Categories
epilepsy Media news

Sarah’s Epilepsy Fundraising Story

Sarah Reid – is an inspiration and a member of the Bristol Epilepsy Support Group, in Bristol, England.

In spite of undergoing surgery for left temporal lobe epilepsy this year at Southmead Hospital, Bristol, Sarah has still managed to fundraise relentlessly for the five charities closest to her heart: Epilepsy Society, Young Epilepsy, Epilepsy Action, Young Carers and Mothers for Mothers.

‘Fundraising is a way of giving back,’ said Sarah. ‘Epilepsy Society and the other four charities have always been there for me when I have needed them. They have supported me in the lead up to my surgery, they have been there for me when I have been having a down day or when I have been struggling with my seizures or with employment issues.

Sarah fund raises for the #epilepsy group in Bristol, she says that…

It was rewarding giving a cheque last night  (February 6th, 2018) for over £40 to Bristol Epilepsy Support Group!

It was lovely giving 107 epilepsy information packs with laylas book epilepsy book for kid’s inside with 1st aid leaflets young epilepsy sent and young carers leaflets too. With information as well as stickers and balloons to put inside to help making the information packs exciting and educational , raising epilepsy awareness and money for epilepsy charities.

When I was at school teachers told me off for daydreaming when really I was having a seizure. I hope that raising epilepsy awareness in schools will stop what happened to me happening to anyone else.

Sarah also says..

A big thank you to staff and customers at downend co op for helping me to raise the money and to young epilepsy and young carers who kindly donated information leaflets and stickers and balloons. 

Now my next goal is to raise another £700 to send enough information packs for schools in Bristol.   Then my daughters Layla’s book and information packs will be in all South Gloucestershire schools and Bristol schools raising epilepsy awareness.  The cheque from the profit from her book will be sent to the Epilepsy Society in the next few months.

I am at Downend Co-op in Bristol, every week raising money for 7 charities close to my heart and donating Layla’s book EPILEPSY BOOK FOR KID’S to schools, epilepsy charities, to hospitals and to families who need them. 

You can buy the book on AMAZON here : https://www.amazon.co.uk/Epilepsy-Book-Kids-Layla-Reid/dp/1842890190 , or at Waterstones Bookstore in the UK here : https://www.waterstones.com/book/epilepsy-book-for-kids/layla-reid/9781842890196

Sarah continues..

Recently, I was in contact with a lady called Sarah from South Gloucestershire council who found the best was to get my daughter’s epilepsy book to schools was through the school’s nurse’s. I took all the epilepsy information packs to the kingswood hub where the school nurse’s loved them and thought they were a great way to raise epilepsy awareness and money in schools!.

Categories
Bristol Education epilepsy events Health news

Bristol University Neuroscience Festival 2018

Bristol University Neuroscience Festival 2018

Friday 23rd March  – 4:00 pm to 6:00 pm  – Great Hall, Wills Building, Park St

Come and talk to scientists, investigate interactive exhibits and hands-on activities lead by scientists, explore the ‘Evolution of the brain’ and ‘Brain Art’ exhibitions and much more. Find out about current Neuroscience research through state of the art research posters.

Friday 23rd March  – 6:30 pm to 8:00 pm  – Victoria Rooms, Bristol University

Plenary lecture with Paul Howard-Jones: ‘The prehistory and future of the learning brain: How did we get this smart and what next?’

CLICK HERE TO BOOK YOUR FREE TICKETS

How does learning transform us biologically? What learning processes do we share with bacteria, jellyfish and monkeys? Is technology impacting on brain evolution?

These are just some of the questions explored on a fascinating journey through 3.5 billion years of brain prehistory.

Along the way, we discover:

  •  how the E. coli in our stomachs learn to find food
  •  why a little nap can help bees find their way home
  •  the many ways that action, emotion and social interaction have shaped our ability to learn and
  •  the central role of learning in our rise to top predator

Finally, this trek through time will lead us to ask: Faced with the unprecedented challenges of the 21st century, will evolution lead us to enhancement or extinction?

Saturday 24th March 2018 10am to 5pm , Great Hall, Wills Building, Park St

FREE Entry !

For all the public talks for which you need to book for, PLEASE CLICK HERE

For the event’s programme, PLEASE CLICK HERE to Download the PDF

Categories
epilepsy Epilepsy Awareness Day and Expo at Disneyland events Media news

Video: Dr Rami Apellian, Epilepsy Epileptologist and MD

Sam Downie interviews Dr Rami Apellian, Epilepsy Neurologist and Epileptologist.

Interview recorded at Epilepsy Awareness Day and Expo, at Disneyland Resort, 2016.

Watch the TALK from Epilepsy Awareness Day and Expo 2016

Visit his website at : www.DrRamiApelianmd.com/

Categories
epilepsy Epilepsy Awareness Day and Expo at Disneyland events Media news

VIDEO: Dr Mona Sazgar, Epilepsy Epileptologist

Video from Epilepsy Awareness Day & Expo at Disneyland Resort, November 2016.

Dr Mona Sazgar, Epilepsy Epileptologist, OC, USA

Categories
epilepsy meetings

July Meeting: What Took Place

WHAT TOOK PLACE AT OUR MEETING: JULY 4th, 2017

A. MEDICINES UPDATE :

Our Nurse Helen talked about Medications that are not available any longer ( a list of what was mentioned will be available here soon ) .

We also talked about how AEDs work. There’s a really good film to watch by Epilepsy Research UK, presented by Chair of Trustees, Dr Graeme Sills, who gives you a clear picture of the type of drugs that are used in epilepsy and how they work.

B. NEW 7T MRI SCANNER IN CARDIFF

We talked about a new 7T MRI at Cardiff University, that is now being used for Epilepsy and other conditions. The BBC made a film about this and we showed it in the group, you can watch it via this link:

http://www.bbc.co.uk/news/health-40488545

The world’s most detailed scan of the brain’s internal wiring has been produced by scientists at Cardiff University.

The MRI machine reveals the fibres which carry all the brain’s thought processes.

It’s been done in Cardiff, Nottingham, Cambridge and Stockport, as well as London England and London Ontario.

Doctors hope it will help increase understanding of a range of neurological disorders and could be used instead of invasive biopsies.

Fergus Walsh (BBC Journalist) volunteered for the project – not the first time his brain has been scanned, he says.

Computer games

In 2006, it was a particular honour to be scanned by the late Sir Peter Mansfield, who shared a Nobel prize for his work on developing Magnetic Resonance Imaging, one of the most important breakthroughs in medicine.

He scanned me using Nottingham University’s powerful new 7 Tesla scanner. When we looked at the crisp, high resolution images, he told me: “I’m a physicist, so don’t ask me to tell you to whether there’s anything amiss with your brain – you’d need a neurologist for that.”

I was the first UK Biobank volunteer to have their brain and other organs imaged as part of the world’s biggest scanning project.

More recently, I had my brain scanned while playing computer games, as part of research into the effects of sleep deprivation on cognition.

So my visit to the Cardiff University’s Brain Research Imaging Centre (CUBRIC) held no particular concerns.

Brain scan
Image captionDoctors hope the scans will increase understanding of neurological disorders

The scan took around 45 minutes and seemed unremarkable.

A neurologist was on hand to reassure me my brain looked normal.

My family quipped that they were happy that a brain had been found inside my thick skull.

But nothing could have prepared me for the spectacular images produced by the team at Cardiff, along with engineers from Siemens in Germany and the United States.

The scan shows fibres in my white matter called axons. These are the brain’s wiring, which carry billions of electrical signals.

Axonal density

Not only does the scan show the direction of the messaging, but also the density of the brain’s wiring.

Another volunteer to be scanned was Sian Rowlands who has multiple sclerosis.

Like me, she is used to seeing images of her brain, but found the new scan “amazing”.

Conventional scans clearly show lesions – areas of damage – in the brain of MS patients.

But this advanced scan, showing axonal density, can help explain how the lesions affect motor and cognitive pathways – which can trigger Sian’s movement problems and extreme fatigue.

Brain scan
Image captionThe scanner is one of only three in the world
Brain scan
Image captionThe scan shows fibres in the brain’s white matter, called axons

Prof Derek Jones, CUBRIC’s director, said it was like getting hold of the Hubble telescope when you’ve been using binoculars.

“The promise for researchers is that we can start to look at structure and function together for the first time,” he said.

The extraordinary images produced in Cardiff are the result of a special MRI scanner – one of only three in the world.

The scanner itself is not especially powerful, but its ability to vary its magnetic field rapidly with position means the scientists can map the wires – the axons – so thinly it would take 50 of them to match the thickness of a human hair.

The scanner is being used for research into many neurological conditions including MS, schizophrenia, dementia and epilepsy.

My thanks to Sian, Derek and all the team at CUBRIC.

Follow Fergus on Twitter.

C. BBC RADIO 5 LIVE EPILEPSY FILM

BBC Radio 5 Live have released a video – 5 things to know if you love someone with epilepsy. It is a moving story about a mum of three Rachael. All three of Rachael’s children have epilepsy and they can sometimes have up to ten seizures a day. “You never know when your child might start having seizures,” said Rachael. “If you’re able to know what a seizure looks like, it might just take that fear away from you slightly.”

Watch the film here : http://www.bbc.co.uk/programmes/p057d2r3

D. WHAT IS THE VNS ?

We talked about the benefits of the VNS ( Vagal Nerve Stimulator ) in Epilepsy. A few of the members of the group have it implanted. They talked about their own experience of it, whilst other asked questions. Our Nurse Helen explained what it did.

E. OUR NEXT MEETING

Our Next meeting takes place in September, the 1st Tuesday of the month, from 7PM. We shall have a speaker from the hospital. More details will be added here soon.

 

Categories
BBC News epilepsy Media news

News: Pregnant Women ‘Unaware’ of Epilepsy Drug Risks

Updated: 27th Feb, 2013

Watch on BBC iPlayer, BBC Inside Out London : Dr Rosemary Leonard asks if GPs are failing to warn their pregnant patients about the risks of one of the UK’s most widely-used epileptic drugs.

Link to Watch BBC iPlayer : http://www.bbc.co.uk/iplayer/episode/b01qzfrp/Inside_Out_London_25_02_2013/

[hr]

From BBC London NEWS : http://www.bbc.co.uk/news/uk-england-london-21523434
By Zack Adesina – BBC Inside Out, London

Concern is growing that mothers-to-be are not aware enough of the dangers of an epilepsy drug known to cause severe abnormalities in foetuses.

Sodium valproate has long been known to increase babies’ risk of cleft palate and spina bifida.

Now new research has revealed some babies exposed to the drug also have mental problems and a survey found 25% of mothers were unaware of the risks.

The drug’s manufacturers insist they have always warned of the dangers.

Sodium valproate is one of the most effective drugs for controlling epileptic seizures.

But it presents risks if taken by expectant mothers, with an increased chance of physical deformities.

Dr Peter Turnpenny, consultant clinical geneticist at Royal Devon and Exeter Hospital, said: “We know the risk of physical birth defect is certainly 10%.

“The increased risk of spina bifida is 20 times higher than in the background population.

“I am still seeing young children – sometimes babies – who clearly appear to be damaged by exposure to these drugs.

Birth defects

As a GP with 24 years of experience I believe the warnings on this leaflet are inadequate.

Dr Rosemary Leonard

“Many of them have residual problems well into their teens and early adult life and some of them will undoubtedly not be able to lead independent lives.”

A new study has found 12% of babies exposed to the drug in the womb could have mental disorders.

Speaking for the first time, its author, neuropsychologist Professor Gus Baker, said: “We followed up 600 from birth to six years of age.

“We found out that children exposed to sodium valproate were at a greater risk of intellectual delay, memory problems, language difficulties and behavioural problems.”

The new report concludes children born to mothers on sodium valproate are six times more likely to be diagnosed with disorders such as autism.

Emma Murphy with one of her daughtersEmma Murphy, who has epilepsy, has given birth to five children with health problems she believes were caused by sodium valproate.

Mrs Murphy feels she was never warned about the dangers by either her doctors or the drugs company.

She told the BBC’s Inside Out London: “Symptoms my children experience are autism, cerebral palsy, deafness, incontinence, mobility issues and constant aching in their body.

“It wasn’t until I was through my fourth pregnancy that I found out about the effects of Epilim (sodium valproate).

Emma Murphy, who has epilepsy, says her children have a range of disabilities

“As a mum you do have the guilt trip.”

Mrs Murphy’s experience is not unusual. Charities working in the sector estimate that globally thousands of children may have been harmed.

National guidelines insist all women of child-bearing age with epilepsy should be informed about the risks the drug may have on an unborn baby.

But 20 years after concerns were raised about the drug, a new study has revealed some GPs are failing to alert patients.

Reduced IQ points

Nicole Crosby-McKenna, of Epilepsy Action, said: “We did a survey of women with epilepsy and asked them about the information and counselling they receive about pregnancy.

“Over 20% of those women hadn’t received any information in connection with pregnancy.”

Professor Matthew Walker, head of the epilepsy department at the National Hospital for Neurology and Neurosurgery, said: “The evidence has become stronger – foetal exposure to valproate knocks somewhere between seven to 10 IQ points off the child.

“I’m finding a lot of women are not being warned about the potential risks of valproate.”

Sanofi, the company that markets the drug under the brand name Epilim, has always denied liability for any birth defects.

But campaigners claim the company’s warnings have always lagged behind research.

Janet Williams, of pressure group In Fact, said: “There were a lot of research papers out in the 80s and 90s when they said there was such a thing as valproate syndrome.

[We] regularly review and make changes to core safety information in the light of emerging data that could have an impact on the safety profile of valproate” – Sanofi spokesmanPharmaceutical company

“But it wasn’t until 2005 that they actually changed the leaflet.”

A spokesman for Sanofi said: “[We] regularly review and make changes to core safety information in the light of emerging data that could have an impact on the safety profile of valproate.

“The product information made available to doctors by Sanofi in relation to sodium valproate has at all times since the product was first marketed in the early 1970s contained a warning of its teratogenic [abnormality-causing] potential.”

The current leaflet provided with another brand of the drug, made by Wockhardt, clearly highlights risks to any unborn child including spina bifida, congenital abnormalities and delayed development.

But GP and broadcaster Rosemary Leonard said: “As a GP with 24 years of experience I believe the warnings on this leaflet are inadequate.

“There is no specific mention of long term learning difficulties, of low verbal IQ or autistic spectrum disorders.

“Reading this, a potential mother-to-be may well not realise the severe and extensive potential side effects that this drug can have.”

A spokeswoman for Wockhardt said: “We consider that in the leaflet the patients are adequately warned.

“The patient information leaflet for sodium valproate has been approved by the medicines and healthcare products regulatory agency.”

Health experts say women with epilepsy who are pregnant should not stop their medication but consult their GP or epilepsy specialist.

See more on this on Inside Out on Monday 25 February on BBC1 at 19:30 GMT.

Categories
Action Campaigns epilepsy Epilepsy Action events

PURPLE DAY – MARCH 2013

web-purple-dayThere isn’t just one reason to hold an event for Purple Day, there are 600,000! That’s the number of people living with epilepsy in the UK right now.

Event details

When: Tuesday 26 March 2013
Where: Nationwide

About Purple Day

Purple Day is the international day for epilepsy awareness. To celebrate this year, Epilepsy Action will quite literally be turning purple – and we want you to join us! You can do anything – just make sure its PURPLE!

Organising a Purple Day event really is simple! Whether you paint yourself purple, organise a purple bake off or host a purple tea party you can hold your Purple Day event anywhere and invite anybody along to share in the fun.

Last year Epilepsy Action had Purple Day events all over the UK; from London to West Glamorgan, in schools, homes and workplaces.

Purple Day 2013 LogoLinks:

Epilepsy Action Websitehttp://www.epilepsy.org.uk/
Purple Day Websitehttp://www.purpleday.org/

 

Categories
Action Campaigns epilepsy Epilepsy Action events Health news NHS

NHS TEDMEDLIVE – Bristol NHS Health Partners want to hear your views on upcoming changes

northnhsbristol_logo

Bristol HealthPartners are keen to hear from the citizens of Bristol on what they think the biggest health challenges are for the city. Please could you forward this message/information to members of your patient groups.

In partnership with TEDMED, Bristol Health Partners are running a TEDMEDLIVE conference in Bristol on April 18th and 19th and want to canvass your views. One of the sessions at the event will be chosen by the people of Bristol, (in association with The Bristol Post) on what you think are the biggest health challenges for the city.

Please see the links below for more background information, read what the press say and how to register for the event:

To find our more, (CLICK HERE TO DOWNLOAD THE PDF LETTER) from the North Bristol NHS Trust

http://www.thisisbristol.co.uk/think-Bristol-s-biggest-health-challenges/story-17890953-detail/story.html

And Register your interest for the event on the Bristol Health Partners website (click link below):

http://www.bristolhealthpartners.nhs.uk/tedmed-live-bristol/

 

Categories
Action Campaigns epilepsy Epilepsy Action Health news NHS

A Critical Time for Epilepsy in the UK

From the Epilepsy Action website : http://www.epilepsy.org.uk/involved/campaigns/a-critical-time

Today Epilepsy Action has launched its new report, A Critical Time for epilepsy in England. The report shows that epilepsy health services in England are not good enough and vary in many areas. It also shows that many of the new organisations responsible for NHS services are not considering epilepsy in their plans for the future.

Epilepsy Action’s Vice President, Laura Sandys MP, will later formally launch the report at a reception in the House of Commons. Members of Parliament, Members of the House of Lords, key organisations and people with epilepsy will all be in attendance to hear the findings of the report, and Epilepsy Action’s recommendations to improve services.

The surveys

Last year we conducted four surveys around health services for people with epilepsy in England. We believe this makes up the most comprehensive study of epilepsy services ever carried out in the UK. These surveys were of:

  • People with epilepsy.
  • Acute trusts (hospitals and Foundation trusts that provide services).
  • Primary care trusts, primary care trust clusters and newly forming clinical commissioning groups (who provide and buy health services for people).
  • Local authorities, who will soon have a role in deciding local health priorities.

The results from these surveys showed that the services provided at the moment are not good enough.

The headlines

We found that the services currently being provided are not meeting the needs of people with epilepsy. These results mirror similar findings uncovered by Epilepsy Action’s 2009 report, Epilepsy in England: time for change. Just as then, we have found that access to specialists can depend upon where you live. In some places the basic elements of an epilepsy service, such as an epilepsy specialist nurse, are missing.

We also found that not enough is being done to plan for better services once changes to the NHS, planned for April, have taken place. Although we surveyed the organisations during the big NHS changes, it was clear that epilepsy was not featuring in plans as it should have been. This leaves us concerned that there are no plans to address these gaps over the next few years.

Recommendations

Our report carries 10 recommendations that we believe, if carried out, would significantly improve epilepsy services. They include:

  • Each clinical commissioning group agreeing to carry out an assessment of the needs of their patients with epilepsy.
  • All clinicians to make sure their patients with epilepsy have been offered a care plan, and to help them create one if they haven’t.
  • Members of Parliament to follow up this report with their local health trusts to see that they make plans to address the problems we’ve identified.
  • The Health Select Committee in Parliament to conduct a first ever inquiry into epilepsy services. This would hopefully lead to an action plan to address any problems that the Committee identifies.
  • To see all our Recommendations in full, please read our full report.

Copies of the report

This report is aimed at clinicians, health service commissioners and elected officials. However anyone can download a copy. (<< click on this link to download the PDF document of the report)

If you are a clinician or a commissioner, or you are campaigning with us, you can get a free hard copy of this report. To do this, please get in touch with us using the details at the bottom of this page.

Campaign with us

Epilepsy Action is making sure that all MPs, Peers, hospital trusts, clinical commissioning groups and local authorities get a copy of the report. We will be including any relevant results we have for their local area.

However we do not want the report to gather dust on a shelf, without any changes coming as a result. So we are asking our supporters to write to their new CCG and their local authority (council) to ask what actions they will be taking now that they have seen our report.

To help with this, we have made some of the key statistics for each area available on a map. There are two maps – one shows the responses from local authorities, and one which shows what health trusts told us.

We are then encouraging our supporters to promote our report to the service planners in your part of the country.

Below we have drafted two letters to help with this.

  • You can write to your new clinical commissioning group, to ask what plans they have to improve services for people with epilepsy.

Find the contact details of your new CCG. If you are not sure which CCG you belong to, you can contact Epilepsy Action’s campaigns team to help you find out.

You can use (download) this template letter as a starting point to help with your own letter.

  • You can write to your local council, who will soon have new responsibilities for planning local health and social care services.

Find the contact details of your local authority.

You can use (download) this template letter as a starting point to help with your own letter.

If you do write to your local CCG or council, tell us how you get on. This will help us to form a picture of how services are developing around England.

If you would like more information about the research or how you can campaign with us, please contact the Campaigns team by either emailing campaigns@epilepsy.org.uk or calling Epilepsy Action on: 0113 210 8800.

If you work for a NHS health trust, a PCT, a Commissioning Group or local council, and believe we have incorrectly or inaccurately recorded you work we would be happy to receive new information and will update our records accordingly. Please get in touch with the Campaigns team by emailing campaigns@epilepsy.org.uk or calling 0113 210 8800.

Thanks!

PLEASE SHARE AND TALK ABOUT THIS REPORT ! 

 

Categories
epilepsy news

Brain on Fire , an extract from the book by Susannah Cahalan

Link from The Guardian (Sun 20th Jan, 2013):
http://www.guardian.co.uk/books/2013/jan/13/susannah-cahalan-brain-fire-extract

Brain on Fire: ‘Blood and foam began to spurt out of my mouth’

She was 24 when she began to suffer terrifying seizures. In this extract from her new book, she describes the first such incident

Susannah Cahalan, photographed in Union City, New Jersey. Photograph: Mike McGregor for the Observer
Susannah Cahalan, photographed in Union City, New Jersey. Photograph: Mike McGregor for the Observer

After a series of uncharacteristic outbursts, episodes of pins and needles, nausea and migraines and incidents of irrational behaviour, Susannah suffers a seizure while sleeping…

Brain On Fire - BookAs Stephen later described the nightmarish scene, I had woken him up with a strange series of low moans, resonating among the sounds from the TV. At first, he thought I was grinding my teeth, but when the grinding noises became a high-pitched squeak, like sandpaper rubbed against metal, and then turned into deep, Sling Blade–like grunts, he knew something was wrong. He thought maybe I was having trouble sleeping, but when he turned over to face me, I was sitting upright, my eyes wide open, dilated pupils but unseeing.

“Hey, what’s wrong?”

No response.

When he suggested I try to relax, I turned to face him, staring past him like I was possessed. My arms suddenly whipped straight out in front of me, like a mummy, as my eyes rolled back and my body stiffened. I was gasping for air. My body continued to stiffen as I inhaled repeatedly, with no exhale. Blood and foam began to spurt out of my mouth through clenched teeth. Terrified, Stephen stifled a panicked cry and for a second he stared, frozen, at my shaking body.

Finally, he jumped into action; though he’d never seen a seizure before, he knew what to do. He laid me down, moving my head to the side so that I wouldn’t choke, and raced for his phone to dial 911.

I would never regain any memories of this seizure or the ones to come. This moment, my first serious blackout, marked the line between sanity and insanity. Though I would have moments of lucidity over the coming weeks, I would never again be the same person. This was the start of the dark period of my illness, as I began an existence in purgatory between the real world and a cloudy, fictitious realm made up of hallucinations and paranoia.

From this point on, I’d increasingly be forced to rely on outside sources to piece together this “lost time”.

As I later learned, this seizure was merely the most dramatic and recognisable of a series of seizures I’d been experiencing for days already. Everything that had been happening to me in recent weeks was part of a larger, fiercer battle taking place at the most basic level inside my brain.

The healthy brain is a symphony of 100 billion neurons, the actions of each individual brain cell harmonising into a whole that enables thoughts, movements, memories or even just a sneeze. But it takes only one dissonant instrument to mar the cohesion of a symphony. When neurons begin to play nonstop, out of tune and all at once, because of disease, trauma, tumour, lack of sleep, or even alcohol withdrawal, the cacophonous result can be a seizure.

For some people, the result is a “tonic-clonic” seizure like the one Stephen witnessed, characterised by loss of consciousness or muscle rigidity and a strange, often synchronised dance of involuntary movements – my terrifying zombie moves. Others may have more subtle seizures, which are characterised by staring episodes, foggy consciousness or repetitive mouth or body movements. The long-term ramifications of untreated seizures can include cognitive defects and even death.

The type and severity of a seizure depend on where the neural dysfunction is focused in the brain: if it is in the visual cortex, the person experiences optical distortions, such as visual hallucinations; if it is in the motor areas of the frontal cortex, the person exhibits strange, zombie-like movements and so forth.

Along with the violent tonic-clonic seizure, it turned out I had also been experiencing complex partial seizures because of over-stimulation in my temporal lobes, generally considered to be the most “ticklish” part of the brain. The temporal lobe houses the ancient structures of the hippocampus and the amygdala, the parts of the brain responsible for emotion and memory. The symptoms from this type of seizure can range from a “Christmas morning” feeling of euphoria to sexual arousal to religious experiences. Often, people report feeling deja vu and its opposite, something called jamais vu, when everything seems unfamiliar, such as a feeling of alienation I’d in the office bathroom; seeing halos of light or viewing the world as if it is bizarrely out of proportion (known as the Alice in Wonderland effect), which I experienced prior to a disastrous interview with America’s Most Wanted host John Walsh; and experiencing photophobia, an extreme sensitivity to light, such as visions I had in Times Square. These are all common symptoms or precedents of temporal lobe seizures.

A small subset of those with temporal lobe epilepsy – about 5% to 6% – report an out-of-body experience, a feeling described as being removed from your body and able to look at yourself, usually from above.

There I am on a gurney.

There I am being loaded into the ambulance as Stephen holds my hands.

There I am entering a hospital.

Here I am. Floating above the scene, looking down. I am calm.

There is no fear.

When I regained consciousness, the first thing I saw was a homeless man vomiting just a few feet away in a brightly lit hospital room. In one corner, another man, bloodied, beaten, and handcuffed to the bed, was flanked by two police officers.

Am I dead? Anger at my surroundings welled up inside me. How dare they put me here. I was too incensed to be terrified, and so I lashed out. I hadn’t felt like myself for weeks, but the real damage to my personality was only now bubbling to the surface. Looking back at this time, I see that I’d begun to surrender to the disease, allowing all the aspects of my personality that I value – patience, kindness and courteousness – to evaporate. I was a slave to the machinations of my aberrant brain. We are, in the end, a sum of our parts, and when the body fails, all the virtues we hold dear go with it. I am not dead yet. I convinced myself that a technician who may have flirted with me when I had my MRI scan was clearly behind all this. I am dying because of him, because of that lab technician.

“Get me out of this room now,” I commanded. Stephen held my hand, looking frightened by the imperiousness in my voice.

“I will not stay in this room.”

I will not die here. I will not die with these freaks.

A doctor approached my bedside. “Yes, we will move you right away.” I was triumphant, delighted by my newfound power. People listen when I speak. Instead of worrying that my life was out of control, I began to focus on anything that made me feel strong.

A nurse and a male assistant wheeled my bed out of the room and into a nearby private one. As the bed moved, I clutched Stephen’s hand. I felt so sorry for him. He didn’t know I was dying.

“I don’t want you to get upset,” I said softly. “But I’m dying of melanoma.”

Stephen looked spent. “Stop it, Susannah. Don’t say that. You don’t know what’s wrong.” I noticed tears welling up in his eyes. He can’t handle it. Suddenly the outrage returned.

“I do know what’s wrong!” I yelled. “I’m going to sue him! I’m going to take him for all he’s worth. He thinks he can hit on me and just let me die? He can’t just do that. No, I’m going to destroy him in court!”

Stephen withdrew his hand swiftly, as if he’d been burned. “Susannah, please stay calm. I don’t know what you’re talking about.”

“The MRI guy! He hit on me! He didn’t catch the melanoma. I’m suing!”

The young resident interrupted me mid-rant. “This is something you might want to look into when you get home. If you need a good dermatologist, I would be happy to recommend one. Unfortunately, there’s nothing more we can do here.” The hospital had already conducted a CT scan, a basic neurological exam, and a blood test. “We have to discharge you and advise that you see a neurologist first thing tomorrow.”

“Discharged?” Stephen interjected. “You’re letting her go? But you don’t know what’s wrong and it could happen again. How can you just let her go?”

“I’m sorry, but seizures are fairly common. Sometimes, they just happen and never happen again. But this is an emergency room and we can’t just keep her to see. I’m sorry. My advice is to see a neurologist first thing tomorrow morning.”

“I’m still suing that guy!”

The doctor nodded patiently and departed to address the gunshot wounds and drug overdoses that awaited him.

“I have to call your mom,” Stephen said.

“You don’t have to do that,” I insisted, my voice mellowing as I returned, almost instantly, to my old self. Manic episodes can fade away as quickly as they arise. “I don’t want her to worry.”

Mom was a worrier by nature and I had tried to spare her the full story of what was happening to me so far.

“I have to,” he insisted and coaxed her home number out of me. He stepped into the hallway and waited two interminably long rings before Allen, my stepfather, picked up the phone.

“Hello,” he said groggily in his thick Bronx accent.

“Allen, it’s Stephen. I’m at the hospital. Susannah had a seizure, but she’s doing fine.”

In the background, my mom shouted: “Allen, what is it?”

“She’s going to be OK. They’re discharging her,” Stephen continued.

Despite my mom’s rising panic, Allen maintained his composure, telling Stephen to go back home and sleep. They would come in the morning. When he hung up the phone, my mom and Allen looked at each other. It was Friday the 13th. My mom felt the foreboding and she began to cry uncontrollably, certain that something was seriously wrong. It was the first and last time she would allow herself to succumb completely to her emotions in the frightening months that followed.

EXTRACT 2: Susannah Cahalan’s recollections of her illness were far from reliable, so in order to write Brain on Fire she had to draw on the memories of friends and colleagues, and other material, such as hospital CCTV footage and a journal she kept during her hospital stay. Watching and reading back this material was an unsettling experience for her.

I insert a silver DVD marked “Cahalan, Susannah” into my DVD player. The video begins. I see myself at the centre of the screen, peering into the camera’s lens. The hospital gown slips off my left shoulder and my hair is stringy and dirty.

“Please,” I mouth.

On the screen, I stare straight ahead, lying on my back as rigid as a statue, my eyes the only feature betraying the manic fear inside. Then those eyes turn and concentrate on the camera, on me now.

Fear of this sort is not something we typically capture in photographs or videos of ourselves. But there I am, staring into the camera as if I’m looking death in the face. I have never seen myself so unhinged and unguarded before and it frightens me. The raw panic makes me uncomfortable, but the thing that truly unsettles me is the realisation that emotions I once felt so profoundly, so viscerally, have now completely vanished. That petrified person is as foreign to me as a stranger and it’s impossible for me to imagine what it must have been like to be her. Without this electronic evidence, I could never have imagined myself capable of such madness and misery.

The video self hides her face under the covers, clutching the blanket so hard her knuckles turn white.

“Please,” I see myself plead on video again. Maybe I can help her.

During my third hospital stay my true moment of awakening occurred; I began keeping a diary, started reading again, and first expressed the desire to understand what had happened to me. Perhaps because the diary provides physical evidence of my budding self (I can literally read the thoughts of that wounded Susannah), I can in essence begin to remember what it was like to be her, unlike the earlier Susannah from my paranoid diary entries before the hospital, who was more like a figment of a shadowy memory, so distant that she might have been a character in a horror movie. Yet the person I read about in my recovery diary is childlike and prosaic, unlike that umbral pre-hospital self who could, even at her most obscured, be eerily illuminating. Yet, there are surprising similarities between this diary and the journals I kept during junior high school. In each, there’s a stunning lack of insight and curiosity about myself. In place of deep thought, there are dozens of passages dedicated to my body (weight gain in the recovery piece and lack of breasts in the junior high journal) and silly, petty issues of the day (hating hospital food versus fighting with frenemies). I sympathise with this vulnerable, budding Susannah, as I do that pre-teen version of myself, but she is still not entirely me, as I am now.

Extracted from Brain on Fire: My Month of Madness by Susannah Cahalan, published by Particular Books, £16.99.