Queen of Sleep

Living with narcolepsy: a personal journey

Visit at the Nutritional Therapy Clinic

with 2 comments

Just a quick reminder: I was diagnosed in 1997 after 16 years of living with narcolepsy. My health was rock bottom.

I was prescribed Modafinil which did not agree with my sensitive physique – it made it worse. In the past I also relied heavily on different types of sugar to manage my energy levels. A terrible way to live – mood swings all over the place.

In previous blogs I have written that I might be wheat intolerant – the therapist said that she thinks that I am more likely to be dairy intolerant and because of my issues I can’t digest wheat properly.

I am have been put on a wheat, dairy and sugar-free diet – nicotine, alcohol is obviously included in there. My perk will be coffee but only to be drunk after meals never first thing or on its own.

Samples of stools will be sent to the US to test for ‘everything’ because these tests are not available in the UK – where medicine is reactive rather than preventative (my words not the therapists). It is expensive but it is worth it.

As I am a sugar junkie, however, not by choice the first issue to address was how to balance my blood sugar. Avoid all sugar – even dried fruit. Agave and Perfect Sweet (Waitrose) was the only substitute allowed. As supplement called Bioglycozyme forte was recommended to help with this process. I am dreading the withdrawal symptoms.

The next supplement recommended was Fast and be Clear to help clear toxins residing in the liver – she said that my liver is in pretty good shape there were just a few signs of heavy toxic load. I am not surprised because anyone who takes strong medications know to take a respite weekend or week now and again. Any assistance is good for the liver.

I was also recommended to take Beta TCP and Hydrozyme for my digestive system.

So to conclude: exclude/avoid Sugar, wheat and dairy. We also made a diet plan for the next month and she gave me some recipes and other information relating to a wheat and dairy free diet. If there is a correlation between narcolepsy and wheat and dairy intolerance then it might be useful if I post the food plan too. I will do that in the coming days.

The therapist said that I had a lot going on – I couldn’t agree more, that’s why I could not have done it on my own.

Written by Queen of Sleep

March 18, 2010 at 8:57 pm

Posted in Uncategorized

2 Responses

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  1. Hi,
    I’m a nutritionist so was interested to read about your experiences of beginning nutritional therapy to help with the narcolepsy.
    It sounds like you are having thorough tests done and I’m sure you will find the therapy useful.
    When cutting out sugar, you’ll benefit from trying to schedule in a few short naps each day to give you the energy to keep your daytime commitments without relying on stimulants.
    Good luck,


    March 18, 2010 at 9:04 pm

    • Thanks for your comment. I am more worried about the physical emotional response to quitting sugar. A few hours ago I just burst out crying for some petty reason. I imagine it will be like really bad PMT for a week or 2. Best, QoS


      March 19, 2010 at 4:29 pm

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