Narcolepsy? Or is this just Histamine induced Sleep?
Narcolepsy? I am not really sure if I have this as it has not been diagnosed. In fact I was once told by a specialist that I didn’t have it. Not sure that he specialised in narcolepsy though! However, one of my symptoms is what I call “sudden sleep”. My brain can, sort of cut out and I can find myself asleep or something approaching it with my head on my desk. Sometimes I am aware of stuff going on around me and yet I am not able to wake up and respond. At times, in the past, I have been so deeply asleep I did not wake up at my train stop. While traveling on trains, I have been robbed of my phone and money as someone just walked by my happily snoozing self and took my stuff!. On planes, I used to fall asleep before take off and wake up only after touch down. Some people do see this as a blessing!
When I was studying law at Cambridge University, I was always at my best in the early morning. 5.30am would see me at my desk, writing my essays, always before eating anything. Later in the day, once I had eaten my lunch, I could be found napping at my desk. I often missed afternoon lectures by mistake.
I remember once going to lunch with a friend who had created dish of raw mushrooms in lime juice, just for me. It was delicious. 2 hours later, I had to pull off the motorway and sleep for an hour. The urge to sleep was overwhelming and driving was impossible.
Some years ago, had a sort of blackout for an evening. I do not remember much about what happened. In the early hours of the following morning, I woke up at home, on the floor of my dining room, fully clothed and covered in blood stains. I had bruises all over my head. My husband said that I arrived in a taxicab and that the driver had knocked on our front door and said ” I think I have your missis in the car”! They had lifted me out of the cab and I had walked into the house and collapsed onto the floor. My husband could not find the source of the blood stains and decided to leave me to sleep it off. He thought I had drunk too much alcohol! Actually, I knew I had drunk no more than one glass of wine.
My last memory prior to my floor napping gig? – being in a wine bar, in London, after work. How I managed to get home – some 40 miles and a cab ride/ train ride/cab ride – away – I really have no idea. I have some vague recollection that, at some point, I smelled the overwhelming smell of stale cigarette smoke, right next to my nose, and I clearly heard a male voice saying, ” It’s all right, Love, it happens to all of us”. Then I defended into blackness once more. I think he must have lifted me off the train. Who gave my home address to the taxi cab driver?
How I managed to have blood on my clothes was explained the next day. It belonged to a girl friend who had cut her hand. She had fallen while carrying a wine glass. Apparently I took my injured friend to the ladies’ bathroom and tried to bind her hand with toilet paper! I just don’t remember this at all!
My change purse was still at the wine bar and my handbag (purse) was handed in at the lost property office of London Waterloo railway station. Happily, I recovered all my personal effects. Apparently our male colleague had taken me to Waterloo in a taxicab and had helped me onto my train where I had then told him I was fine! I still have absolutely no recollection of that evening apart from what I have recounted here.
If you were one of the wonderful guardian angels who got me home then thank you so much. Someone was really looking out for me that evening.
After this time, I didn’t like to drink wine without people being around me. I am realising, as I write, that this incident affected me in a lot of ways I had not previously appreciated.
I went to consult my doctor about it but she put the whole event down to “bad wine”. I assumed, at the time, that someone must have slipped something in my drink! When I think about it now, I don’t think that actually happened. I was out with 2 friends who were fellow lawyers and no one had any reason to do that to me!
Is this Narcolepsy or what?
Looking back, so what do I think now? I think the medic may have been wrong. I think that, possibly, I have histamine induced narcolepsy and possibly cataplexy. There are now studies that indicate that there may be a link between histamine and narcolepsy. See, for example, this paper. Histamine is , after all, a neurotransmitter.
Will I now get a diagnosis? Do I need one? I am now not sure what it will do for me. Any prescribed medication, that I have ever taken, has usually given me adverse reactions so I am pretty cagey about meds now. I also experienced “sudden sleep” when I took ‘over the counter’ anti histamine medication. I only took one tablet and spent the next 24 hours asleep in bed.
When I was finally diagnosed with histamine issues, I was told that there were quite a few people reporting that they had unexplained blackouts where they didn’t remember a thing. If you have had one then please share. Have you been diagnosed with narcolepsy?
What do I do to deal with my “narcolepsy”?
What I now know is that, if I eat certain foods, then I can put myself straight to sleep. Now, if I drive, then before I get into the car I do not to consume histamine rich foods that I know might trigger me. If I eat something that disagrees with me I usually have some warning that I will have to go to sleep now and, if I find I am nodding off, I can take appropriate action, such as ceasing driving. I usually now have time to warn people around me that this is what is going to happen. I have time to go a lie down on my bed. When I am out and about I am very careful with what I eat. I know that this sleep thing could return with a vengeance.
I am still at my best in the early morning and I use this time as my thinking and getting on with things time. Having said that, I can now work into the evening without that weird brain fog I used to experience. Amazing thing this way of eating!
So for me it really was very simple! I stopped eating the foods that make me go to sleep. I have even found I can stay awake during a short plane trip! I am not sure now if my sleep episodes on planes were food related or the quality of the air polluted with perfumes and other chemicals. Plane fuel apparently permeates cabin air! Who Knew? Anyway, despite the cabin air quality, last October’s trip to Italy was the first time, for years, that I stayed awake for the whole flight! So a new experience for me!
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