Tag: trigeminal neuralgia

The Different “Flavours” of Trigeminal Neuralgia

Bones

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I have only had Trigeminal Neuralgia for a matter of months and yet it feels like years.  It’s interesting how pain has a way of warping your sense of time.  For me, it’s like there is no ‘before pain’, there is only the current existence with pain.

The pain has a massive impact on my life.  I do not attend university lectures as normal because the sound and the added massive excess of stimulus is too much and I can no longer wear my Bose noise cancelling headphones because they apply pressure directly to the trigeminal nerve.  I am fortunate that there is a student who records all lectures and I do my lectures that way.  I have to be careful how much I use my face when I’m in a group work setting.  I often have to cancel or reschedule my tutoring work because of it (bless them for being so patient with me).

Even though I am very early in my journey with this painful disease, I am already learning that there are many different flavours of trigeminal neuralgia.

On Sunday night I experienced what I can only define as ‘freezing burn’ throughout the entirety of the lower two branches of my trigeminal nerve – my mandible and maxilliary teeth, down the jaw directly from where the trigeminal nerve came out, along my zygomatic arch, and up the side of my nose.  The upper branch was only partly involved, trickling up the side of my brow and one little pinch at the middle of my eyebrow.

It was unresponsive to heat or cold, but responded positively when I dropped my friend off at the airport and had the aircon on hot hot HOT and so the air I was inhaling was more along the lines of 26-28 degrees rather than … 10-15.  It went back to freezing burn once I hopped out of the car and returned home.

I still fell asleep immediately.  One of the blessings of Tegretol is I fall asleep in a matter of minutes and I sleep like the dead.

Today I’m experiencing the odd sensation of … numb pressure.  It’s like my trigeminal nerve is numb but expanded somewhat, so there’s no pain, just the sensation of pressure and fullness.  It is vastly preferable to all the previous sensations my trigeminal nerve has graced me with!

Unfortunately it seems to have only lasted for a few hours, and now I have my usual bone eating sensation in my jaw and zygomatic arch and pressure ache across my brow.

My left trigeminal nerve has been relatively quiet as of late.  It was silent while my right trigeminal nerve was playing a character in Frozen – either that or it was twigging at such a low level that my right trigeminal nerve took all of my attention.

I’m recording these different sensations so I can remember what happened and when (because I have some serious memory problems these days), and also so that if someone else experiences pain like this, they know they’re not alone!

Thank You To My General Practitioner

Bones

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I have been seeing my general practitioner doctor for two years.

I first remember meeting him as a depressed and anxious wreck during winter, where he looked at me and prescribed me antidepressants immediately, with a recheck in a couple of weeks.  I revisited a few times, both of us delighted that the first SSRI was a winner, and then I didn’t see him for a bit.

I didn’t see him until after my physio suggested my overreaction to injury may be fibromyalgia.  I described my symptoms to him and he said the words I hoped to hear:  “it sounds like you have fibromyalgia”.  We tried amitrip, then he suggested we try pregabalin, as amitrip wasn’t working for me.  It was a winner.

Then I got face pain and I went straight in to see him.  He said the words I really did not hope to hear:  “it sounds like trigeminal neuralgia”, but we treated it for a possible ear infection and possible shingles in the ear (because one of his friends had it years ago and it took a very long time to figure that one out).

I have visited him every week for so long the receptionist knows my name.

We’re now going for a private MRI and a public neurologist to get this sorted as quickly as possible, because I won’t be able to continue my education next year if this pain keeps up.

I have been incredibly lucky to get an amazing doctor first up.  He has never doubted what I have to say, never told me its in my head, always done additional research to ensure he is providing optimal care, and has taken the time and effort to personalise the treatment to my peculiarities.  He has been an amazing point of support throughout all of this.

So to my general practitioner:  thank you.  You are amazing, and you are improving my quality of life more than I can say.

I Got Fat On Tegretol

Bones

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Among the other amazing side effects I am experiencing on Tegretol (carbamazepine), such as personal earthquakes, difficulty with words, and an extra helping of fatigue, I have also put on weight.

10kg of weight to be precise, in less than 5 weeks.

I’d put on weight last year, and at the start of this year when there were three birthday cakes in a week and then two the next week at work (I can’t say no to free cake, it’s a great weakness of mine).  At the start of university I was up at about 72kg.  5 weeks after starting Tegretol, I was up at 83kg.

I have ever been the human who has been able to eat whatever she wanted and maintained a figure that had occasional family friends ask if I was anorexic.  My response was always ‘you haven’t seen me at dinner, clearly’.  This neat trick began to fade away during my late twenties, along with my ability to pack away food, and I maintained a happy 58-60kg by simply eating normally.

I went on a work experience placement to a sheep farm for three weeks.  While I was there I worked from 8am to 4pm in a physically demanding job, acting as a sheep dog, walking a three hour hike through bush on a proper off-the-beaten-track style track, hauling sheep fleece around while they were shorn, and generally having the time of my life.  In those short three weeks I toned up like nothing on earth.  I slendered down, I had guns to die for, and I was eating double what I’d normally eat to maintain the appropriate energy levels.

I don’t actually need to do a lot of exercise for my metabolism to go OH OKAY and pick up speed.

Until Tegretol.

I’m stable at 83kg.  I haven’t gotten heavier.  But despite the exercise I’m now putting in, I also haven’t gotten lighter.  I haven’t changed my caloric intake in any way, I haven’t changed my eating pattern, I haven’t changed anything except added more exercise, and I am 83kg.

The weight is predominantly on my stomach.  Every bit of my front abdomen, from below my breasts down to my undies line, is extended in a bulge.  This is not a normal weight distribution, and this is not a weight distribution I am happy with.

I’ve done a bit of looking around – there was one study on people who were taking Tegretol and gained weight (I think it was averaging around 15kg) and they only lost the weight when they stopped taking Tegretol – something that is certainly not an option for me right now.  There have been one or two people on forums who have claimed to have lost weight while on Tegretol by going extremist vegan for a couple of years – also not an option for me at this point in time.  There have been suggestions of doing the ketogenic diet – another non option at this point in time, and should be done with extreme caution by someone who is on Tegretol, as carbamazepine is metabolised by the liver, and the ketogenic diet puts extreme pressure on the liver – and doing a paleo diet.

For now I will maintain my breakfasts and dinners as is and change my lunches while incorporating more exercise into my routine.  Once my waterproof sneakers arrive I’ll be able to properly jog around at the paddocks as well (yay aerobic exercise).  My goal is to be 80kg by the time I am next on surgery!

Getting Outside Is Good For The Soul

Bones

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I have spent the day at a country manor, helping out with some very (very) basic farm things, such as finding the pigs and getting them back into their pen, and bringing the older cows in for drenching.

I even drove the two aside farm vehicle thing.  That was awesome.

Even through the drizzle and the cold, there was constant bird song.  The hills rolled on and on until they met the mountains.  You could see the valley wherein a dairy farm nestled.  And it was beautiful and so restful.

This morning I sat on the front deck while my dog zoomed around the landscaped front yard and I cried.  It wasn’t a sad cry, but rather that cry you get when you unclench and let everything you’ve held dissipate.  It took me some time to finish.  When I did, I felt renewed, and my chest felt light.

It just reminded me that I need to get out into farmland more often.  Not into bush – while I like it, it’s not where I feel most relaxed, but rather into the rolling green hills akin to England’s own.  Into lifestyle blocks and retiree blocks where there aren’t many animals, and they just need a bit of mustering because they’re so used to their humans and will follow them anywhere.

While I know it is only a transient feeling, I feel more settled than I have in a long time.

I Have Bilateral Trigeminal Neuralgia

Bones

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In my right jaw, at all times, I have deep burning ache of bone being eaten away.  It isn’t, but that’s what it feels like.  I have an ache along my brow ridge.  The area around my temples incredibly sensitive, and makes putting on my glasses hazardous.

Sometimes it feels like a tooth is being pulled with limited analgesia.  On bad days, my zygomatic arch burns.  Sometimes the side of my nose gets a sharp stab.

Now on my left I have occasional flare ups of sharper pain coursing down my jawline and along my zygomatic ridge.

I am currently on 600mg pregabalin (300mg twice daily) and 600mg tegretol (200mg three times daily).  I’m maxed out on pregabalin, and only half way to max on tegretol, but I do not tolerate tegretol well and cannot go any higher.

Sitting around not making any faces or talking, the pain is tiring but manageable.  Talking causes pain.  Some eating causes pain.  Smiling and laughing causes pain.

It’s exhausting.  Explaining it again and again (often to the same people!!) is exhausting.  Being in pain is exhausting.  It’s never ending.

But the worst of it is the medication (tegretol) for treatment of the trigeminal neuralgia cause additional fatigue and aches!  Just what I need with fibromyalgia.

Well, I’ve gotten my referral to the neurologist, and we’re getting an MRI done (likely private, given how long it’s taking for my referral to be triaged!!), and then we’ll see what we can operate on.  Here’s hoping the public system doesn’t make me wait.