Friday, March 30, 2012

ok let's review

Hello friends, just wanted to give you a pain update. Just because it's pretty much all I can think about. Well, that and sleep. This medicine doesn't seem to do much besides make me gain weight and need approximately oh, 15 or so hrs of sleep a day. Awesome.

Here you go though, the complete status report:
(All of this is one-sided, left side of my face)

1. Constant:
- aching burning pain along the cheekbone pretty much straight across the front of my face. Usually above cheekbone, or along upper edge, sometimes right under the cheekbone joins the party, too. Feels sort of like a dentist shot a hyperdermic needle through my face and . . . left it there. Forever.

2. Frequently, comes and goes:
- sharp needle-like pain up along the side of my nose. Sometimes it sticks around and aches for awhile too.
- aching pain around my eye orbit, eyelids, and above eyebrow, sometimes my eyeball seems to hurt too
- sharp ice-pick poking pain deep in my ear

3. Occasionally:
- ache down along jaw
- teeth and gums aching, top and bottom
- tiny needle pokes pain along my upper lip, kind of like stroking down a moustache, in that area
- pinching pain in one spot on the edge of my outer ear

4. Only fleetingly:
- sometimes tingling in that same spot on my ear, or a cold sensation
- tingling along the edge of my nostril
- tingling along one portion of my tongue
- strange taste sensation in that same part of tongue
- weird sensation on roof of mouth
- cold sensations on lips

Exercise, exertion, too much movement of my head or face all exacerbate the pain (talking, smiling, squinting).
Noise, chaos and stress make it hard for me to cope with the pain - but may not actually increase the pain level.
Lying down and sleeping tend to help. Or if I'm asleep I don't really notice the pain, so that's kind of nice I suppose.
The pain ebbs and flows in severity, but remains there to some extent constantly. All day long. Every single day.
I'm up to 400 mg Lyrica, which is an anti-convulsant, so it's supposed to calm down the errant trigeminal nerve that is freaking out and causing pain - but it's not helping. Dr prescribed Lortab for when the pain is making me climb the walls, but it doesn't do a thing at all. OTC pain meds are worthless for nerve pain.
And I think I am also getting occasional regular headaches as well as occasional one-sided migraine-ish eye headaches that make me sensitive to light and nauseous.


I think that's everything.

I have another appt with the neurologist next week. From my reading and research (including Striking Back, the Trigeminal Neuralgia and Facial Pain Handbook), I am fairly certain my condition would be called Atypical or Type 2 Trigeminal Neuralgia. Atypical because it is constant aching pain, and not the shooting, zapping episodes that are typical of TN Type 1. And if that's the case (and it almost certainly is, in my opinion), then it is a chronic condition, tends to get worse over time, usually managed by some combination of anticonvulsants.

There's some more I can write about the theories of what causes it and other treatment options (including major procedures, like surgically opening the skull to get to the nerve root), and how this is all affecting me mentally and emotionally (huh what? me, affected by this?! ha ha ha), but I think . . . probably most of you had had enough for now.;)
(Too much maybe?? perhaps?)

Thanks for reading.
Thanks for commenting.
Thanks for sticking with me through this really stinky time.
And yeah, thanks for everything.:)


Ashley Case said...

When I got nerve pain in my upper back and shooting down my right arm (years ago) I thought it couldn't get much worse than that... And then I got CHRONIC nerve pain in my SI joints and shooting down my legs. It's just so much worse than anything else I've ever experienced, including labor (which is painful, but has an end to it and a beautiful payoff for all that pain.) Chronic pain is incomprehensible unless you've been there. There are experiences I can't talk about to this day without crying.

I'm sorry you're going through this. I'm praying for you.

KGC said...

Wow! I wish you all the best. I'm sorry you have to go through all this. If you ever need to vent, cry, scream or just an ear to listen, I'm here. It's not easy being in constant pain, but you're not alone. I completely understand, & have felt almost all you're going through. It seems like it will never end, but sometime it will. I just wish I lived closer to you!!

<3 & *hugs*
K8 =]

Tricia F said...

oh Kristen, I'm so sorry. I can't even imagine how uncomfortable and miserable that must be. Praying with you!

Amy said...

Hugs and prayers to you. I'm so sorry that you are going through this.

Ellie said...

So sorry you are going through this. It sounds horrible! My sil was having similar symptoms a couple years ago and after a year or testing it turned out to be from a cracked tooth. Hope you can get some answers and relief soon!

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