Tag: trigeminal neuralgia

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.

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?

Fatigue and Lethargy

Bones

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So as you probably all know by now (or, if you’re a transient blog surfer, you may not know – and also, hi!) I have fibromyalgia.  I am also being treated for trigeminal neuralgia.  Jury’s out on what’s causing that, I’ve got a referral so let’s see where that takes us.

Fibromyalgia unfortunately involves chronic fatigue.  Fatigue is defined as “extreme tiredness resulting from mental or physical exertion or illness” (thanks google dictionary), but for some reason I find that word too … lively.  It’s the ‘t’ and the shortness of the word.

I actually prefer the word lethargic, and it’s defined as “a lack of energy and enthusiasm”.  While it’s an accurate description, I do indeed have a lack of energy, it doesn’t take into account the severity of that lack.  But, still, I like that word, because you can elongate the ‘e’ and the ‘a’ and it becomes a long, slow, exhausted exhale of a word, bringing to mind a sloth on a branch moving in that incredibly slow way of theirs.  It sounds how I feel, although fatigue describes it.

I was going to do things today.  I got up, I had my cuppa coffee, I took my meds (I’ve doubled my morning tegretol, as the pain from my trigeminal nerve is increasing), and I had my brekkie.  I lay around for a bit, read a bit, and then realised I was having difficulty focusing on the words.  My eyelids drooped, so I sat up and started sorting out a mindless but fun computer game to play (shield bashy bashy, sword smashy smashy).  I was just starting up when everything slowed down.  My arms weighed down with lead, my shoulders dropped, and the fatigue hit me in the face like a two handed hammer.  Oof.  It’s hard work just typing this.

I’d been improving so much with my fibromyalgia and my balancing act that I haven’t felt like this in a wee while.  Anxious and depressed and like I don’t want to do anything, sure, but not this whole body-weight drained fatigue.  I actually suspect it’s a side effect of the tegretol – I’ve found myself less able to do things lately.  Or it could be the pain from the trigeminal neuralgia fatiguing me in a shorter length of time to what I’m used to.

Regardless, I’m now going to put my feet up, put something on Netflix, and doze for the rest of the day.  When the fatigue hits, you just gotta rest.

I don’t want the life I lead … or the life I’m heading into

Bones

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I sat on a foot stool in Spotlight, exhausted and in a not inconsiderable amount of pain, waiting for my mother to extricate herself from the yarn department.  I had bought two balls of lovely soft cotton and was contemplating what to do with them when my thoughts moved to when I would be able to do anything with them.

You see I have this week off, then a week of work experience, then I’m back at uni, which just sort of continues until December of next year as we go straight from this year into our final year, do not pass go, do not collect $100.  I have very limited time to do things that I enjoy, and usually by the time I get to them, I’m too exhausted to do them.  I don’t like this life that I lead.

But I’m sucking it up and doing it because it will get me into a career I am infinitely passionate about and absolutely what I should be doing with my life.  Unfortunately it’s also a career where overtime and overwork is just par for the course and rather expected of you.  Especially in our final year of university.  We’re not ’employees’, so there is no legislation preventing them from requiring us to be in clinic from 7am to 7pm, or later, or from going straight from that to an overnight shift.

I really don’t like the life I’m headed into.

But like all things, there’s the ability to mould that life into something you want.  In my case, being stern about in clinic hours and my own requirements, and ensuring that I will not be failed on the basis of only being able to be in clinic for reasonable hours.  And after university is finished, setting up alternative income streams (I almost feel gross saying those three words, they sound so … smarmy and corporatey) so that I can work part time, and find a place that will allow me to work part time.

It was a sad realisation, though, in that shop.  It’s the career I’ve worked most of my life towards, and my own body is making it so much more difficult than it needs to be.  My body is preventing me from doing what I want to do to the fullness I want to do it, and I’ve had to seriously adjust what I want to do to compensate that.

It seriously sucks.

So I’m going to allow myself to be a sad sack of potatoes about it for a little while, then grab myself a cuppa tea and start plotting an easier future.  My life won’t give me exactly what I want, so I will make a suitable compromise – one where I can still pursue the career I want, without exhausting myself to the point where I can’t do the other things I want to do.

I am doing good enough

Bones

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I find this notion of “I am doing good enough” incredibly difficult to define and accept.  As someone who has had chronic fatigue and chronic pain for over half her life, I don’t know what it’s like to not have it.  So, when I look at everyone else zooming around, doing so much, having all this energy, I think to myself how do they do that? why can’t I?  I still can’t tell myself I have a chronic illness that reduces my ability to do everything.  Not I have a chronic illness that stops me from doing things, because I am as stubborn as a mule and will chop my own nose off to spite my face, and if someone, even myself, tells me I cannot do a thing, damnit I will do the thing.

I still can’t tell myself it’s okay, I am doing as much as I can, and I am still doing well.  This is because I am comparing my achievements to able-bodied people.  Not only am I comparing my achievements to able-bodied people, but I am in a course where my achievements are compared to able-bodied people.

I am in one of the most difficult and gruelling degrees in the world, one that is hard for even able bodied people to undertake.  I am allowed to be doing not as well as them.

But I don’t see that.  I don’t think that.  I’ve gone my entire life thinking, and being told, that I’m normal, that I’m just lazy, that I just need to try harder, work harder, do more.  It’s a mentality I’m struggling to shift.

I suspect it’s a mentality many people with chronic illnesses and/or disabilities have difficulty with.

Sometimes I manage to remind myself.  Sometimes I even manage to feel it in my heart, instead of just in my head, but that goes away with so much as a stiff breeze or an assignment.  I try to keep up with my more able-bodied class-mates.  Sometimes I succeed.  Sometimes I struggle.

But at the end of the day, I am passing.  I would like to be getting ‘average’ marks, and each time I think that, I tell myself I am doing good enough.