Epilepsy and You
Norman Delanty
Consultant Neurologist
Brainwave National Conference
10th September, 2011, Dundalk
Dundalk,, County Louth
Definition
Epilepsy defines a group of neurological
disorders affecting individuals of all age groups,
of varying and sometimes unknown aetiology,
characterised by recurrent unprovoked seizures,
or by one unprovoked seizure but with an
“enduring predisposition” to further seizures. It
may have significant consequences in terms of
adverse educational, vocational, and
psychosocial functioning, and physical
morbidity, especially in the one third of patients
with drug resistant epilepsy.
What is Epilepsy?
A group of disorders
“The epilepsies”
Recurrent (unprovoked) seizures
Many types and many causes
Often no cause can be identified
Affects all age groups and all walks of life
50 million worldwide
Six million in Europe
300,000 people diagnosed each year
Hippocrates, 400 B.C.
“It
seems to me that the disease is no more
divine than any other. It has natural cause
just as other diseases have. Men think it is
divine merely because they don’t
understand it. But if they called
everything divine which they do not
understand, why, there would be no end
of divine things”.
“The Spirit Catches You and You
Fall Down”
When Lia was about three months, her older sister Yer slammed the
front door of the Lees’ apartment. A few moments later, Lia’s eyes
rolled up, her arms jerked over her head, and she fainted. The Lees
had little doubt what had happened. Despite the careful installation
of Lia’s soul during the hu plig ceremony, the noise of the door had
been so profoundly frightening that her soul fled her body and
became lost. They recognised the resulting symptoms as quag
dabpeg,, which means “ the spirit catches you and you fall down”.
dabpeg
The spirit referred to in the case is a soulsoul-stealing dab
dab;; peg means to
catch or hit, and gaug means to fall over with one’s roots in the
ground, as grain might be beaten down by wind or rain.
The Spirit Catches You and You Fall Down. A Hmong Child, Her
American Doctors, and the Collision of Two Cultures
Anne Fadiman
Farrer, Strauss, and Giroux, New York 1997
“Falling”
“So little did it impinge on me that, as I got older, I refused to take
the most rudimentary precautions. I stayed up late and got up
early. I drank with abandon. This had bad consequences: I
collapsed at parties, I fell in showers and baths, I had seizures in
girlfriends’ beds that I wouldn’t hear about for months. Sometimes
at night after drinking I’d start having bouts of unconsciousness as I
was talking to someone. I’d give a little gasp and could feel myself
slipping out and then coming to in a few seconds later. This could
cause consternation and bafflement in the person I was talking to
and was, to me more disturbing than a total loss of consciousness
because I could see it happening and knew from experience that it
might escalate into a big attack”
Peter Sirr, The Dublin Review, Winter 20102010-2011.
What You Should Know
About Your Epilepsy
Type of epilepsy
Generalised or focal
Idiopathic or symptomatic
Types of seizures experienced
May be more than one seizure type
Usual seizure pattern and duration
Cause of epilepsy
Be informed about past and current medications
What Type of Epilepsy Do I
Have?
Generalised
Seizures arising from or involving “the whole brain at
once”
Focal
Seizures beginning in one part of the brain and
spreading, in variable fashion, to other parts of the
brain, or to the whole brain
What Type of Seizure(s
Seizure(s)) do I
experience?
Generalised
Tonic-clonic (“grand mal”)
TonicAbsence (“petit mal”)
Myoclonic (jerks)
Tonic/Atonic
Tonic/
Atonic (drop attacks, sudden falls)
Partial (Focal)
Simple partial
Complex partial
Tonic
Tonic--clonic
What is the Cause of My
Epilepsy?
Many causes,
understanding
improving
Unknown
Birth problems
Subtle abnormality of brain
development
Complicated febrile
convulsions
Meningitis / other brain
infection
Tumour
Tumour,, usually benign
Abnormal blood vessels
Stroke
Genetic
What Medications Am I
Taking?
Know the name
Trade name (Epanutin
(Epanutin,, Tegretol
Tegretol,, Keppra
Keppra,, Lamictal
Lamictal,,Trobolt…)
Trobolt…)
Generic name (Phenytoin
(Phenytoin,, Carbamazepine
Carbamazepine,, Levetiracetam
Levetiracetam,,
Lamotrigine,,Retigabine….)
Lamotrigine
Retigabine….)
Names may vary from country to country (Dilantin
(Dilantin,, Potiga
Potiga…)
…)
Know the dose
Know when started, and last time dose changed
Have written list of medications
Bring with you to doctor’s appointments
What are the Side Effects /
Potential Side Effects of my
Treatment?
Common side effects
Tiredness, dizziness, nausea, somnolence, headache
Drug specific side effects
“Silent side effects”
E.g
E.g,, adverse effects on bone health
Other potential important adverse effects
E.g
E.g,, potential effects on foetus in pregnancy
Interactions with other drugs
Discuss with your doctor and pharmacist
What Medications Have I
Been on in the Past?
Useful to neurologist when going to (first) appointment
Maximum dose
Any side effects / allergies experienced
Old notes / diaries
GP
Pharmacist
What Other Medications am I
Taking?
Doctor and patient may overlook
Important not to forget to mention
May be directly important to your epilepsy
Vitamins and supplements
“Alternative” or complementary treatments
What Puts Me at Risk For
Seizures?
Know, understand,
and respect these
May vary from
individual to
individual
Common themes
Flashing lights
Missed medications
Exercise
Excess tiredness
Other, individualindividual-specific
“Stress”
Preceding excess alcohol
use
Are My Family / Friends
Trained in Seizure First Aid?
Important topic
Be informed
Educational leaflets
Use of rescue medication
Buccalmidazolam (Epistatus)
Epistatus)
Sublingual lorazepam (Ativan)
Ativan)
Clobazam (Frisium)
Frisium)
Useful Websites
www.epilepsy.ie
www.pilepsycare.ie
www.patientslikeme.com
www.epilepsy.com
www.epilepsyfoundation.org
www.epilepsysociety.org.uk
Can I Drive?
New regulations December 2010
One year basic rule
Nocturnal seizures only
Provoked seizures
Medication withdrawal
Ask!
What New Drugs are
Available for Epilepsy?
New drugs for hard to control epilepsy
No cure
No one size fits all
Vimpat (lacosamide
lacosamide))
Zebinix (eslicarbazepine
eslicarbazepine))
Trobolt (retigabine
retigabine))
Can I Ever Stop my
Medications?
No definite broad answer
Decision needs to be individualised
Depends on many factors
Type of epilepsy
History of status epilepticus
How hard was the epilepsy to control?
What would be the consequences of seizure relapse?
The genie may not always go back in bottle…..
What Information Should I
Bring to My Neurologist?
My history
A family member or friend
MRI scan
Other relevant documents
Seizure diary
Medications
Other Questions / Issues
Might I be suitable for epilepsy brain surgery?
Might I be suitable for implantation of a vagal nerve
stimulator (VNS device)?
Am I at risk of SUDEP?
What Precautions Should I
Take if I am Travelling
Abroad?
Generally no problem with flying
Sensible approach
Plenty of rest before and after
Avoid alcohol and dehydration
Spare medication in separate bag
Plan medication timing when travelling to different time
time--zone
Advice re vaccination
Advice re malaria prophylaxis
Epilepsy
Summary
Information
entered to other
modules
displayed in
Epilepsy
Summary.
View
Medications
Can I Take Part in Epilepsy
Research
Generally - yes
Speak to your neurologist
Genetics research
Pregnancy Register – 1 890 320 820
Imaging research
Drug trials
Should I Take Part in Epilepsy
Fundraising / Advocacy?
Yes!.....
Support Brainwave
Epilepsy Research Ireland
Epilepsy Care Foundation
National Centre for Complex Epilepsy