Final Tests for Narcolepsy

The run out of 2010, it seems for me is heavily focused on my health situation and “finding out what’s wrong”. This week I had the definitive test for Narcolepsy called the Multiple Sleep Latency Test and had confirmation of my sleep scores from way back in July.

In the MSLT, I’m put to sleep (naturally) several times in the daytime in an isolated hospital bedroom and a clock is started to see how long it takes me to enter any stage of sleep. I’m all wired up again to EEG’s with superglue in my hair. This test determines if I’m tired because of physical exhustion, or if I genuinely have a level of sleepiness that exceeds the normal level of tiredness that we all expereince from time to time. The MSLT also is more scientific and trustworthy than the Epworth Sleepiness Scale.

My Epworth is in the 20′s and it started off being as good as 12! You probbaly wouldn’t score this high even if the kids have been keeping you awake at night.

I’m so nervous about the results of the MSLT and the Polysom, because if the tests are inconclusive, and I don’t think they will be, but if they are, we are still left with a puzzle as to why my EDS is so severe. There is another possible diagnosis of Idiopathic Hypersomnia but letters to my GP have gone from stating “possible narcolepsy” to “probable”. I have a feeling these tests are to also figure out what treatment and management to follow, being that it is a foregone conclusion that I have a sleep disorder. Do we try stimulents, sedatives or both?

Napping is a legitimate but unacceptable coping mechanism
I’m not going to get away from having to nap in the day on occasions, which will cause significant problems for me and for other people too, it already has. My hope is that I have some backing to have the confidence to assert that this is what my medical condition is and back up on a factual basis why I have to do something that is socially unnaceptable and anti-social; SLEEP!

I still have to go to court to prove my illness to the DWP, so that is my next big stress, but I feel everything is falling into place now and I’m proud of myself that I’ve managed to do all this so quickly. It could in some cases take decades to diagnose Narcolepsy when Cataplexy is absent, so 2 years is not bad at all. And it all started Christmas 2008!

NB : Narcolepsy isn’t just about collapsing and falling asleep, in fact a third of all Narcolepsy cases do not involve this collapsing called Cataplexy. The main symptom I have is truely horrific Excessive Daytime Sleepiness and this can be a symptom of Hypothyroidisim too. I can fall asleep while eating and when I’m driving I can appear to be awake but I’m on the verge of a sleep cycle and fighting so hard to stay awake. Yet I find it so very difficult to feel sleepy at night and again this sleep fragmentation is a feature of Narcolepsy, which is a fault in the sleep/wake centre of the brain.

Posted on Friday, December 3rd, 2010

Comments

1. Paula Atkinson says:

   January 5, 2011 at 12:46

   Good luck with this.

   I am having one tomorrow. Polysomnogram tomorrow night, MSLT on Friday. I WORK for the DWP. I just had a hedgehog come out of my coffee cup in a meeting :(
2. Lee Jordan says:

   January 10, 2011 at 11:58

   Hey Paula,

   How did the polysomn go and when are you expecting results? Hedgehogs must be hibernating in coffee cups these days :)

   DWP; I don’t dislike the people that work there, just the system that gives us all so much pain, my ESA tribunal is coming up soon :(