Posted on Authorea 22 Jun 2020 — The copyright holder is the author/funder. All rights reserved. No reuse without permission. — https://doi.org/10.22541/au.159285601.19791350 — This a preprint and has not been peer reviewed. Data may be preliminary. oehrwt ainsorpeiu okhsbe bet eosrt h eysgicn mato olfactory of working impact and significant very 2012 the in demonstrate founded to was able disorders, been has and work smell previous by our affected patients people with for together charity UK the , clinics publicised Fifth specialist well in less common however typically are ol- cases those of cases and loss Amongst idiopathic causes and olfactory nature. Common post-viral in post-traumatic are idiopathic and nature. be to loss in appearing olfactory qualitative community and post-viral quantitative rhinosinusitis, chronic both infection include 9 coronavirus be Covid-19 disorders can of marker factory disorders a These as onset dysfunction. sudden of rise the witnessing 1-7 now are we Whilst rationale and Background further and patients these for Introduction burden significant a needed. is is and there strategies professionals coping mean medical and them from options interest for treatment of options for lack research therapeutic relative the of symptoms, lack olfactory the self- qualitative of common duration most The the was symptoms. smells their for other Meaning triggers with as nose odours having external reported the stating 58% Stimulating 61% and respondents despite of symptoms 4% method qualitative whatsoever. Only management their treatment phantosmia. for for no treatment 31% to successful received compared any 67% received in having symptom daily reported a as reported of was symptoms tried? qualitative have the they by measures self-help affected Findings and patients symptoms disorder for triggers olfactory both of including phantosmia experiences and specific parosmia the are What Question points Key 2020 22, June 2 1 Philpott Carl and self-management experiences Patient Disorders: Olfactory Qualitative ihnuooia iesssc sPrisnssmtmsclal,btwt bu 0 falcssi the in cases all of 10% about with but culpable, sometimes Parkinson’s as such diseases neurological with ffiito o available not Affiliation Anglia East of University tmysret eidu hta es netmtd5 ftepopulation the of 5% estimated an least at that us remind to serve may it , 1 oneDixon Joanne , 2 10 n ucnBoak Duncan and , h ulttv set fofcoydsresi h omo parosmia of form the in disorders olfactory of aspects qualitative The . 11 . 1 2 8 r ffce yolfactory by affected are Posted on Authorea 22 Jun 2020 — The copyright holder is the author/funder. All rights reserved. No reuse without permission. — https://doi.org/10.22541/au.159285601.19791350 — This a preprint and has not been peer reviewed. Data may be preliminary. eamdt eueba nrsossb aigtesre ieyaalbeaddet h membership the to due and membership. available international widely an survey and the population making UK a by both responses reflects in charity, of bias base reduce to aimed We Bias the declare to asked impact undertaken. were and self-management frequency Participants and intensity, triggers timing, any the sex. with explored and along questions Further age symptoms qualitative loss. including smell of demographics their for basic cause for underlying asked survey The variables SurveyMonkey. and platform as web-based sources/management themselves the Data internationally. declaring via country partic- charge and any Survey of from web aetiology. free participate wide the themselves could world of survey and the regardless self-selecting the phantosmia, were to access Participants and to access parosmia able with of were symptoms globally ipants the anyone by to affected open someone was survey The Participants and Setting her from comments inviting volunteers as charity’s well our as parosmia of It of One months. experience Newcastle. 6 links. her in of Sense of group period Fifth account support a the personal local for using a available provided internationally was also and media using (JD) online social developed ran was via survey questionnaire qualitative promoted survey The by A was affected partnership. people symptoms. patient of these clinician-expert managing experience and personal a with the living of survey in cross-sectional disorders a olfactory as designed was study The design Study Methods and Materials measures self-help qual- and the symptoms by for affected triggers patients both disorder including tried. olfactory phantosmia have of and they experiences parosmia specific of the symptoms characterise itative to aimed study This Objectives limited was epithelium phantosmia disorders olfactory for for qualitative the review of frustration for removal limited treatment systematic of very previous prescribed source be for a a to Evidence in provide studies disturbances clinician. 7 qualitative the to loss, and a patient olfactory to the quantitative presenting cases both than patients of so of 24% more in 12% Even phantosmia in and present 19% phantosmia in and parosmia dysfunction 34% olfactory reported in with presenting present patients setting was of clinical studies parosmia Previous that present. shown whilst have disorders affected those olfactory to of distress recovery of the for significance prognostic affected those on disorders 15 nsm forerirwr,2yasatrteicpino u hrt,ormembership our charity, our of inception the after years 2 work, earlier our of some In . 17 oeptet r osvrl ffce htcnieainhsbe ie osurgical to given been has consideration that affected severely so are patients Some . 12,13 hltrcn nig hwta ulttv iodr a aeapositive a have may disorders qualitative that show findings recent Whilst . 18 . 2 12 16 14 . n vdnefrsl-epmaue appears measures self-help for evidence and hyd oee rsn atclrsource particular a present however do they Posted on Authorea 22 Jun 2020 — The copyright holder is the author/funder. All rights reserved. No reuse without permission. — https://doi.org/10.22541/au.159285601.19791350 — This a preprint and has not been peer reviewed. Data may be preliminary. htsepwsm nyecp.Isatdt oiecransel ..cffe erl mk,coe food, cooked smoke, petrol, using coffee, clothes, Washing i.e. twentyfold. smells sewage certain and overpowering notice flesh so became to rotten that smell of started taste foul smell and I this weeks the smell coming bad intensified escape. the putrid softener only Over the fabric of my life. perfume, unaware daily was was my I sleep consume 44) and that (aged follow 2015 to in soon cold was bad extremely an suffered Having account Personal eating cues, visual was worst, and that and the memories some are lavender exercise, in smells changes, and nature cooking temperature thyme constant fatigue. symptoms, and or steam, and humidity rhinitis random left the increased situations, the tense leaves options reporting inhaling included or others eucalyptus other tea stimuli emotional with dried on the but stimuli, Comments using drinking any douching, plugs, nose. of and nasal the independent nasal as steam of in or smells the drops use tissue inhaling oil other the with was castor and described reported passages smells water 61% Several nasal other boiling that blocking in with 4). fact included (table nose the comments symptoms the the despite symptoms in their Stimulating 3), qualitative for (table their whatsoever. trigger method for treatment a self-management treatment no common successful received most any having the received reported having 58% reported and respondents phantosmia of than 4% (64%) Only constant symptoms be of symptoms to duration likely the of more and Self-management life was 65% of Parosmia in 59%. quality a sudden in years. higher as being fluctuating 40 associated reported as as over an reported being reported with to was it was 2) month which symptoms with (table 1 the phantosmia 1), from of for (table ranged onset 31% frequently to The more compared occurring impact. 67% as in reported symptom were daily parosmia of Symptoms symptoms of impact and Frequency percent Eighty years. 7 of results mean phantomsia. duration a Main reported of with 65% range years whilst The 40 parosmia CRS. to 88, with and month experiencing to PVOL 1 reported both 13 was olfactory respondents reported from post-viral disorders idiopathic of patients 26% ranged olfactory reporting and 4 qualitative participants 33% (PTOL) iatrogenic; reported of included loss 5% of participants olfactory age and post-traumatic for The (PVOL) 23% reported loss (CRS), male. aetiology olfactory rhinosinusitis were The chronic 39 17% 51. (IOL), and of loss female age were mean a 61 with participants, 100 the Of period. study the during data survey Descriptive the on information recorded participants 100 of total A Participants nature the data. to survey Due Results the set. reporting was in size utilised sample been no have experiences, only patient statistics capture descriptive to study, study the exploratory of an was this As Methods Statistical and size Study 3 Posted on Authorea 22 Jun 2020 — The copyright holder is the author/funder. All rights reserved. No reuse without permission. — https://doi.org/10.22541/au.159285601.19791350 — This a preprint and has not been peer reviewed. Data may be preliminary. n aigapstv prahwl upr ainso hi oeta ore orcvr ra es give members least hub at Newcastle or Sense recovery Fifth to from journey parosmia mechanisms.Feedback interest potential from coping an recover their find taking can on Therefore, and patient patients adapt either. recover a support slowly won’t that patient to will prove a approach time on that to positive them done say research a unable to more having is statistics be profession and any also aren’t medical should there the There equally that but effect. recovery understand no aid measure fully have potentially GPs and I can will monitor some that smell that medication and that medication normal specific supportive hear on my of be drugs. spent to months of aware should trial cost 6 awful 85% made GPs/Consultants on after is have be experience return save doesn’t I should it my and smell say They condition In your can progress. same ”If patients’ to.” I the patients However, their but likely with telling years, not people life. in 5 it’s clinical other of taken then and to quality uninterested have are spoken and may Consultants Having health It over and mental back. have! and in my medication I taste impacted case this – and prescribed seriously a recover be about which do read also people condition could Having some dreadful by taste. I a breathe. septum my if perforated help is improve a GP Parosmia helped to taking had my order this that of I noticed ask that in weeks time also to felt crusting 1-2 this I decided I the by After I manage. time but dislodging Gabapentin could patients. improve regarding and I to asthma US hard where started degree for the so constant a slowly used nose to things this was my as smell bear which bad nose blowing prove not drug the my to suppressed trial could in with evidence had returned spoke a no I it mucus who’d was was found called – there consultant it I explained over medication my about as He could this later successful was GP that Theophylline. days be my life more with of prescribed to would couple nothing my speak be it a was I I feeling recommended recommended Thankfully there and he and longer. and colleague - distraught any a taste down taste office broke and and from his totally smell smell suffering and repulsive my left was hysterical regain became I I see would I that to point I confirmed arranged . that if they I At me and Unfortunately, that another done. desperate tell dry days. for be so who be not became within very region not could my became seen I would the success To but this was nostrils in parosmia without but and My medication consultant me, worked. privately for much ENT appointment which consultant sinuses. so local an this explored of made a my Having GP none across clear my months. came medication and to conditions 6 I of head these Eventually in variety my interest avoided bleeds. an a on by took prescribed nose and home stand alongside who months at I when developed months was 3 suggested crusts even intensifying several for GP constant from over work one was smell GP off amazement the smell my stop bad was could saw This I I I above. that place family. mentioned only way and as my The a friends triggers over present. certain seeing such took odours avoiding or It in other out retch. no life me going were personal there make partner, and would my toothpaste work around using my being and affected revolting and all life were shampoo and deodorant soap, • • • • a’ iewt hscniin-hvn hsfu ml n at vr eodo h a sjs unbearable. just is day the of second every assaulted taste then most and was smell for and foul sensation/taste up, this unpleasant having that gave - an but condition me with this all replaced with tells I largely live Crushed, can’t GP was I me! no-taste My for examina- my hope’ where cursory it’s ’no life. foods. a issue was know my with there further I minutes that of a few life. me minor. by rest a of tell is the just then quality problem spent to my for my and tion affect uninterested this patients spectacularly seriously 75-year-old seemed with does with consultant his it suffer My dressings bland of but to so threatening most is e.g. life have of Life not taste problems might contact. health The personal I the flowers, that considering sea, leave. that depressing grass, something to cut is eating smelling have It of of I joy alien. of and for feel Loss - friends taste/smell juice. with chemical lemon out - serious vinegar go a to causes afraid suddenly alone, living when / 4 Posted on Authorea 22 Jun 2020 — The copyright holder is the author/funder. All rights reserved. No reuse without permission. — https://doi.org/10.22541/au.159285601.19791350 — This a preprint and has not been peer reviewed. Data may be preliminary. ru fptet aea ne edi em feetv ramns ie ht3%o u participants reported our otherwise of than longer 38% was study that our given. given in being seen treatments, symptoms treatment of effective no duration of mean treatments reported The terms half prescribed with in over for and need those base treatment unmet of unsuccessful review evidence an 29% systematic reported small have topical previous in very patients and A seen of a medications phantosmia. was antimigrainous group found with antiepileptics, al those specifically antipsychotics, of et phantosmia included 53% cases Reden that of in idiopathic by and management in months 10% study the 12 and the of PTOL of as average in in disorders an 14% qualitative dysfunction CRS, after of in parosmia olfactory the 28% prevalence of qualitative with the many (56%), of of reported PVOL as Recovery have with aetiology studies patients predominance the in Previous female for frequent accounting typical PTOL. most CRS the and and with PVOL idiopathic keeping with as in interestingly respondents but was studies participants other study in of our seen aetiology on and based demographics The members charity’s our of or experiences Interpretation believe examination the we symptoms physical reflect However, persistent no genuinely setting. more and study to have the self-reported survey work who of published were the nature those previously diagnoses the on be to The to responses due likely conducted aforementionedthe cases. membership was the more charity resistant testing to be The access olfactory more to have psychophysical generations. not are older tend do the perhaps also or affect online will and disproportionately not have respondents are to survey who likely and those is by This seen media. been have social not will survey the The and life symptoms. of their quality moderate symptoms, poor to stimulate Limitations do try a in to odours with evident patients external patients was whilst for treatment of but means effective group exist a or a triggers also treatment Many reveals are of mean factors health. they lack the mental two A given adverse these effect for years. of lasting potential 7 a combination was and The cohort patients this on 96%. in impact symptoms significant of a have duration can disorders olfactory Qualitative results Key Discussion n itr esrst nbeptet oaatadrcvrfo hs ialn itrin,i oeways some in distortions, This disabling them. these from for recover options and adapt therapeutic to of patients lack enable life the to of measures and quality dietary their professionals and on medical symptoms, impact of from significant duration a interest the has to of due lack them experience relative who the those for problematic remain disturbances Qualitative petrol, included al et one. Generalisability Pierre individual by an much study very a is in parosmia parosmia of experience eliciting chocolate immediate the and triggers their fruits beyond odorant perfumes, persist coffee, main symptoms tobacco, The whose patients contact. encapsulating therefore clinical and recruitment of source • hnsIcudtlrt eoe udnybcm nbet?Ad e,lk h efltidcts feel I indicates, leaflet anything! the taste like or ..occasionally, yes, . smell . And, And. couldn’t those I all to? extreme! when but unable the - off” become etc) ”better in suddenly broccoli was eggs, Weird I beef, I before, (coffee, odour!! that foods tolerate of unpleasant could to types akin I SAME several somewhat things for the - - have smells/ vomit unpleasant foodstuffs of and different extreme smell fairly sour by sharp, me the for itself manifests condition The 12,13 n h edakdrn u ebr ofrne n workshops and conferences members our during feedback the and 20 20 u outesecpuaearneo xeineadthat and experience of range a encapsulate volunteers Our . nftr,cnieainnest egvnt psychological to given be to needs consideration future, In . 5 15,20 u a eetthe reflect may but 16 lal this Clearly . 19 . 15 . Posted on Authorea 22 Jun 2020 — The copyright holder is the author/funder. All rights reserved. No reuse without permission. — https://doi.org/10.22541/au.159285601.19791350 — This a preprint and has not been peer reviewed. Data may be preliminary. al :Rsosst usino hnomaipc (n/%) impact phantosmia on question to Responses 2: Table (n/%) impact parosmia on question to Responses 1: Table the of structure Tables the to input providing and survey the inspiring for Hummel survey. Thomas Professor to Thanks Acknowledgements guidelines Strobe the with line in reported been has study This guidelines Reporting study. this for required was funding No Funding reported. None Interest of Conflict 4 3, 1, – Dixon Joanne 3 2, 1, – Boak 4 Duncan 3, 2, 1, criteria – ICMJE Philpott Carl the with conjunction options. in supportive resources indirect Authorship more and for options need the therapeutic of direct evidence of certainly terms is There in phantosmia. both of patients case these the for in tinnitus to akin perhaps nes?3 542 25 33 38 31 applicable 31 Not NO YES 29 27 44 26 9 applicable Not 65 NO 28 YES intense? occurrence? daily 51 a . . phantosmia. your Is 21 25 13 weight? 62 lose done) has day (or every to of you enjoyment causing your is on impact an having intense? occurrence? daily a . . parosmia. your Is 6 Posted on Authorea 22 Jun 2020 — The copyright holder is the author/funder. All rights reserved. No reuse without permission. — https://doi.org/10.22541/au.159285601.19791350 — This a preprint and has not been peer reviewed. Data may be preliminary. .PraV haK eduznM,e l oeta utsel-CVD1 sascae ihsevere with associated is COVID-19 - smell just than More al. et chemesthesis. MG, and Veldhuizen taste, smell, K, of Ohla impairment V, Parma dysfunction: Smell RL. 6. Doty P, Tabarsi A, COVID-19. European Khorram-Tousi for B, multicenter biomarker Mansourafshar clinical SMR, a a a Hashemian as ST, (COVID-19): dysfunctions Moein disease gustatory 5. and coronavirus Olfactory the al. of et forms DR, study. Siati mild-to-moderate and De of dysfunction CM, COVID-19 chemosensory presentation Chiesa-Estomba in of JR, Findings Association Lechien AS. Common symptoms. 4. DeConde influenza-like CE, : with Boone presenting and DP, patients Prajapati Anosmia in F, Covid-19 G. Faraji 39 Riu CH, Yan De 3. G, Deiana SARS-CoV-2 G, of Salzano for symptom Patients. recommendations LA, presenting and Vaira a series, case 67 as 2. literature, Anosmia the of al. management. review and et systematic assessment A K, clinical – Jumani workers healthcare D, in Chandrasekharan infection M, Lechner 1. 33 53 References symptoms provoke that Stimulants 4: Table nose spray the menthol/mustard/pepper through with in nose breaths 33 the deep Stimulating with nose balloon) the water Stimulating a with up nose blowing smells the if other Stimulating as with out nose pressing the while Stimulating shut nose movements one’s Head pinching mouth, one’s (closing Valsalva tried Measure participants by tried measures Self-help 3: Table u rhOtorhinolaryngol. Arch Eur Laryngoscope. syu hnoma E ONtapplicable Not NO YES 43 47 10 39 29 weight? 32 lose done) has day (or every to of you enjoyment causing your is on impact an having . . phantosmia. your Is 2020. i rvl3 5 15 61 25 (%) 2 Participants exercise Physical travel Air pressure air in Changes 17 Sneezing effect) (trigeminal smells Pungent nose the Flushing Smells Stimulant n ou leg Rhinol. Allergy Forum Int 2020. Rhinology. medRxiv. 00Acpe npress. in - 2020;Accepted 7 2020. 2020:2020.2005.2004.20090902. n ou leg Rhinol. Allergy Forum Int 2020. 20 (%) Participants Posted on Authorea 22 Jun 2020 — The copyright holder is the author/funder. All rights reserved. No reuse without permission. — https://doi.org/10.22541/au.159285601.19791350 — This a preprint and has not been peer reviewed. Data may be preliminary. 0 ireB alA arc ,DvdM itre drn ecpin nlsso eiso 6Patients 56 of Series a of Analysis : Have Odorant Who Distorted Patients M. for David Healthcare F, Effective Patrick Parosmia. to A, With Paul Barriers B, C. Pierre Philpott 20. S, Medrxiv2020. Carrie In. Disorders. J, Taste Dixon or D, Smell Boak S, treatment. Ball and 19. diagnosis perception: olfactory of Distortion D. Sciences. Leopold Chemoreception 18. for Association the of systematic Meeting a Annual Thirty-second . phantosmia: the Chemical long-lasting from Abstracts of of Management List 17. TS. Higgins JY, Ting qualitative of CC, significance review. Rabbani prognostic MZ, the on Saltagi study 16. A T. Hummel olfactory T, after Zahnert recovery A, dysfunction. olfactory Fritz olfactory relevant H, with Maroldt J, associated Reden is 15. Parosmia al. et disorders. M, Authorea2020. taste Damm kingdom. In. and M, training. smell United Sabha D, with the Liu Patients 14. need: in unmet disorders An olfactory CM. Philpott 2020;45(2):197-203. of SE, impact Erskine 13. The D. Boak dysfunction. 2014;39(8):711-718. CM, olfactory qualitative Philpott of presentation 12. Clinical taste al. and et smell S, specialised Heilmann Otorhinolaryngol. a Arch BN, with Landis experiences J, Frasnelli First 11. UK: the in Disorders Taste clinic. and outpatient Smell CM. Philpott 10. dysfunction. Welge-L olfactory A, on Switzerland]. Temmel and paper Austria M, Position Germany, Damm al. et 9. P, Andrews KL, Whitcroft potential 2017;54(26):1-30. T, predict to Hummel symptoms self-reported 8. of tracking Real-time al. et MB, Freidin COVID-19. AM, Valdes C, Menni 7. n ou leg Rhinol. Allergy Forum Int aueMedicine. Nature rhvso tlrnooy-Ha ekSurgery. Neck & Head - Otolaryngology of Archives 2010;35(7):627-644. ultno h oa olg fSren fEngland. of Surgeons of College Royal the of Bulletin u rhOtorhinolaryngol. Arch Eur 2004;261(7):411-415. 2020. 2018;8(7):790-796. se ,e l Ofcoydsucin.Eieilg n hrp in therapy and Epidemiology dysfunctions. [Olfactory al. et A, ussen ¨ HNO. 2004;52(2):112-120. 2007;264(2):139-144. 8 2005(2):107. 2014;96:156-159. hmSenses. Chem 2002;27(7):611-615. lnOtolaryngol. Clin hmSenses. Chem hnlSuppl. Rhinol Eur