dealing with narcolepsy, wedding planning, a law degree and some new fitness goals…

more drugs…?

on October 23, 2012

Yesterday I met with my sleep specialist for an update and to find out if my MWT results were good enough for me to get back behind the wheel.

There is good news and bad news.  Good news is, my results from the MWT are “normal”, which means that the medication is doing its job.  The microsleep I had in the test period was not long enough to cause concern or disrupt the results.  So, that is good news.

The bad news is, the Dr asks me about my cataplexy and how it has been since starting dex.  I haven’t experienced cataplexy as often as I had before, but it does seem to be a bit more intense when it occurs.  Although I have been quite conscious about avoiding situations where I know it will occur, so less smart arses comments, less centre of attention moments and less silly joking around. (I know…!! devastating!)  The few times I have had cataplexy in the last few months I have actually been sitting down so it has been hard to gauge how strong it is.  But I would say still a bit of knee-buckling, slightly longer in duration, maybe 5 seconds, but no collapse.

He then tells me that I have to be completely cataplexy free for 6 months before I can drive.  I’m stunned.  WHY did he not mention this beforehand?  Here I am thinking, great I’m going to walk in and get the all clear and life will be a lot more normal.  No.

In my initial consultation he said we should focus on treating narcolepsy because cataplexy wasn’t a main concern for us right now.  Well, easy for you to say Doc!  You don’t get your licence taken away do you?

Irritatingly, the medication that works best for cataplexy is anti-depressants.  I was prescribed Fluoxetine (otherwise known as Prozac) when I lived in London for cataplexy.  It worked.  I didn’t experience any attacks when I was taking it.  In the end, it was not really worth me being on an anti-depressant permanently for a small little knee buckle, so I decided to stop taking it.

So now, I have to start again.  Which annoys me, more drugs in my system.  But what can I do?  I either drive or I don’t.  Which basically means we either stay here or we move.  For now, moving is not really an option for us, I have one year left of my law degree.  So I need to stick it out.  So.  I will start taking more medication this week.

Of course I understand that it is important to be safe behind the wheel.  The Dr tells me all kinds of horrible stories.  Such as this one.  I certainly don’t want to be a danger to anyone else or myself. But it is hard not to be frustrated by the situation.  I guess I am also annoyed that he didn’t just say this to me months ago when we first met.  I could be that much closer to getting my licence back.  It often feels like the medical profession are just quite happy to plod along at a snails pace.  Do they not realise that every week, every month, every delay is a delay in someone’s life?

My fiance is having his knee operation on 11 December and he won’t be able to drive for at least 6 weeks.

Aunty Em… Aunty Em….!!!

Effectively this means that the two of us will be housebound for a while, having to rely on friends and family to get around.  I’m going to bust out the pushbike and try to get around a bit on that, might help with my fitness goals too.  Although there isn’t really anything close by I can easily reach.. might end up with a bit of a sore bottom!!

I’m just frustrated with the waiting I guess.  Delay’s like this remind me that I am not well.  Collecting new medication scripts isn’t fun either!  But as always.. it could be worse!!



2 responses to “more drugs…?

  1. Debbie Y says:

    Sorry to hear your driving has been put on hold longer than you expected, that’s a real pain, but it is good that meds are working and things are getting better for you. The bike sounds like a good idea for transport but might be hard for shopping. Have you considered getting groceries home delivered (woolies and coles both do it) while you are both out of the drivers seat? It might help a little 🙂

  2. nic77e says:

    Thanks Debbie, and good idea re the groceries, I have used the home delivery before and it is a great service. I think we will spend some time at my fiance’s Mum’s house too. She has a pool so at least lazing around can be relaxing..!

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