A Brief Guide to Epilepsy and Higher Education

Better futures for students with epilepsy

How much do you know about epilepsy?1) Peoplewithepilepsyshouldalwaysavoidflashinglights.

True False

2) Youshouldrestrainsomeonehavingaseizuresotheydon’thurtthemselves.

True False

3) Youdon’talwaysneedtocallanambulancewhensomeonehasaseizure.

True False

4) Notallseizurescausethepersontobecomeunconscious.

True False

See page 10 for answers

What is epilepsy?Epilepsyisaneurologicalconditionthatmeanssomeoneispronetohavingrepeatedseizures.

Epilepsyaffectsover112,000youngpeopleintheUK.Itisestimatedthatapproximately15,000areinhighereducation.

What are seizures?Aseizureisasuddenburstofexcessiveelectricalactivityinthebrain,whichtemporarilyinterfereswiththewayitworks.

Theeffectsvary,butseizurescanaffectmovement,sensation,behaviour,memoryand/orconsciousness.

Theexactnatureofwhatsomeonemayexperienceduringaseizuredependsonmanyfactors,includingwhereinthebrainthesuddenexcessiveelectricalactivityoccurs.

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Seizure types Mostpeopleareawareoftheclassic‘tonicclonic’seizure.Theseinvolvemusclestiffeningandjerkingandalossofconsciousness.

However,thereareover40differenttypesofseizure.Theyaffectthebodyandconsciousnesstovaryingdegrees,althoughmostfallintotwomaincategories:

Focal seizures

• Onlypartofthebrainisaffectedbytheelectricalactivity.• Consciousnessmaybedisturbedorimpaired,orthepersonmay

remainfullyalert.• Thesymptomsexperiencedwilldependontheareaofthebrain

thatisaffected.

There are many types of focal seizures with a vast array of possible symptoms including:

• Achangeinemotions.• Afeelingofdéjàvu.• Problemswithspeech,

includingconfusedspeech.• Problemswithmemory.• Muscleweakness.• Confusion/wandering

around.• Tinglingorwarmsensation.• Feelingalimbislargeror

smallerthanusual.• Unusualorrepetitivebody

movements.• Sight-relatedissues.

Problems with sight

Tingling or warm sensations

Problems with speech

Tonic clonic seizures

Atonic seizures

Absence seizures

Generalised seizures

• Allofthebrainisaffectedbytheelectricalactivity.•Thepersonwillbecomeunconsciousoftheirsurroundings.

There are several distinctive generalised seizure types:

Tonic clonic seizures(usedtobeknownas‘grandmal’seizures)-Theperson’smusclesstiffen(tonic)andthenstarttojerk(clonic). Thepersonlosesconsciousness.Aseizurelaststypically2-4minutes.

Tonic seizures-Thepersonlosesconsciousnessandtheirmusclessuddenlystiffencausingthemtobecomerigid.Ifstanding,theywillfalltotheground.

Atonic seizures-Thepersonlosesmuscletone,causingthemtocollapsetotheground.Theywillalsoloseconsciousness,althoughthiscanbebrief.

Absence seizures(usedtobeknownas‘petitmal’seizures)-Theseseizuresresultinasudden,butbrieflossofconsciousness.Duringtheseizure,thepersonwillusuallystopwhattheyaredoing,stareblanklyandbecomeunawareoftheirsurroundings.Absencesareoftenmistakenfordaydreaming.

Myoclonic seizures-Theperson’smusclesbrieflyjerk(asiftheyhavehadasuddenelectricshock).Seizuresofteninvolveoneorbotharms,orthehead.Thereisabrieflossofconsciousnesswitheachmyoclonicjerk.

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Treatment of Epilepsy Thereareseveraldifferentoptionsfortreatingepilepsy,howeverthemostcommontreatmentmethodisantiepilepticdrugs(AEDs).

TheaimofAEDsistostopallseizuresorreducethemtoaminimumwithasfewsideeffectsaspossible.

How effective are AEDS?

Forabout70%ofpeoplewithepilepsy,AEDsworkwell.However,someAEDsworkbetterforcertaintypesofseizuresthanothersandfindingtherightAEDcanbealongandfrustratingprocess.

Side effects

NoteveryoneexperiencessideeffectsfromAEDs.Theycanalsosubsideaftertheirinitialintroduction.However,commonsideeffectsofAEDsincludes:

• Memory,learningandattentionproblems.• Drowsinessandlethargy.• Dizziness.• Coordinationproblems.• Doublevision.• Changesinmood

orbehaviour.• Increaseordecrease

inappetite.

“The thought of having a seizure in front of other people...it terrifies me! I don’t care that I have a seizure, I don’t care that I feel sick and I’ll go to bed. It’s just the actual embarrassment of having a seizure in front of people.” Josh (19)

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Epilepsy and Higher Education

Life in higher education

Manystudentswithepilepsyhavetheirseizureswellcontrolledbymedication.However,it’simportanttorememberthatepilepsycanbeunpredictable.Italsoaffectspeopledifferently,bothphysicallyandsocially.

Whilstmanyyoungpeopleareconfidentandhappytotalkabouttheirepilepsy,somefinditdifficultandembarrassing-particularly ifpeerslackawareness.

Telling friends

Studentswithepilepsyshouldbeawarethattellingothersabouttheirepilepsycanbevitalfortheirownsafety,aswellasthatof theirfriends.

Thiscanbedaunting.Friendsmaybealittleanxiousatfirst-itmaybetheirfirstexperienceofepilepsy.However,givingtheminformationcanreallyhelp.

“I was afraid it might freak my housemates out, but they were all really nice about it, which was good. I liked that.” Georgina (18)

Changes in lifestyle

Movingfromhometotheheadynewworldofuniversitylifeisoftenconsideredariteofpassage.However,foryoungpeoplelivingwithepilepsy,theimpactoflatenights,alcoholandincreasedstudypressurecanexposethemto‘seizuretriggers’.

Seizuretriggersarethefactorsthatcanmakeaseizuremorelikely.

Ifastudenthasseizuretriggers,theyshouldconsideradjustingtheirlifestyletoavoidthemasmuchaspossible.

Forexample:

• Gettingsufficientsleep.• Avoidingdehydration.• Beingsensiblewithalcoholintake.• Reducingstress.

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Education

Epilepsyismorethanjustamedicalcondition.SeizuresandAEDscanaffectmemory,concentrationandthewayinformationisprocessed.

Seizuresdon’tonlyaffectapersonatthetimeoftheiroccurrence.Recoveryperiodscanlastforminutes,hoursorevendays.Theremayalsobelonger-termeffectsonlearningandmemory.

AEDsmayalsocausesideeffectsthataffectlearning,suchas:

• Drowsinessandlethargy.• Slowerinformationprocessing.• Attentionandmemorydifficulties.

TheeffectsofepilepsyandAEDscanoftenbemisconstruedinyoungpeopleaslazinessordisinterest.Itisthereforevitaltoraiseawarenessamongsteducators.

Therealityisthatstudentsmaymisslecturesorneedtoextendassignmentdeadlines.Collegesanduniversitiesneedtobeawareandmakeprovisionforthis.Therearealsosupportoptionsthatcanreallyhelp,suchasnote-takers,mentorsortheuseofadictaphone.

“I’ve had bad seizures and have taken falls, so I’ve missed out on classes.” Mark (21)

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SupportItisimportantforstudentswithepilepsytoknowwhotheycantalktowhentheyneedhelp.

Thereisplentyofsupportavailableinhighereducation.However,findingoutwhatisavailableisn’talwaysstraightforward,butthesesupportservicesshouldbethefirstplacestudentscouldlook:

Disability support services

Disabilitysupportservicesareagreatplacetostartatmostcollegesanduniversities.Theycanhelpstudentswithepilepsytoaccesspracticalandfinancialsupport,suchastheDisabledStudentsAllowance.

Young Epilepsy

TheYoungEpilepsywebsitehasanentiresectiondedicatedtostudentsthatincludesinformationon:• Leavinghome.• Managinghealth.• Universitylifestyle.• Supportservicesinhighereducation.

youngepilepsy.org.uk/students

The National Union of Students (NUS)

TheNUSisagreatsourceofinformationforstudents.Itoffersarangeofadviceandcoversalltheissuesanystudentmayface.

nus.org.uk

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Test your Knowledge AnswersAnswers:

1) FALSE–Photosensitiveepilepsyonlyaffects5%ofthosewiththecondition.

2) FALSE–Thisismorelikelytoharmbothyouandthem.Itisbettertomoveobjectsoutoftheway,placesomethingsoftundertheirheadandlettheseizurerunitscourse.

3) TRUE –Itisnotalwaysnecessarytocallanambulance. (See when to call an ambulance below.)

4) TRUE–Dependingonthetypeofseizure,apersondoesnotnecessarilybecomeunconscious.Infocalseizuresapersonmaybefullyawareorcouldhavetheirconsciousnesspartiallyimpaired.

When do you need to call an ambulance?Ifsomeoneishavingaseizure,youshouldcallanambulanceimmediatelyifanyofthefollowingapply:

• Youdonotknowtheperson.• Youdonotknowifthepersonhasepilepsy.• Itistheperson’sfirstseizure.• Youareconcernedabouttheperson’sbreathing.• Thepersonhasinjuredthemselves.• Thepersonishavingaconvulsiveseizurethathasnotstopped

within5minutes.• Ifyouknowthepersonbuttheirseizurelastsfor2minuteslonger

thanisusualforthem.

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Publication No: 268

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© Young Epilepsy 2013

Young Epilepsy is the operating name of The National Centre for Young People with Epilepsy. Registered Charity No: 311877 (England and Wales).

Young Epilepsy Helpline01342 831342 (Monday – Friday, 9am – 1pm)helpline@youngepilepsy.org.ukText us: 07860 023 789

Better futures for young lives with epilepsy

Young EpilepsySt Piers Lane, Lingfield, Surrey, RH7 6PW

Tel: 01342 832243Fax: 01342 834639Email: info@youngepilepsy.org.ukyoungepilepsy.org.uk

Young Epilepsy is the operating name of The National Centre for Young People with Epilepsy. Registered Charity No: 311877 (England and Wales).

© Young Epilepsy 2012 Publication No:197

Young EpilepsySt Piers Lane, Lingfield, Surrey, RH7 6PW

Tel: 01342 832243Fax: 01342 834639 Email: info@youngepilepsy.org.uk youngepilepsy.org.uk

Follow our tweets: twitter.com/youngepilepsy

Check out our Facebook page: facebook.com/youngepilepsy

Watch us on YouTube: youtube.com/youngepilepsy

See us on Flickr flickr.com/photos/youngepilepsy

Download our free app youngepilepsy.org.uk/app

Better futures for young lives with epilepsy

Young Epilepsy Helpline01342 832242 (Monday – Friday, 9am – 1pm)helpline@youngepilepsy.org.uk

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