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.

I Don’t Want Your Pity

Bones

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I’m back at university, which means interacting with other people, group work, class-wide work, and all that jaz.  This of course means explaining to a new group of people that my medications can make it difficult for me to talk at times – I’ll forget words, stumble over others, supplement one word for another without noticing at the time (I usually notice a few seconds later that I’ve done it), and the like.

And now explaining why I have to look like a robot and have no facial expression because I have trigeminal neuralgia throughout all three trigeminal branches – optic, maxillary and mandibulary branches.

Why I’m only coming to compulsory lectures / tutorials / practicals for a little while.

I am in an amazing group for my group work.  I am in a group that love each other dearly, who are open and inclusive, and who are genuine rays of sunshine.  I know their looks and their consideration come from a place of genuine care, but I don’t want it.

I don’t want it because it means they hear what I’m saying, and they think that’s awful, and I can’t allow myself to think that, because if I do I will break.  Because this is my normal, this is my life, it can’t be awful, and I can’t think that it is.  I can’t let myself think that my life is awful.

Because once I go down that road I meet nothing but expansive depression, and I don’t have the time for that shit.  I have a degree to smash.

I also don’t want the pity from my friends.  Or suggestions that I should take a semester off.  Not when I’m actually doing better, not when I’m improving day by day, not when they don’t see that because they don’t interact with me day by day.  While I appreciate it’s from a place of concern, I also found it rude and overbearing.

Except I also feel guilty for finding it rude and overbearing.  I feel guilty for asking her not to mention it again, for asking her to trust me when I say I’ve got this.

Managing disability surrounded by able bodied people is a challenge.  Dealing with their perceptions, their opinions, and their ignorance is, at times, completely beyond me.

So instead I whinge about it in a blog.  Hey, it gets it out there, and it makes me feel better, and hopefully someone else will read this and know they are not alone in what they are feeling or what they are struggling with.

I don’t know the answer to these challenges, I just know that I have to work through these feelings to understand what it is I don’t like and come out the other side.

A Change in Medicine – Doubling Pregabalin

Bones

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During my visit to my doctor yesterday, he noted that I was also on Pregabalin, which reduces nerve pain … like trigeminal neuralgia.  As I’m having some fairly intense side effects from carbamazepine, he suggested we double the dose of pregabalin, which was relatively well tolerated, and subsequently reduce the dose of carbamazepine to one that is sufficient to keep the pain under relative control, but also reduces the side effects from it.

I began my doubled dose of pregabalin last night (300mg twice daily).  This morning I feel dizzy as anything but totally awesome.  I’m just lying here on the couch with my legs up on the back of the couch (a position I find most comfortable) and I am incredibly dizzy and also feeling quite euphoric.  I am definitely rambling.

I usually experience some fairly intense dizziness with pregabalin during the first 1-3 days, as well as some euphoria, and a good mood that continues on.  I know what to expect with it.  My hope is that the doubled pregabalin will allow me to reduce the tegretol from 400mg twice daily down to 200mg three times daily, or even lower!

But first, get through the dizziness and make sure the pregabalin is taking off that last bit of pain.  Then I can start adjusting.

Nightmares – A Small Setback

Bones

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I’ve been having dreams, nightmares, whatever you want to call it, I’ve been having it.  It invariably involves one or the other of my past abusers.

My usual nightmare involves It, the narcissist I was with for the longest, the one who caused the most damage, and my PTSD.  It typically involves him returning, and just assuming that the relationship is back on, and I fake it.  I fake it to hide my relationship with my amazing human being – which is basically what I’m doing now, minus the being in a relationship with him part, and more with him being on the other side of the world (THANK FUCK).

My first abuser was in my dream last night.  Then, later on in the dream, I did what I have always dreaded doing.  I said Its name instead of my amazing human being’s name.

Sometimes, in the awake world, It’s name will be on the tip of my tongue instead of my amazing human’s name.  I don’t speak when that happens.  I have almost been away from him for the same length of time as I was with him, but some scars take longer to heal than others.

All of this has … done something to me.  I feel flat and anxious at the same time.  I don’t want to do anything.  I want to bundle up in a blanket and drink tea and watch Forensic Files.

And unfortunately I can’t today.  Or at least not all day.  I have adulting I must do before I can be an amorphous blob.

Doubled Up on Tegretol

Bones

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Adjusting to my first dose of tegretol was hard – read all about it here.  My trigeminal neuralgia has become too much to be contained on the 400mg dose (200mg twice daily), and so I attempted to increase only the morning dose, so effectively taking 600mg (400mg in the morning, 200mg in the evening).

This did not work.  I knew by day two that it would not work, when I experienced the delightful feeling of having a tooth pulled that evening.  It was not pleasant.

I have now fully doubled my dose of tegretol to 800mg daily – 400mg twice daily.  I am once again going through the adjustment symptoms, fortunately without the intense itching (so far!).  I have lost my balance.  I am hypersensitive to noise and touch.  My brain doesn’t quite operate right – I lose words with monotonous regularity, forget what I’ve done just moments before, and I can space out and stare at nothing real well.  I seem to have lost my grasp on time, as well, not that I had much of a grasp on it in the first instance.

Fortunately this amount of tegretol has had a considerable (positive) impact on my pain levels.  I’m not permanently at the dentist, hoorah!  I still have some aches around the angle of my jaw, across my zygomatic ridge, and from my temple up along my eyebrow.  That one is the worst at the moment, from my temple up along my eyebrow, and there’s not really much I can do about it other than use high value distractions.

The plus side is my doctor is referring me to a neurologist, hopefully the wait list isn’t tremendously long and I can get in promptly.  I have another appointment with him on Monday to see how we’re going with the tegretol and to discuss everything.  He’s quite concerned that there’s something impacting more than one cranial nerve, so every visit so far he’s checked my field of view and my retinas.  He never really comments on what he finds.  I’ll try to remember to ask next time.

Uni starts up again on Monday, but I’ve made the executive decision to do as much as I can from home while I’m sorting out this pain.  I am on surgery this week, so I’m going to try a novel idea of getting those adhesive heat packs you can get for period cramps and sticking it on my face.  I may have to create a barrier between my skin and the heat pack, so I’ll chat to the people at the pharmacy about that.  You get incredibly inventive when you have to be in sterile gowns for 5 hours in a cold room.  (I wear polyprops AND leggings under my scrub pants to stay warm!)

Oh yes, another side effect of the tegretol is that I lose my filter and I tend to blither.  Can you tell?