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ClusterHeadache|TheMigraineTrust

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MigraineFactSheets

ClusterHeadache
Clusterheadacheisararetypeofheadachethataffectsabout1to2peopleinevery1,000.Itisoneofthe
mostpainfulconditionsanindividualcanexperience,describedasexcruciatingandevenmore
debilitatingthanmigraine.Thisfactsheetaimstogiveyoukeyinformationonclusterheadache,its
managementandtreatment.

Whatarethesymptoms?
Thesymptomsofclusterheadacheareverytypical.Thepaininyourheadisalwaysunilateral(one
sided),althoughforsomepeoplethesidecanvaryfromtimetotime.Thepainisusuallycentredover
oneeye,onetempleortheforehead.Itcanspreadtoalargerareamakingdiagnosisharder.
Duringaboutofclusterheadachethepainisoftenexperiencedatasimilartimeeachday.Theheadache
oftenstartsatnightwakingpeopleonetotwohoursaftertheyhavegonetosleep.Thepainusually
reachesitsfullintensitywithin5to10minutesandlastsatthisagonisinglevelforbetween30and60
minutes.Forsomepeoplethepaincanlastfor15minutes,forothers3hourshasbeenknown.Itthen
stops,usuallyfairlyabruptly.
Youmayexperiencetheheadpaineveryotherdayduringabout,orupto8timesperdayduringabad
cluster.
Inabout80%ofpeoplewithclusterheadachethebouts(orclusters)ofheadpainlastfor4to12weeks
onceayearoftenatthesametimeandoftenintheSpringorAutumn.Itmaythendisappearforseveral
monthsorevenyears.Thisisknownasepisodicclusterheadache.Thereasonforthisseasonaltimingis
notcompletelyknown,althoughitisoneofthekeyaspectsofdiagnosisandmayinvolveabrainarea
calledthehypothalamus.Theremaining20%ofpeopledonothavethesepainfreeintervalsandaresaid
tohavechronicclusterheadache.
Peoplewithclusterheadacheareusuallyunabletokeepstillduringanattackandoftentrytorelievethe
agonisingpainbypacingtheroomorwalkingoutside,sometimesevenbangingtheirheadsagainstawall
untilthepainsubsides.
Othersymptomswhicharecharacteristicofclusterheadacheareablockedorrunnynose,andonthe
samesideoftheheadasthepain,adroopingeyelidandwateringandrednessofoneeye.Manypeople
alsoexperienceaflushedorsweatingface.

Whocangetclusterheadache?
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Clusterheadachecanstartatanyagebutmostcommonlystartsinyour20sorolder.Youarenotlikely
togrowoutofclusterheadache,althoughasyougetolderitislikelythatthepainfreeperiodsbetween
boutsofclusterheadachewillgetlonger.
Approximately1in20peoplewithclusterheadachehaveafamilymemberwhoalsohasthecondition.
Unlikemigraine,itismorecommoninmenthanwomen(byfivetosixtimes).Itisalsomorecommonin
heavysmokers.
Aswithallformsofheadache,clusterheadacheoccursinchildrenbutitislesscommonthaninadults.

Obtainingadiagnosis
Thereisnospecialtesttodiagnoseclusterheadacheandsoyourdoctorwillneedtotakeaverydetailed
historyofallyoursymptomsinordertomakethecorrectdiagnosis.YoumaybereferredforanMRI
scantoruleoutothercausesforthepainstartingsuddenly.
Youarelikelytobereferredtoaheadachespecialistinahospitalorheadacheclinic.Thisisbecausethis
isarareconditionwhichGPorfamilydoctorsdonotoftentreat,notbecauseitisdangerousorlife
threatening.

Whattriggersclusterheadache?
Alcoholisonewellknowntriggerofclusterheadache,oftenbringingonthepainwithinanhourof
drinking.Ifyouhaveclusterheadacheyoushouldnotdrinkanyalcoholduringaclusterperiod.Oncethe
boutisoveryouwillbetodrinkalcoholagain.
Asignificantnumberofpeoplefindthatstrongsmellingsubstancessuchaspetrol,paintfumes,perfume,
bleachorsolventscantriggeranattack.Duringanepisodeofclusterheadachesyoushouldtrytoavoid
thesethings.
Somepeoplefindexerciseorbecomingoverheatedwillbringonanattack,soagainavoidingtheseisthe
bestadviceduringabout.
Researchhasshowedthatheavysmokersareatanincreasedriskofdevelopingchronicclusterheadache
sogivingupsmokingorcuttingdownisworthconsidering.

Treatment
Whilstthereiscurrentlynocureforclusterheadache,thetreatmenthasbecomemuchmoreeffectivein
thelast10years.
Acutetreatmentisusedtostopthepainonceithasstarted.Treatingclusterheadachecanbetricky
becausethepainbecomesextremelysevereveryquicklyusuallywithin10minutes.Thusthekeyto
treatingclusterheadacheduringanattackisspeedtoreducetheexcruciatingpainasfastaspossible.
Ordinarypainkillersthatyoucanbuyoverthecounterarenotusuallyeffective,asthepainofcluster
headacheistoointenseandtheytaketoolongtowork.
Oxygenisoneofthesafestwaystotreatclusterheadache.Youneedtobreathetheoxygeninata
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rateofbetween7and12litresperminute.Thetreatmentusuallystartstoworkwithin15to20
minute.Forsomepeopletheattackisdelayedratherthanstoppedaltogether.
From1February2006,newregulationswereintroducedonthewayoxygenisprescribedanddelivered
topeopleshomes.Uptothistimepeoplewithclusterheadacheobtainedtheiroxygencylindersfrom
theirchemistusingadoctorsprescription.
YourdoctorwillnowneedtosendaHomeOxygenOrderForm(HOOF)tooneofthe4companieswho
hasthecontracttodeliveroxygeninyourarea(listatendoffactsheet).Youwillalsoneedtocompletea
HomeOxygenConsentForm(HCOF),enablingthesuppliertoreceiveinformationaboutyouin
accordancewiththeDataProtectionAct.
IfyouarealreadyusingoxygenyourGPcancompletetheHOOFformwhenyouneedarepeat
prescription.Ifyouaretryingthetreatmentforthefirsttimeyoumayneedtobereferredtoaspecialist.
Itisworthaskingthedoctortostatethattheoxygenisforclusterheadachesothatthesupplierknowsa
highflowregulatorisneededtoensureyougettheoxygenattherequiredrate.Thecylinderswillthenbe
deliveredwiththecorrectregulator,masksandanyotherequipmentyoumayneed.Ifyouhavequeries
onyoursupply,eachcontractorhasahelpline(detailsgivenatendofthisfactsheet).
WhenthelocalcontractorhastheHOOFformyoucanringthemdirectlytoreorderthecylinders.These
shouldbedeliveredwithin3workingdays.
Sumatriptaninjectionshavebeenfoundtoreducethepainwithin10minutesduringanattack.In
generaltabletsarelesseffectiveifyouhaveclusterheadachebecauseofthetimetheytaketo
work.
Sumatriptanandzolmitriptannasalspraysdohelpsomepeoplealthoughtheonsetofaction
maybeslowerthantheinjection.
Preventativetreatmentisusedtotryandstoptheattackfromstartinginthefirstplace.Thereisafar
widerrangeofpreventativetreatmentsavailablenowthanintherecentpast.Youwillneedtotakethe
preventativetreatmentwhentheclusterperiodstartsandcontinueforabouttwoweeksafterthebouthas
ended.Youwillneedtostopthedrugsgraduallyandrestartthemifanewboutbegins.
Themostcommonpreventativetreatmentsare:
Verapamilprescribedforclusterheadacheasresearchhasshownthatadailydosecanbeeffective
inbothepisodicandchronicclusterheadache.Youwillprobablyneedtoseeaspecialistina
hospitalorclinicifyouareprescribedthisdrug,becauseyourheartwillneedtobemonitored
regularlyusinganECGmachinewhilstthecorrectdoseforyouisestablished.
Methysergideiseffectiveinepisodic(shorttermbouts)ofclusterheadachebutneedscautionin
thetreatmentofchronicclusterheadacheasyoushouldnottakethisformorethansixmonths
atatime.
Lithiumatalowdosecanbeeffectivealthoughagainthiswillneedcarefulmonitoring.Itismore
effectiveintreatingchronicclusterheadachethanepisodic.
Corticosteroidsaregivenbecausetheyarefastacting.Theycanbeusedinashortburstfor2to3
weeksindecreasingamountsasafirststeptobreakthecycle.Theyareoftenusedalongsideother
treatmentswhichtakelongertowork.Corticosteroidsaremoreeffectiveforchroniccluster
headachetobreakthecycle.Ifusedforepisodicclusterheadache,whenthemedicationisreduced
theheadachescomeback.
Ergotamineisinfrequentlyprescribed.Itcanbehelpfulinreducingattacksatnightifyoutakeit
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atbedtime.
Topiramatehasrecentlybeenreportedtobeusefulinclusterheadache.
Aswithanydrugtreatmentyoumayneedtoworkwithyourdoctortodeterminewhatworksbestfor
you.Youmayneedtotryseveraltreatmentregimesbeforeyoudiscoverthebestoneforyou.

Futureresearch
Moreresearchneedstobedoneonwhattriggersclusterheadache.Asadvancesaremadeinfunctional
neuroimagingthisdebilitatingconditionwillbecomebetterunderstoodandsotreatmentswillalso
becomeeffective.

Usefulcontacts
OUCH(UK)(OrganisationfortheUnderstandingofClusterHeadache),PyramidHouse,956
HighRoad,London,N129RX.Helpline:01646651979.Website:www.ouchuk.org

Providersofoxygencylinders:
Regionscovered

Company

NorthWest,Yorkshire&Humberside,Leicestershire,Northamptonshire,Rutland,
Shropshire,Staffordshire,Trent,EastMidlands,WestMidlands,North,NE,NW Air
andCentralLondon,SouthWestPeninsula,Dorset,Somerset,Avon,
Products
Gloucestershire,WiltshireandWales

Helpline
Number

0800
373580

Bedfordshire,Hertfordshire,Essex,Norfolk,SuffolkandCambridge

British
Oxygen
(medical)

SEandSWLondon,Kent&Medway,Surrey,Sussex,ThamesValley,Hants&
IsleofWight

Allied
0500
Respiratory 823773

CountyDurhamandTeesValley,NorthumberlandandTyne&Wear

0808
LindeGas
202
UK
0999

0800
136603

Backtotop

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