Living with Narcolepsy: A Conversation with Maria Ramos

*The translation of this article in French and Portuguese has been made through machine translation and has not been edited yet. we apologise for any inaccuracies.

What is narcolepsy and how is it to live with this condition? This month, we spoke with Maria Ramos, a 26-year-old from Spain who is living with narcolepsy. Maria openly discusses her journey of living with this rare sleep disorder, shedding light on the challenges she faces, the early signs of narcolepsy she experienced, and some misconceptions surrounding her diagnosis.

The National Organisation for Rare Disorders reports around 1 in every 2000 people may have narcolepsy.* Continue reading to explore what narcolepsy is, its causes, symptoms, and how Maria has dealt with living with this rare condition.

living with narcolepsy

5 Quick Facts About Narcolepsy

1. What is Narcolepsy?

Narcolepsy is a long-term neurological condition and a sleep disorder that causes excessive daytime sleepiness, fragmented sleep, brain fog, and other symptoms.

2. Narcolepsy Symptoms:

  • Excessive daytime sleepiness
  • Sleep attacks (falling asleep suddenly and without warning)
  • Cataplexy (muscle weakness triggered by emotions)
  • Sleep paralysis (temporary inability to move or speak when waking)
  • Excessive dreaming, waking during the night, and hallucinations
  • Brain fog and poor concentration
  • Decreased energy
  • Memory lapses
  • Exhaustion
  • A depressed mood

3. What Causes Narcolepsy?

Narcolepsy is often linked to a deficiency in hypocretin, a brain chemical that regulates sleep. This deficiency is believed to be caused by the immune system mistakenly attacking the brain areas responsible for producing hypocretin. However, not all cases of narcolepsy are caused by this lack of hypocretin.

4. Is Narcolepsy Genetic?

Research cannot definitively determine if narcolepsy is present from birth. Some studies suggest infection, trauma, or injury might trigger autoimmune mechanisms in genetically predisposed individuals, leading to narcolepsy. Although there are rare families where narcolepsy is passed on through several generations, most cases of narcolepsy occur at random rather than being inherited.*

5. Narcolepsy Treatment:

There is no cure for narcolepsy. However, effective management of its symptoms can significantly improve daily life. Making adjustments to sleep habits, eating habits, and exercise habits can be helpful in many cases. For more severe symptoms, medication is an option to effectively control narcolepsy’s impact on daily functioning.

rare sleep disorder

Getting Diagnosed with Narcolepsy

Maria can recall feeling symptomatic when she was just 10 years old, although the official diagnosis came much later. Looking back, she remembers her mother being the first to notice the sudden episodes of muscle weakness, known as cataplexy, which for her were triggered by laughter or sudden strong emotion. Maria recalls, ”I remember I was enjoying a meal at home with my family when I laughed so hard that a cataplexy episode came on quickly – in front of everyone. My mother searched the internet and found out what I experienced was called cataplexy and it was associated with narcolepsy. She continued researching online and found additional symptoms I had been experiencing were also connected with narcolepsy. Symptoms such as falling asleep often, fatigue, irritability, and even weight gain – all things I was experiencing, and a narcoleptic person can experience too. Because my mother was determined to find answers, I believe my diagnosis came quicker.

It took a whole summer of medical appointments and consultations with specialists for Maria, who was then just 18 years old before narcolepsy was officially diagnosed by a neurophysiologist. Maria’s journey to her diagnosis was not straightforward, as she had to undergo several tests and consultations with specialists. A general practitioner initially referred her to an endocrinologist to rule out any hormonal imbalances. Maria was then referred to a neurologist for further evaluation. The neurologist played a vital role in performing tests to eliminate other possible sleep disorders, such as sleep apnoea. Finally, she was referred to a neurophysiologist who, without a doubt, confirmed Maria’s narcolepsy diagnosis during the very first appointment.

signs of narcolepsy - rare sleep disorder

Overcoming the Limitations of Living with Narcolepsy

Living with narcolepsy has presented Maria with certain limitations and precautions she must take to ensure her safety each day. She is advised against operating machinery or driving any vehicle professionally. ”I also need to be careful around heights, riding motorcycles, or certain attractions”, she states. Despite these restrictions, Maria takes an optimistic approach and focuses on the activities she can enjoy safely, finding alternative ways to live a fulfilling life. She further explains, ”Anything that involves constant physical fatigue, in the long run, is unfeasible, be it a job or an activity. When I do an activity that requires more energy than usual, the next day I need to recover. Generally, staying up all night is not a good idea and with the necessary medication I am prescribed I cannot drink alcohol”.

Maria also finds comfort in keeping to an orderly routine with very few daily changes. From going to sleep and waking up at the same time, consistently taking a 20-min nap after eating, to not staying up too late or overdoing it with exercise or strenuous activities during the day, she maintains a healthy life with narcolepsy. “In my experience, anything that tires me more than normal during the day is cause for additional sleep the next day. Also, no matter how much I try to sleep, I can still have trouble getting a full rest at night.”

rare sleep disorder

Types of Narcolepsies and Essential Health Habits

There are two main types of narcolepsy: type 1 and type 2. Type 1 narcolepsy is known as narcolepsy with cataplexy. Type 2 is called narcolepsy without cataplexy. Individuals with narcolepsy type 1, such as Maria, have very low levels of hypocretin, a naturally occurring chemical peptide that is produced in the brain. This chemical plays a key role in the regulation of sleep and mood. Although low levels of hypocretin cause daytime sleepiness, it can often cause trouble with staying asleep at night.

In addition to medication, Maria monitors her intake of healthy nutrients to help better control her sleep-wake cycles. She explains, “Carbohydrates give me a lot of energy quickly but then they produce insulin spikes which can make me feel worse later. Proteins keep my energy more constant and don’t take a toll on me afterwards – so I stick to choosing proteins instead of carbohydrates when hungry. I try to never be too full because it makes me sleepier. Eating dinner three hours before bed makes me rest better. Intermittent fasting also keeps me more awake and active. My idea is I can’t be hungry, thirsty, and sleepy at the same time – that works for me!

Exercising in the morning also helps Maria to be awake during the day. She usually rides her bike to class in the morning to ensure she is awake and alert to learn. Maria acknowledges “All this is based on an ideal day; however, the rhythm of life often requires skipping one thing or another. So, I am constantly struggling to keep my balance.

narcolepsy- rare sleep disorder

Maintaining a Balanced Life with Narcolepsy

The balancing act of maintaining a healthy diet, regular exercise, and consistency with taking medication can be difficult for anyone. To make matters even more challenging, comorbidities such as restless leg syndrome, mental health issues, diabetes, and other endocrine disorders are common for those with narcolepsy. “Five years after seeing the endocrinologist I was also diagnosed with an autoimmune hypothyroidism condition called Hashimoto’s”, Maria shares. Hashimoto’s disease is an autoimmune condition that causes your immune system to attack your thyroid gland. The additional diagnosis does not shake Maria’s positive outlook.

Maria’s advice to those newly diagnosed with narcolepsy is “Narcolepsy does not go away, allow yourself the time it takes to accept it. Don’t demand to ‘be normal’ and don’t think being out of the ordinary is a bad thing. Not being able to do everything other people your age is doing daily does not mean that you can never do it. Just like everyone, we must recover after overindulging, however, for us with narcolepsy, fatigue will overtake us if we don’t. But sleeping is not bad, resting or planning to recover is not bad. It is a matter of seeking balance and looking at life from a different perspective. After all, everyone takes care of themselves according to their conditions. And don’t be fooled, narcolepsy doesn’t make you lazy – it makes you stronger. Doesn’t constant effort lead you to overcome?

If you, or anyone you know, has been diagnosed with narcolepsy join our panel to provide your insight on the treatment journey. Your voice can lead to an improved understanding of the symptoms, the effectiveness of treatments, and further development of future therapies for narcolepsy.
If you, or anyone you know, has been diagnosed with narcolepsy join our panel to provide your insight on the treatment journey. Your voice can lead to an improved understanding of the symptoms, the effectiveness of treatments, and further development of future therapies for narcolepsy.

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