Month: July 2019

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.

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.