Getting diagnosed with Narcolepsy in Ireland can be a challenge, even in cases where the symptoms seem fairly obvious.  Not every patient displays the full gamut of symptoms and sometimes a neurological sleep disorder is not the first thing that comes to mind when describing associated effects of the illness to a GP. In addition, there are many unrelated conditions that can cause lack of energy, night time sleep problems and particularly in younger people, behavioural issues.  Even within the realm of sleep disorders, there are several conditions that present different challenges and require expert diagnosis.

The GP

If you are concerned that you or your child may have a sleep disorder,  the first step is to visit your GP.  The GP may be able to allay concerns or run blood tests that, for example, identify dietary deficiencies or other problems (e.g. blood sugar issues, etc.).  If sleepiness during the day and disturbed sleep at night are a concern (even if they perhaps don't seem to be the primary issue), ask to be referred to a Sleep Consultant. Sadly, many people have been initially misdiagnosed with conditions such as ADHD and various types of depression, because sleep is not mentioned or is ignored.

The Sleep Consultant

When you visit a Sleep Consultant, or indeed a Neurologist or Respiratory doctor with a specialism in sleep disorders, they will probably ask you a number or questions that relate to a small test called the Epworth Sleepiness Scale. This test helps them to determine the likelihood of having a sleep disorder.

The Sleep Consultant may also be looking for signs of other conditions like Obstructive sleep apnoea, Restless Legs Syndrome, Cataplexy and others.  The consultant will also be looking for information on when the symptoms started.

Testing for Narcolepsy

If the consultant suspects Narcolepsy, they will schedule the patient for an overnight sleep test and a Multiple Sleep Latency Test.  There are only a handful of hospitals in Ireland that are  equipped to perform the MSLT, of which the Mater hospital in Dublin is the most frequently used. At the time of writing, St James' hospital in Dublin (November 2015) is in the process of setting up a sleep clinic.

If is possible that the patient will also be asked for a blood test which is looking to determine information about the patient's immune system human leukocyte antigen (HLA) type.   Lumbar Puncture (Spinal Tap) may also be requested. This is to collect cerebrospinal fluid (CSF) to determine whether any Hypocretin (also known as Orexin) is being produced in the patient's brain.
Results from an overnight sleep study and MSLT will normally be given immediately, and this is normally sufficient to diagnose Narcolepsy.  Analysis of the CSF can take several months, and this may be necessary to determine the type of Narcolepsy that the patient has. For further details see paragraph 1.1.2 in the Brighton Case Definition for Narcolepsy.
If the tests result in a diagnosis of Narcolepsy, the consultant is likely to investigate as to whether the patient was given the 2009/10 H1N1 "Swine Flu" vaccine, Pandemrix.

Where to go next

If your consultant does give you a diagnosis of Narcolepsy and tells you that it is possibly related to Pandemrix, please contact SOUND using our contact page.  We'll try to make sure that you get access to the necessary support.