Queen of Sleep

Living with narcolepsy: a personal journey

Spring and Sunshine is here FINALLY!

with one comment

It makes such a huge difference to my overall condition. All of a sudden I have more energy and motivation. I know this is true for everyone but for me it is like night and day. I wish spring and summer ruled all seasons. It would be easier then to live with narcolepsy.

2-3 weeks ago I saw my specialist or some people call them sleep doctors. He heard that I was still struggling to keep awake and my nighttime sleep was appalling. He suggested a mild dose of Dexadrine. I went quiet. He said I looked at him as if he came from another planet. So many questions were circulating in my head. I knew I was lucky not to have had to take amphetamines because i was diagnosed so late in life (delayed diagnosis of 16 years) In previous posts I have described my relationship with Modafinil.  30 years of amphetamines and your brain goes kaput. I did not want to take that risk. Still he said that the dose would be low and it would help me until my sodium oxybate application would get approved (hopefully). he also said that it would work in my favour if the panel saw evidence that I had tried dex. It’s a crazy world we live in, everything has to be justified, even if it’s mad. I could say yes and then not take it. That would be an option, obviously, but I was under so much stress and overexhaustion that I replied: If you think it is a good idea, I will try it. I trust my doctor – he is a good man and very knowledgeable.

So I started taking the medication, and in combination with the increased light there was an immediate improvement. My friends said that I apparently became more alert. I found myself sleeping slightly more soundly at night too. At this time of year my condition improves naturally so I is difficult for me to say how much better I am on the medication. I will have to wait and see.

I felt more energetic and started to spend more time with my friends, go out more. Even went to a birthday party. All of a sudden I thought I had become superwoman (might be because one of the side effects are a feeling of being high). So I started becoming overly active and subsequently crashed badly. It is so difficult to tell the difference between when my body is tired and when it’s not when I take medication. I am so super sensitive that even small amounts of amphetamine affects me and in the same way small amounts of stress affects me badly.

I have also increased the Clomipramine I am taking for cataplexy. Keeping a quiet lifestyle, minimising stress keeps my cataplexy at the moment at bay. If I started working now It would all come back quickly. I am getting bored of not having a regular job so I do  2  hours a week of volunteering. I can’t wait for the Sodium oxybate –  I have a feeling it will help me immensely. I will start to work part-time again and then hopefully work my way up to a full-time job in the future. I can only hope. I am also so bored of sleeping all the time. So bored of having to sleep all the time. It feels like all the time. So bored of having to organise my life around sleep.  My day is shorter than other people’s, it feels as if my life is shorter than others and it makes me angry and sad all at the same time.

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Written by Queen of Sleep

April 29, 2010 at 1:22 pm

One Response

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  1. Hello,
    I have narcolepsy as well. I’m on xyrem currently, and I thought it might be helpful for you to know that you may not need insurance approval to be able to fill your Rx. SDS Pharmacy will apply this “coupon” they have if your insurance doesn’t cover it, or if they don’t cover enough of it, which brings the monthly cost down to $75. I definitely don’t know all the details, and there have been a couple months when for some reason I didn’t get it, but it’s worth looking into.

    naptime

    July 19, 2012 at 5:50 pm


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