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).
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Better futures for young lives with epilepsy
Young EpilepsySt Piers Lane, Lingfield, Surrey, RH7 6PW
Tel: 01342 832243Fax: 01342 834639Email: [email protected]
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: [email protected] youngepilepsy.org.uk
Follow our tweets: twitter.com/youngepilepsy
Check out our Facebook page: facebook.com/youngepilepsy
Watch us on YouTube: youtube.com/youngepilepsy
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Download our free app youngepilepsy.org.uk/app
Better futures for young lives with epilepsy
Young Epilepsy Helpline01342 832242 (Monday – Friday, 9am – 1pm)[email protected]
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