Thursday, March 15, 2018

It wasn't a migraine: trigeminal neuralgia

On a very cold day in January, I got a migraine.  
So I did what I'd always done before, and took my trusty emergency medication. 

But the medicine didn't work.
And the pain didn't stop.

The pain.

In fact, over the next couple of days, the pain worsened.
And then worsened still. . . .  
So I called my neurologist, and he told me to come in right away.

Then he says I never had migraines to begin with.
All these years -- no migraines....
No wonder my migraine treatments had never worked.
We've been treating the wrong disorder!

All this time.

So about a month ago, I was diagnosed with a rare neurological disorder:
bilateral trigeminal neuralgia. . .

Trigeminal neuralgia (TN) is an incredibly painful chronic condition affecting the trigeminal nerve.  It's characterized by stabbing, burning, throbbing, searing pain and electric shocks in the face, temple, mouth. . . anywhere the branches of the trigeminal nerve reach. . . .

yep, even in the gums, teeth, eyes, nose....

These pain attacks can last for a few seconds or minutes, but some types of attacks can last hours, days, or longer.

Since that blustery day in January, something (probably the polar vortex that blew in that morning) triggered my left ophthalmic nerve, the upper branch of the trigeminal nerve, and it went haywire.  I had an almost constant dull ache in my temple, with up to 20 pain attacks a day -- like an ice pick behind my eye, and a stabbing knife in my temple.  (This is atypical type - TN2.)

This still happens daily.  The past few days have been mild, with just a few pain attacks / stabs.  However, I do still have bad days -- pain all day long-- here and there.  I never know when the pain will strike, or to what degree.

cold, wind, and weather shifts/fronts are BIG pain triggers for me

And over the past three years, I would occasionally have facial flare ups of the intense shocking, swelling, stabbing, rip-your-face-off  kind of pain. (These are much less frequent, thank God.) They were misdiagnosed by other doctors as sinus infections, and treated with antibiotics and allergy medication that, of course, didn't help. (This is typical/classical type - TN1.)

I had no idea that this was TN all along.

What's next. . . .?

TN is progressive and incurable, but there are treatment options.  I'm currently at the medication stage.  Also, my MRI last month ruled out MS and tumors, so that's good news!

Nolan's cairn at McKittrick Canyon

I try to avoid and limit my triggers as best as I can, and prepare myself for the big ones like weather shifts and cold fronts -- my WORST triggers.  I've also completely revamped my diet, avoid all sugar, and follow a healthy lower carb diet.  It seems to help reduce the facial flare ups quite a bit.

And now. . . .

I am learning to ask for help. 
My family has been incredible, and they are taking such good care of my needs.  I had no idea what they were capable of. . .  I should have let go a lot sooner.  I am so grateful for them. Beyond words.

And I'm taking each day, each hour, as it comes. 
Because I never know if I'm going to have an attack, or if I'll be pain-free.  I have to appreciate and evaluate each moment I have.

I'm also listening to my body more, doing only what I can, and giving it what it needs.
I'm tired.  Pain is exhausting.  Medications are draining.  I move slowly most of the time, and I don't have much energy.  I feel that it's coming back, slowly, but that's probably just because I'm fueled by lots of coffee.  ;) 

Seriously though. I feel that I'm getting a little stronger every day since that January attack, so hopefully, my energy will return with it, too.

We recently went hiking in the mountains and let me tell you -- that was some AMAZING medicine.  While I had numerous pain attacks while hiking, and I was really slow (plus I had to keep track of little Henry,) I didn't even care.  The mountains, the trees, the streams, the rocks. . . just what I needed. 
But mostly, I needed this. . . .

So this disorder has indeed slowed me down.
A lot.
I'm used to being independent.
Go, go, go. 
Creating, making, teaching, sewing, cooking, and, and, and. . . .
But I'm adjusting, learning, leaning.
Readjusting again.
I believe we'll figure this out.

I also need your help. . . .

I would appreciate your patience. . .  my response time in replying to messages, texts, custom order requests, and the like is a bit slow.  My Etsy shop is still open, but orders will most likely take longer to fulfill.  I probably won't answer the phone (it's excruciating) but I'll respond to texts as soon as I can. 
I appreciate your understanding.

Please keep us in your prayers.

I'll chat with you soon. :)


  1. Continued sorry your going thru this. Hugs !

    1. Your prayers and encouragement have meant so much to me, sweet friend. Thank you and God bless you, Jamie.

  2. Very sorry to hear this my dear... sending love, prayers and warm weather from Hawaii to fight your cold fronts! ~xoxo Puamelia

    1. Thank you so much for your warm thoughts, kind words, and especially your prayers, my lovely friend! It's so nice to hear from you. (I still have and use the pincushions you made me every time I sew!)

  3. I was looking thru pinterest and pulled up your site. I too have TN but am currently in remission. I understand your pain. Like a cattle prod to the head. I hope you are doing better.

    1. I'm so glad you're in remission... I completely understand the cattle prod analogy. Prayers for your continued health! Thanks for dropping by. :)

  4. A friend suffered from "migraines" for years, then had some dental work done. Turned out to be the source of the pain! Go see a good dentist!

    1. That's a good point, and I've heard this to be true from others, as well! But I've heard horror stories for the opposite as, well -- a bad dentist causing all the issues! I've been so many times, I don't know if that was the cause or not. I just need to find a really good one. Thanks for dropping by! Have a great day. :)

  5. Prayers for you. hope things get better.


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