Tag: trigeminal neuralgia

Acupuncture as an Adjunct Treatment for Trigeminal Neuralgia

Bones

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Since being diagnosed with trigeminal neuralgia, it went from bad to worse.  Even with the maximum dosage of Pregabalin and a thrice-a-day dose of Tegretol, the pain in my face was an almost constant 8-9 out of 10.  I like the following pain scale, because it also shows my mental state.

15 Pain Scales (And How To Find The Best One For You) | PainDoctor.com

Not only was I reeling from the Tegretol, but I was almost incapacitated with facial pain, which somehow is so much worse than pain in something further away.  I was taking huge quantities of medications designed to control this pain and it just wasn’t working.

So I put all my hopes on a blood vessel touching my trigeminal nerve somewhere so they could perform microvascular decompression, which is this really cool brain surgery where they stick a little sponge between the blood vessel and the trigeminal nerve and voila, around about 7 years of no pain!

The MRI showed up nothing.  Everything was fine.  Nothing was even vaguely touching the trigeminal nerve.  There was no explanation for why I had trigeminal neuralgia.

I had a complete meltdown.  I was really banking on the MRI showing something, and it didn’t.

The next day I booked in for acupuncture.  I have now had three acupuncture sessions, and I’m just about to go to my fourth.

After the first acupuncture session my pain went down to a 2-3.  I stopped taking my midday Tegretol, so I was down to twice-a-day Tegretol.  After my second acupuncture session, my pain went down to a 1-2.  I was moving that week, so every once in a while I would have a flare up to a 7.  The CBD Living Freeze (they don’t pay me for this shout out) has been a godsend for these flareups.  I roll it all over my face, fan the eucalyptus and menthol fumes away from my eyeballs (it buuuuuurns), and my face feels normal again!

I have a mild worming pain across my zygomatic arch right now, and a bit of a bone eating sensation in my jaw, but the consistent pain rarely gets above a 3.  As I said before, I am just about to go to my fourth acupuncture session, and once my nerves have settled down from that I shall drop my Tegretol down to once a day.

My goal is to completely come off Tegretol and regain my brain and my waistline!

Three Days Post Acupuncture

Bones

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Last weekend I had been suffering greatly, and even that is an understatement.  All three branches of my trigeminal nerve on my right face were aching constantly.  My nose was set to a permanent state of burning cold.  My zygomatic arch and brow just ached so much my eyelids were significantly more closed than usual.  There’s a continuation of the first branch that I didn’t know about until it shot up from my eyebrow straight up my forehead.  Ouch, right?

Then there was my third branch, the one that goes down my mandible.  The usual hole was being eaten into my jaw, and then I had burning aches in my chin, up my jaw, the works.

The pre-branched part of my trigeminal nerve wasn’t letting the branches one up it either, it was screaming pain, making it very difficult to put my glasses on, and woe betide me should anything graze the side of my face!

Because of all this, my fibromyalgia was up.  I was incredibly stiff in the morning, and very painful to move around, all the way up until the early afternoon.  Everything was giving me hell.

I had acupuncture.

For the rest of that day, my right trigeminal nerve was deeply confused, sending waves of peace, followed by crawling burning ache, then stabbing pain.  But I was getting peace.  I myself was pretty out of it so I spent the day doing not much at all and went to sleep early.

Day one after acupuncture was bliss.  My third branch wasn’t doing anything.  This is the one that’s been eating away my jaw almost since my trigeminal neuralgia kicked up a notch in June.  It was gone.  My first branch across my brow ridge was aching, but nothing like before.  I could actually think again!  I had no shooting pains, nothing.

Day two after acupuncture was also pretty rad.  A little bit more pain was coming through, but not much.  The pre-branching trigeminal nerve was aching a bit, my brow was still aching, but that was about it.

Day three after acupuncture things are sadly getting back to almost normal.  The pre-branching trigeminal nerve is hurting a lot, my brow is aching up to the middle of it, my jaw is being eaten away, and my nose is starting to turn to ice.  I don’t think it’s as bad as it was before, pain wise, but it’s still debilitating enough that I’m just wanting to go back to sleep (instead I’m just about to quaff my third coffee in 1.5 hours – STUDY STOPS FOR NO ONE).

Still, this was a fantastic experiment.  It shows to me that acupuncture can have a serious positive affect on my trigeminal neuralgia.  I’ll report all of this to my acupuncturist on Monday when I see him next and we shall try something else.  We’re just going to keep going to see what sticks!

Adding In Acupuncture

Bones

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After the meltdown of finding out there was nothing wrong with my brain or trigeminal nerve, I decided to get to throwing everything at it to find out what sticks.  One of those things I’m throwing at it is my old physio, who does laser and ultrasound therapy for injuries, as well as acupuncture and chiropractic work.  He’s an all rounder, and he’s very effective.

When I first visited him, he unlocked my hips – unfortunately my muscles weren’t used to my hips being able to swing, and so I was walking into things and clipping the corners of desks and the like, but my hips were working like they were supposed to again!  While treating me for an injury he would also do minor adjustments to my back, each of them having huge and lasting effects.  When I’ve been to him during major fibromyalgia flare ups, a few adjustments have me feeling better.  Not completely better, but just better enough that I can get through the day.

Today was my first acupuncture session.  Now please keep in mind that I am viscerally terrified of needles.  I tend to faint when I’m needled for any reason.

I lay on my back and waited as he tore open the package.  He was very swift in placing the needles, almost no time between placing the guiding mount and pushing in the needle.  He placed four on each side, one over the trigeminal nerve, one up the scalp, one behind the jaw, and one just in front of the ear.  Tiny pinpricks of anxiety.

I’m not verbose enough to describe how I lay there and panicked as he placed them one by one, but suffice to say, I did.  A number of times he asked me if I was okay.  I had to explain that yes, I’m fine, I’m just panicking because there’s needles involved.  Once they were in and I was accustomed to the sensation, I was able to sort myself out and relax.

Since the treatment I have been attempting to catalogue the difference in trigeminal pain.  Until now it’s been less continuous.  I’ve had more sharp stabbings rather than slow burning aches, although they’re still there.  The sensation of having one particular tooth pulled without analgesia is still there and just as intense.  It all feels just a bit different.  I’m not sure if that different is better or worse than before, and to be honest unless I was experiencing them both at the same time I wouldn’t be able to tell you which was better or worse.  It’s just different.

I’m also really drowsy, which is normal.  I usually have a bit of a shit rest of the day, but the next day brings about improvements.  I’m hoping that’s the case here!  And even if not, I’m there again next week.  I’ll just keep throwing shit at it to see what sticks!

There Is Nothing Wrong With Me (Except There Is)

Bones

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I went in last week for a private MRI.  It was a surprisingly relaxing experience – I spent my time cataloguing what all of the noises sounded like.  Most of them sounded like a really broken hard drive trying to work.  Some noises were like overbalanced washing machines.  Some sounded like the old 90s printers going nuts printing.

I got the report from my MRI today.  Everything is normal.  The brain is normal.  The nerve is normal.  There are no impingements, demyelination, nothing.  There is no physical reason for my trigeminal nerve to be permanently signalling pain.

I am devastated.  In a few days I’ll be relieved it wasn’t other things (like multiple sclerosis or a tumour), but for now I am distraught at the fact that they can’t fix this.  There is no cure.  They can’t make this pain go away.

This is my life.  Having a jaw that feels it’s being eaten away, a temple that aches and burns, a nose that feels like ice, and a brow and forehead that throbs.

Today I will be sad.  Tomorrow I will be angry and I will not let this be my life, come hell or high water.  But today I will be sad and accept where I am, which is in a lot of pain with no physical evidence to show for it.

This Is My Life Currently

Bones

christopher-windus-ys_PVhkEC6c-unsplashThe alarm goes off.  I groan, hit snooze, and roll over to steal some warmth from my amazing human who also doubles as a walking space heater.  The snooze alarm goes off and I whinge some more and convince myself I’m only going in for a little cuddle.  Several minutes later I get a nudge awake and I roll myself out of bed.  I stand up.

And promptly tilt over into the dresser.

That’s fine, there’s only a few centimetres between where I stand and the dresser, I’m not hurt in the least.  I stand myself back upright and lean on the bed as I grab my pants, put them on carefully one leg at a time (I’m also deeply inflexible first thing in the morning, so this is sometimes quite difficult), put my jumper and slippers on, and totter out.

My right eye is just a blur, like I’m not wearing my glasses.  My left eye works fine.

I stumble and list several more times on my way to the kitchen, but I manage to catch myself each time, usually with my feet, sometimes with my hands on a wall.  The cats yell at me to feed them.  Kettle goes on first, dog loses her shit because I’m up and that means breakfast, and the cats continue to yell at me.  They all have me whipped.

I continue to teeter my way around the house, feeding the various beasts, making my coffee, my amazing human’s coffee, my breakfast, until at last I can sit down and not expend additional energy catching myself as I start to tip sideways.  I subconsciously plan my routes to ensure I have either something structurally sound I can catch myself on, or something soft I can fall on, as much as possible.  I’m glad my floofy creature (cat, she rules our lives, and she knows it and loves it) is more interested in floofing in front of me – tail up and elegantly tipped to one side, glancing over her shoulder as she chirrups to make sure I’m following her – rather than doing a surprise floof directly in front of / under / between my feet as I’m walking.

By the time I’m seated with my breakfast and coffee my right eye is back to normal, if feeling uncomfortable (I’ve been to the optometrist who says it’s all beautiful and fine), and I spend my mornings relaxing and waiting for my body to stabilise a bit more.

Throughout all of this my jaw burns.  Well, not so much burns, as feels like it’s being eaten away.  It’s a diffuse ache with no distinct boundaries but a tapering off around a central pain.  Sometimes it’ll crawl down my mandible and into my chin.  Sometimes I’ll have flashes of sharp pain across the roots of my maxillary teeth.  More often than not I’ll have a frozen burning patch along the side of my nose.

I’ll browse through Facebook on my laptop.  My fingers will lightly spasm as I go through, so I have to make sure the mouse is off to the side of the screen so I don’t accidentally click on something.

After a little while I’ll get up, wind my way to a shower, and get on with my day.  I will have difficulty recalling things I did moments ago.  I will stumble over words.  My brain will supply me with an alternate word for the one I’m wanting, and I will have to logically work my way through an number of other words before I get to the correct one.  I will sometimes have intention tremors.

If I’m lucky, the wobbliness will be done by 10am.  Other times it lasts all day, and I will have to rely on my cane for balance.

I don’t know how much of this is the Tegretol or if this is an increasing severity of whatever is causing my trigeminal neuralgia.  Hopefully I will find out soon!