not today.  Today I just want to be me again, if only for a little while.