Narcolepsy Connect

What is Narcolepsy?

Narcolepsy is a neurological disorder that many people find puzzling. It is characterised by excessive daytime sleepiness (EDS), which means feeling overwhelmingly sleepy during the day, especially in monotonous situations. It can lead to lapses in attention and sudden “sleep attacks”, where you nod off without warning. It’s important to know that narcolepsy isn’t your fault, and it’s not something that can be cured.

So here we are, offering a dedicated program run by our narcolepsy champion, Taylah, to help you manage this chronic condition and lead a fulfilling life. To read more about Taylah and her journey with Narcolepsy, please click here.

What are the symptoms of Narcolepsy?

Narcolepsy can affect both your daytime and nighttime experiences. Here are some common symptoms:

Excessive Daytime Sleepiness (EDS): Imagine an irresistible urge to sleep during the day. This drowsiness can make you lose focus and even fall asleep unexpectedly.

Automatic Behaviours: Sometimes, you might continue doing something like writing or typing, but your actions become meaningless because of sleepiness.

Disrupted Nighttime Sleep: Many people with narcolepsy experience interrupted sleep, waking up several times during the night or experiencing random bouts of insomnia. Other sleep issues like restless movements and sleep apnea can also occur.

Sleep Paralysis: You might occasionally feel like you can’t move and are completely paralysed when falling asleep or waking up.

Sleep-Related Hallucinations: Vivid dreams or images can happen as you fall asleep or wake up, and they can be accompanied by sleep paralysis, which can be unsettling and scary whilst experiencing it.

Cataplexy: Cataplexy, which affects people with a specific type of narcolepsy (NT1), involves a sudden loss of muscle control. It can happen when experiencing strong emotions like laughter or excitement and typically lasts a few seconds to minutes.

It’s important to note that not everyone with narcolepsy experiences all these symptoms. They may also not occur all at once. For instance, cataplexy might appear years after you first notice excessive daytime sleepiness.

Remember, you’re not alone in this journey. We’re here to support you in managing narcolepsy and improving your quality of life.

Do I have Narcolepsy? How is narcolepsy diagnosed?

If you are experiencing symptoms of unresolved sleepiness that concern you or suspect you may have narcolepsy, it’s important to seek professional help for a proper diagnosis. Diagnosing narcolepsy is a meticulous process that involves specialised evaluation:

1. Symptoms and Medical History Review: To begin, a skilled specialist will carefully discuss your symptoms and delve into your medical history. This helps them understand your sleep patterns and the nature of your symptoms. Sometimes, involving family members can provide valuable insights into your condition.
2. Polysomnography (PSG)/Sleep test: In some cases, a PSG may be necessary. This detailed test involves attaching sensors to monitor your brain and body activity overnight at a specialised clinic. PSG helps evaluate your sleep architecture and can reveal important information about your condition.
3. Multiple Sleep Latency Test (MSLT): Another valuable tool for diagnosis is the MSLT. During this test, you’ll attempt to fall asleep at different intervals while connected to sensors like those used in PSG. This helps objectively assess your level of sleepiness and how quickly you enter REM sleep, a key marker in narcolepsy diagnosis.

Since narcolepsy can often be misattributed to other conditions, a proper diagnosis is crucial for effective management and improving your quality of life. If you suspect you may have narcolepsy, don’t hesitate to reach out to a specialist who can guide you through the diagnostic process and provide the support you need.

Take our screeing quiz to see if you are at risk of Narcolepsy:

Why Getting Diagnosed with Narcolepsy Matters

Understanding narcolepsy and seeking a diagnosis is crucial because it can have far-reaching effects on your overall health and well-being:

1. Health Complications: Narcolepsy increases the risk of various health issues, such as high blood pressure and mental health conditions like depression, anxiety, and ADHD. Identifying and addressing narcolepsy can help manage and reduce these risks.
2. Safety Concerns: The symptoms of narcolepsy, including drowsiness, sudden sleep attacks, and cataplexy, can pose significant safety risks, especially when driving or in critical safety situations. Studies suggest that individuals with narcolepsy are three to four times more likely to be involved in car accidents. A timely diagnosis and appropriate management can enhance safety for you and those around you.
3. Academic and Professional Success: Narcolepsy can interfere with your ability to perform well in school or at work. Persistent sleepiness and lapses in attention can impact your performance and may be misunderstood as behavioural issues (particularly in children) or even disinterest and laziness. By addressing narcolepsy, you can access the support needed to excel academically and professionally.
4. Social and Emotional Well-being: Many individuals with narcolepsy face stigma associated with their condition, which can lead to social withdrawal and feelings of isolation. Without proper understanding and support, this stigma can contribute to mental health disorders and negatively affect your relationships, education, and career.

In summary, getting diagnosed with narcolepsy is essential for your overall health, safety, academic/professional success, and emotional well-being. By seeking help and support, you can effectively manage narcolepsy and improve your quality of life. Don’t hesitate to take the first step towards a diagnosis and the care you deserve.

Treatment and management of Narcolepsy.

Your Path to a Better Quality of Life

While there’s no cure for narcolepsy, both type 1 and type 2, there are effective treatments aimed at enhancing your well-being, reducing risks, and improving your daily life.

1. Treatment Goals: The primary goals of narcolepsy treatment are to alleviate symptoms, minimise associated risks, and enhance your overall quality of life. Talk to your physician and pharmacist about the medication used. The recommendations made are specific to the individual but typically involve the use of wakefulness-promoting medication with the possible addition of other medications depending on the presence of cataplexy.

2. Stabilising Condition: For many individuals, narcolepsy remains relatively stable over time. In some cases, certain symptoms may even improve, and exceptionally, some people experience spontaneous remission of symptoms. It’s important to note that the reasons behind these variations in the course of the condition are not yet fully understood.

3. Holistic Approach: Managing narcolepsy typically involves a combination of medical and behavioural approaches. These approaches can significantly reduce the impact of symptoms, although some level of excessive daytime sleepiness (EDS) may persist despite treatment. It’s crucial that all therapies are conducted under the guidance of a healthcare professional who can tailor a treatment plan to your unique needs.

Remember, you’re not alone on this journey. With the right treatment and support, you can effectively manage narcolepsy and work towards a better quality of life. Your healthcare provider will be your trusted partner in this process, helping you navigate the best path to symptom relief and overall well-being.

If you need that extra level of support, please enquire about Manse Medical’s Narcolepsy Connect program.

Narcolepsy Connect Program

Join Narcolepsy Connect and Transform Your Life!

Discover a Brighter Future with Manse Medical’s Support and Education Program.

Are you or a loved one recently diagnosed with narcolepsy? Take the first step towards a more manageable and fulfilling life with Narcolepsy Connect, a program designed just for you.

Connect with Taylah Cross – Your Narcolepsy Champion!

Meet our dedicated coach and ambassador, Taylah Cross, who understands the challenges of life before and after a narcolepsy diagnosis. Taylah is here to guide you through this journey with compassion and expertise.

What’s In Store for You?

Join our introductory 4-week Narcolepsy Connect program and benefit from one-on-one sessions with Taylah during your first-month post-diagnosis. Here’s what you can expect:

Session 1: Tailored Assessment

Understand your diagnosis and how it affects your life.

Familiarise yourself with what to expect when you commence treatment/medication.

Session 2: Educational Deep Dive into Narcolepsy

Delve further into narcolepsy education.

Explore effective management strategies.

Session 3: Setting Realistic Expectations

Learn how to track your symptoms while on medication and discern typical reactions and adaptations.

Discover how to optimise your treatment.

Session 4: Q&A and Acclimatisation

Get answers to your narcolepsy questions in an unbiased and supportive environment.

Feel more at ease with your narcolepsy journey.

The 4-week program structure is given as a guide. You have the option to request an earlier review or intervention if preferred. Please let our consultant know at the time of booking so we can tailor the program to meet your needs. Treatment and follow-up do not stop after the initial 4 weeks.