Many Blackout Patients Misdiagnosed With Epilepsy
Anyone with unexplained blackouts can now access a new checklist to help them and their doctors reach a correct diagnosis. The Blackouts Checklist will be useful for millions, as nearly half of the UK population will suffer blackouts at some stage in life.1 Supporting the launch of this campaign is Sir Roger Moore, patron of STARS, the blackouts charity. The Blackouts Checklist, endorsed by the Department of Health, is available from STARS at http://www.stars.org.uk.
Sir Roger fronted an appeal on BBC Radio 4, on Sunday 18 March, on behalf of STARS. Sir Roger commented, “I was lucky, having blacked out on stage I received excellent and rapid medical attention, and I now have a pacemaker which kicks in whenever my heart rhythm requires a correction. Thousands of sufferers aren’t so lucky.”
Blackouts triggered by cardiovascular irregularities can appear similar to epileptic seizures and are often misdiagnosed as such.1 These blackouts happen when blood supply to the brain is interrupted,2 this is known medically as syncope [SIN-koh-pee]. Blackouts are much more likely to be due to syncope than epilepsy.3 Despite this, the condition is relatively unknown, and it is estimated that over a third of patients diagnosed with epilepsy may have been misdiagnosed.1
Many blackout patients never see a heart rhythm specialist and become diagnosed incorrectly. Sir Roger added, “This checklist is what anyone who has had a blackout should use, as it could save years of confusion, fear and the tragedy of misdiagnosis.”
Blackouts can also be a first symptom of a fatal irregular heart rhythm,4 which causes over 100,000 deaths every year in the UK.5 Many of these lives could be saved with appropriate diagnosis and treatment.6 Despite these arrhythmias (heart rhythm disorders) being the leading single cause of death in the UK,7 there are fewer than 70 heart rhythm specialists in the whole country8 – not even one for every ten thousand sufferers.6
“A failure to realise that blackouts are much more likely to be due to syncope than epilepsy can frequently lead to misdiagnosis of epilepsy. Also, a “faint”, (the commonest cause of syncope), can be abrupt, can be accompanied by twitching and jerking, injuries and incontinence, just like epilepsy” – explained Dr Adam Fitzpatrick, a Cardiologist and Heart Rhythm Specialist from the Manchester Heart Centre. “It is really important that patients provide as much accurate information as possible when they see their doctor, and always attend with an eye-witness wherever possible. Another valuable contribution is video. Increasingly, the use of video-phones for recording an attack is adding huge value. The Blackouts Checklist is exactly what we need patients to use as a guide when seeking an accurate diagnosis and effective treatment.”
Trudie Lobban, founder of STARS, added, “When patients are empowered with important information they can help their doctor better understand the symptoms and nature of their blackouts. This can help avoid a long list of referrals, misdiagnosis and inappropriate treatment before an accurate diagnosis is secured.”
Patients and parents can access a copy of the checklist from stars.org.uk.
A download of Sir Roger Moore’s BBC Radio 4 appeal (broadcast on Sunday 18 and repeated on Thursday 22 March 2007), is accessible at bbc.co.uk/radio4.
STARS was founded by Trudie Lobban in 1993 after her daughter Francesca was diagnosed with Reflex Anoxic Syncope with the support of Prof. J Stephenson, Consultant Paediatric Neurologist – Royal Hospital for Sick Children, Glasgow.
STARS aims to alleviate the effects of, and provide support and information on, syncope to those in distress as a result of these blackouts, whether suffered by themselves or as a member of the family group.
STARS patrons include Sir Roger Moore, Twiggy and celebrity chef John Burton Race. Sir Roger and John Burton Race have both suffered from syncope and have pacemakers fitted.
1. Petkar, S., Jackson, M., Fitzpatrick, A. Management of blackouts and misdiagnosis of epilepsy and falls. Royal College of Physicians Journal : vol 5 : September/October : Conference reports
2. European Society of Cardiology, Guidelines on Management (Diagnosis and Treatment) of Syncope, Update 2004 escardio.org
3. Fitzpatrick, A; Cooper P. Diagnosis and Management of Patients with Blackouts. Heart 2006; 92: 559-568
5. Arrhythmia Alliance data on file
6. Department of Health, National Service Framework, Arrhythmias and Sudden Cardiac Death, Chapter Eight, 4 March, 2005. Link here.
7. Heart Rhythm UK hruk.org.uk
8. Arrhythmia Alliance Annual UK Heart Rhythm Congress, September 2006 – retrieved from heartrhythmcharity.org.uk on 7 March 2007