Tinnitus: Dr Will Sedley 2 of 2 (subtitled)

what but I I'm more interested well i'm not i'm in fact i'm equally in both sides and I've got a few other thoughts that a bit too that it will share but one thing I'm interested in it should we should we be changing the way we organize our tinnitus services shoot its the present model of how health professionals look after tinnitus in the NHS is it right is it working could it could it do more and this is related to the research and it's also simply just related to ensuring that people are even before we crack tinnitus are we treating people in positions such as yourselves properly in the way you'd like to be treated so there's no right answer to these but any any feedback will be immensely and he answers to these will be immensely helpful for me so the first thing is who who have you seen about about your tinnitus how helpful have they been a health care professional eyes how helpful if they beam what do they do well what did they do badly and he makes me dr.

Welton it immediately places you cousin and Willie when I've talked all dear Bogut jerkin soon you'll be wishing you'd take he said you could he could do what tin thought you could send me up there we shall be wish me type rights yes ah yes that you're shall we hand the mic rounds if you could just mean so much cooking from me yeah yeah if you want to can I just do that and I put it this isn't a book anyone options anyone off asking a question just for the sake of everybody here it is trying to come up we'll just give you the microphone ask a question to get your answer and then go sit back down is that all right yeah so do you want to do it again let the maid of that in the work for the pnt cleocin the freeman you have to send your problem if you put be wish to take was a condo with a pudding and and what it's what how was that what you know what what did he make of that that was about four or five years ago and it's getting you to run for sure would right okay there's a worse until last time i seen you whilst of the things i'm sorry i couldn't fix it I take it it didn't get suddenly worse and never never go back sir so I suppose unit to paraphrase a bit disinterested or perhaps real it perhaps realistic any any other any other experiences of how you found health care professionals you've consulted yes I didn't come down that because it'll be are you gonna point you've got a mic in there notice that take tablets for blood pressure then I noticed on two of them the site if one of the side effects is ringing in the ears which I'm being picked up from my GP so I pointed out to the GP with the side effect worst is so then process of changing October again yeah right i don't know if it's a very used to yell research it could be a drug drug side effects are a very tricky thing okay particularly when you get into the small print ones because if you read that sir it's enough to put anyone taking off taking any medication if you sit down and read the full lists it can be very hard to know what are the one of the common ones and what isn't that yeah sometimes only only giving a trial of stopping it and seeing if it helps will will never tell you okay I wanted to share one experience I i I've seen the parent parents of a friend of mine who had seen it GP paid privately to see any NT surgeon who accused her of being mad she took a bottle look said why did you bring a bottle of water into the consultation that's not normal and in the end said I don't know what you're here for and it seemed to do her a lot of a lot of harm by it basically saying not only I can't help you but so but you will you know you're wasting your time and mine to come to come to me so I well that's an isolated one I wasn't sure if anyone hadn't encountered similarly if not if not if not hostile at least you know Dipity dip it maybe we can do things in a show of hands where do people feel if you feel like it being taken seriously by the medical profession by healthcare professionals you've seen who it okay yeah good good so I've got three in it and if anyone felt like they're lopping not been taken seriously good this is amazing yeah but is it because I've seen right now is fantastic it really hurt sorry sir i have opportunities now prob years pencil we see the first business or was horrendous it was the surgeon and garden water hospital yeah and then I went to my own GP pulses the first doctor doctor saw then give me I'm tripling and what I was a detective and rippling is Genesis and he didn't read little so I look that for a month and it was horrendous nice and i'm now obviously a different doctor and she's been asking fantastic circuit been so we see tell us okay so Mick mixed it makes this but the one who made it worse was trying taking it seriously and try to hell it was think I see if he was trying to help yeah yeah okay Brandon thank you well thanks everyone his is shared there so it's another slightly more technical ones I suppose our what specific ones if they were tennis as tinnitus specialist you could get referred to to see easily but who you knew couldn't offer you any medicine or treatment that would make the tinnitus get quiet or I'll go away but was just a specialist and could discuss it with you which would you would you want to have an appointment at the hospital to see such a person yes so show it show of hands for who would who would like to okay it's a certain certain probably at about three quarters here and then I heard at least once so hands up for no I heard at least what least one knowing it you know I think these are you know there's no there's no right answer to these I'm I'm not sure if I were you know was trouble while my tennis is what what what I think ever that's that's interesting and okay for all the people who said yes what would you be wanting to get out of such a consultation if you knew there was no treatment so to speak no shall I should i come round this is oh sorry okay this one to know as much as I could about the condition oh yeah great I would ask for advice on medication yeah okay so not knowledge advice on medication so I'm not trying to snap the camera back I just find when you go to the tinnitus clinic I mean in all the tinnitus therapist very calm got rid of your tinnitus just told you so enough yo what you makes you feel so you can get your life back it's very inspiring to hear who do you see it to the diner eat eat I wondered if it might be actually sir excellent valid and sure anyone anyone else 22 ok it's good I've got even more technical questions as well ok so that we might be able to do some of these in show of hands cuz I so when you first developed your tinnitus hamp hands up for who had heard of who who had heard of tinnitus who kind of thought are this is tinnitus yeah okay that's about four or five people and who had no idea what it was okay so would clear clear majority may be able to 221 split also okay okay then how who how long did it take you to consult well if you did to consult a doctor or other healthcare professional who the only anyone see someone within the first week so one in the first week first two weeks first month and keep your hands up if you said in any less time so it so wraps are probably more than half by by a month and then within the first two months few more okay okay and what about if not consulting a health care professional who read up did anyone read up on the internet about it within within the first week within the connected internet 22 years yes 30 years yeah don't know if there was it must have been a very rudimentary not a not a publicly accessible incident 30 years ago no no I not sure there wasn't at all i think that's true right ok and then oh sorry sorry oh you don't have to do this one last three minutes of audio left on this wiki okay right so subtle you've got tinnitus and it's such early days you don't have any you don't have any idea whether this is just going to so I'm really asking you to put yourself in the mindset of what you made of it then you have no knowledge of how anything's gone sins and then said okay well I can give you a treatment but I'm just trying to get an idea off so for a show of hands who would have in that position taken a treatment involving taking tablets yeah and this isn't it assuming you'd have no idea whether the 10 assists was just going to go away on its own accord okay so most people would take tablets what about having injections yeah what if what if you had to come into hospital so you've had your tennis us a week or two weeks you might have to come in have a day case admission to the hospital sit there on the unit all day show of hands for who would okay all right and what about it taking a medication weather weather weather daily tablets or or of another kind that might give you side effect like drowsiness concentration difficulties so still still fairly high okay that's very interesting to know and i think that's that's quite enough specific questions for me to come with any way but Sir can I just make a comment I I come at it from a different angle than that I had a tumor which caused the tinnitus so diagnosis was vital for me early on and that I was given a scam and I had to GPS I Boxton coxed with one was very cynical and said what your GP said go away live with it and the other one who was a female dep who was rather more younger and open-minded and said did it come on suddenly and with the tumor that that's very significant to the one thing you haven't got it in one day you have and she she got me the scam and the had a long-standing tomb and hand it out I forgotten the drifter what I was going to say so we were talking about it so the just just to summarize in case anyone didn't hear so the diagnosis was vital for you because your tennis it turned out to be to do with it caused by a tumor unassuming was this a acoustic neuroma Nesta village follow me yes yes yes and an early oh you had a GP who was dismissive but one who took it very seriously and said it's come on suddenly let's scan you and I guess yes found the chiller and have parents imagine a dismissive GP would have gone down try tablets trace exercise that but in my mind all those tumors are very very rare I'm grateful to that lady g.p who had the understand ending to think of the possible yeah and many and it's you know it's a fair point that you know these acute acoustic or auditory know achievers are the needle in the haystack but though there are many people who will say well if you have tinnitus that's just in one ear check check for it and you know a lot of people will will scan everybody and you know you do enough scans you do you do find a button see one or two people is in its ass tutor due to these very that's a very important point because we've we've been really talking about sort of this idiopathic or common or garden terraces but yeah there aren't there are those those significant minority as it were something really didn't I'd have gone down the wrong room 21 mind if the goals if you hadn't had it picked up I guess things would have would have progress with the hearing loss and tinnitus and tossed possibly other problems and I was just going to say when you're asking about injections and tablets and medication I think when it first starts everybody is so distress and if somebody said would you take this tablet and they thought it was going to cure yeah we'll just take anything yeah all of it yeah you're working that's a really good point and actually because my my group my gmail knows that I'm interested in tinnitus because it's easy to my emails and the banner always says take this put pill or potion for tinnitus miracle cure I've never clicked on any of them but there's a lot of snake oil merchants out there and that's a good point and it's actually very interesting to know that it's not just the chronicity because I could almost expected that one year they might have said well when it was just there for a week I thought so it'll go away and then the distress has built up but if interested in actually the you know the distress in sort of upset and everything of it was right right there from the start so that it's very interested and you can sort of thing you gone mad a bit at first because legs active like average a bit about like sort of schizophrenia people hearing voices and things like that when you've got a sort of like Sam going on you think well had I got this and before you go to the Usher oh my god yeah and it's in it and that's a really good point cause tinnitus is technically a hallucination and everybody worries about hallucinations we see a lot of people who get music as well I think that's probably underreported the more complex it is the more you're worried that you'll be told you're mad or committed to some kind of institution or but banned from this or that which is not true but you know it's a it's a real worry that's one a lots of people share isn't it I think this should turn to get a bit more seriously because it's not classed as a disability and there are some people it can be really stressful I completely agree on the Uni you have it every parts of the spectrum from shrugging it on with it to you know cannot enjoy anything anything in life and the distance is completely dominated by us so you better get wakin up by the tinnitus welling in the middle of the night like that are we short with a shock no it sort of all right no no but I'm once once i wake up and then today it's late isn't it so it's very difficult to get back to sleep hmm is she due to go till you want sir well i have is in my right ear and sorry i don't do today but seven years ago i was told how about a wireless arm law yeah in there and it's thought I don't get a full night's sleep food helps you know so yeah I don't have any left da but out of the blue I kind of booming noise right it's just just now and then isn't that right any to any time or just when you're falling asleep or oh it's not every day but can go by and suddenly out of the blue but boom you know and as I was getting treatment from the Freeman yes cool but it gave me a pain in my and a doctor said get rid of this plug it was right what relevance is it whether you've got it in one year or two cuz a lot of doctors do ask that question yeah now had it in one year for a long time but over the region six months it's now when the other ear yes good one it's Edith yeah yeah it's enough it's quite relish being Jeff wife enough having it in one and the definite answers together it's a real it's a real double whammy insult to injury isn't it I mean I think that the reason doctors is her sorry Allah God to your justice the I think the reason some of the doctors think from a diagnostic point of view it comes back to what we're saying about tumors on the on the auditory nerve that if it's one purely one-sided they think all hang about is this due to a brain or you know central nervous system cause like a tumor and it mean in reality only even only a very small minority of cases in one ear are due to that I'm not sure if it's ever really been looked at actually whether you can get it in both ears even if you've only got something in one ear I I don't know if enough is known but I think I think that's what they're thinking whether there's a rationale to it said I don't know well the curiously I only I'm one side of tinnitus where the tumor was and I had a subsequent elimination to cut the auditory nerve to try and stop the tinnitus it's actually made the tinnitus worse but I find when I'm lying in bed at night I get to notice in both ears and it's as if being horizontal claw and it you can almost feel it traveling around the bones of your skull into the other rear and it does it sound ridiculous position yes I think about everything everybody's set up until now son sensible but that I'm no I mean tenant tinnitus is very sensitive to position changes pressure changes in the air and the whole head and neck area and the balance organs this so there's a lot of work going into what they call cross-modal inputs in tennis is from the balance system from the head and neck from the feeling system from the muscular system and in any of these things can feed into it cause it exacerbated so it it's quite common for position movement for pressure changes jaw problems net problems any of these things it'll just changes in position to to change the tinnitus experience so there are you that you don't sound too mad at us I think somebody's horrible experience the other night I've never had this before the only had it once and which to assess was so bad I couldn't find them I've tried to lie down I was leaving sick we do we need to do we were things spinning or like you had any vertical or anything the moon was what I was just like weird it was just a weird one off thing I had a sit-up for about an hour and then I was already applied in it was just like Edison weird it was just so you know I don't know if anybody else to stop there I'm yeah I know yeah he put one take I was gonna say I'm I meet him I'm hasn't got enough experience to know the full range of things but just look you forget a very wide-ranging it's zero well you've got you've got to like that why am i giving birth yes I'll help us to me that if I lie flat it seems to be worse and then I'll set up in bed and put pillows drop himself full so Morris sitting up and it's quite it does hell yeah I mean you wonder whether it could be anything to do with pressure changes yeah it's certainly certainly people with high high pressure in and around the brain classically reports a sort of bilateral whooshing tinnitus that goes with the pulse but in May that that's often worse online and it could be that even just the physical and pressure changes the you know in and around the brain that that just just tips things have any tests being done in like hyperbaric chambers and so your pivot effect hype is a hyperbaric chambers I think it has looked out for people with a cute sudden severe hearing loss I couldn't tell you what the results are but that some of the ENT surgeons when they see people will use hyperbaric or high-flow oxygen with the thought that it's a compromise in the blood supply to the cochlear that causes the hearing loss and that that might help more of it survive I'm not sure of the results but I haven't heard of it in long-standing tin it is only in that acute setting does anybody know why you get them the feelings in your ear fullness in air and everything like that what causes all that that's a good question and I've wondered this could certainly a number of people with with tinnitus reports a foot a fullness a physical sensation you know touch tactile sensation in the air and sometimes even pain I've not I've not quite understood it other than that we know there are these rich cross-modal links between the sort of the feed the bodily feeling the hearing and other organs and so we know that tinnitus gets fed into by all these other things maybe maybe it feeds out and makes sort of it's physically attributed to the here but it's I think it's an interesting question I'm not aware of a good you know a scientific answer to us and I've noticed a and a lot of people of here mentioned the same thing that you reasonably happy with it ended asst and then you have a good rest a good sleep and Tsuruya where governess worse than love it after a good rest that seems converse Detroit of business sphere and why why it should why that why that should happen I can sort of clutch at some straws of theories but I don't think we you know we haven't settled what is it what is it that makes a good day at a bad day and actually that's it's a really exciting question because I mean there's a range I know from talking to a lot of people some people the tennis is want a very much a level other people get real ups and downs and you thought if even if you couldn't make it go away if you could find a way of getting it at a good day all the time neither that's that's worth playing for oh you know my understanding it a great many cases so that it's one of the reasons for the studies have done had tried to see are there things in the brain that correlate with the day-to-day experience and tinnitus and was getting a hint of that in one of the study's been no good no good solid answer to that most of wants to do in fernley NV you you your work of the First Minister thank you and it's my privilege to be able to do some things and work on something that you know find interesting what is a very important cause well I wish you 190 in your head crafted me to be a connection between mood or stress levels on the intensity of the tennis that's been perceived and I know that must be davinder ought to try and magic it could be could be measured a lot of people reported so do you get the sort of common experience that tennis is worse under under high stress yes sir yes I mean I think it's been said in previous concepts sometimes when you go on holiday or during a particularly relaxed atmosphere you find that you're actually hardly aware of you to notice and there is certainly a connection our phone between certain days I have you know they're absolutely unbearable then other days I don't know why I should assess it so you were saying after snow it was a good idea to keep a diary because then you can get quite obsessed with utilities but Sardar gonna of days where you know it's Betty bro you know it's interesting and and this and then to worse under stress but then we've just been hearing sometimes when you're really well slept and well rested it can come on civilization yeah why it should why all these things should play should play parts I mean all of you know I think these are all that things these need to be built into our models and our understanding of tinnitus all all of these things because I think within if we can't explain these all and we're not really understanding tin assess properly but I've certainly I know people don't this and I think in the past they've even being a flipchart about which food or drinks actually trigger off but I certainly see a connection between alcohol cheese and my moods and perceptions of tinted house alcohol affect yours because I've come one or other holes all right for two or three frames I can lick it really chill it they really chills me out but I seem to then suffer the next year per go over to certain limit and cheese you seem so you got a fax from but then there's naught to do with you more loosely well um Sochi cheese is a funny one yeah it's good-sized Orient yeah well it does well yeah if anyone's ever heard of the these old monoamine oxidase inhibitor drugs they used to use them before we had modern antidepressants and you couldn't you couldn't eat cheese or Marmite or foods that contained a lot of tyramine or you'd get what they call the cheese reaction and you can become really unwell with it because as you say it does excite the break anyone familiar with cheese dreams yep I've certainly got vivid dreams with with cheese or Marmite and it's it's thought to be the tyra minutes it is a rate that used to watch boutique cheap you have cheese and a lot of red wine leave then made to you know to excite the imagination yeah so there's your it's a great manufacture and it will be interesting to see are these are these systematic are these individual differences are there are there systemic things that can further elucidate are our understanding and alcohols an interesting one so I've met at least one person who that innocence goes completely over it there seems to be a particular blood level and over that gone back below that well I haven't had any red wine for a few weeks now and just hasn't made a hit but the difference to my tuna no sir no sir it's not might as well i'll be i'll mention this did i carry on yeah i mentioned this to the jeep i have it had it because i was taking medication so I refrained from the red wine yeah but it didn't make any difference disposal it dry and dry January no smoking in October isn't it as alcohol in January yeah I mentioned this to the GPU said well he says you might kill you too and tennis but then you might end up with an alcohol problem yeah but she says baby words did it I mean but soon leaves this used to be a physical I've just seen that somebody I've just met for the first time there were this afternoon and we seem to have several things in common and gluten wonder actually seen that common when I become the previous groups is if I actually grew over 50 55 miles an hour it in my car I don't have to do with the tire tread noise but actually it is far worse and a bit if we go up to 70 it is unbearable so if I go on a lot card you and you say my son of bedfordshire my head is ringing for about a day afterwards because of this long drive they are more like coming five or six miles no there's not a physical thing is do you find your 10 assists get set off by being in a loud environment for like do you know deep do is worse the rescue it after were born a noisy mushrooms because this is real I mean there's there's a lot of people interested in tennis two subtypes and one of the earliest things that seems to distinguish categories of tinnitus is I mean this goes back to southern 1990 and just rip off and all of that buddy he would say one of the key distinctions as people whose tinnitus is suppressed by sound and those who who's exacerbated by it and the larger proportion it's suppressed by by other sounds but there is a very well-recognized group who get worse I've certainly met many such people in and I think it I mean it can be particularly troublesome because actually being in a louder have it being in a noise rich environment is often one of the best ways of getting rid of that or you know distracting from the tinnitus but it if that if you can't do that so you do end up in a very for a difficult situation I imagine but it sounds it sounds like your Bureau some summer into into that category probably I have both of those stages of us to the stage where fairly loud noise quenched related and also an eye on the stage where just the same as you if I travel fast in the car it obligates it so you can have bought yourself a set of earplugs if I trouble in a kind of trouble or what a fair way the car put the epoxy you know joined of the 1010 is an awesome doesn't it yeah excited that look outside of anything is that legal if you pay for it if you pay for them if you take them from the shop without paying absolutely I'm the opposite of this gentleman here I love nothing more than motorway driving at 60 or 70 and the loud buzz it absorbs my tortoise and I don't know I've got it and it's the only occasion I don't know I've got it yes I'm your other time yeah yeah I'm being proven right this is a rare occurrence for me my job was a heavy hooded driver 50 years I've grown over a million males and never had any bother until I went one deer to made GP he's give me a syringe quite regular and that churns the system over it stopped daughter in surgery he had to border the medical Sunday across the road and it was a new syringe more electrics arrange the unit that was a dear may I can get my records of taladon minute the day in a minute what does he amazed nice tuna tostada yea big subscriber to hear syringe I've done it done it once when my colleagues said please syringe my ear that was a I don't think it did anything that's we've got mange rebel fighters ehm so what oh yeah sorry had a thought you'd guess up yeah no no who was sorry thank you um it's just green by this lip it was going back to beating cheese and facility our latinas clinic at the frame I was advised not drink coffee because of the caffeine and team to drink basically for a drink um the caffeine gaming of tea coffee I prefer tea anywhere and not read cheese which I love no cheese so i faithfully carried on not for once and it didn't at the end of year didn't we the difference I think if if what will have learned anything is that were all different any of you some people and you know give a about the road noise is next step yeah it could well have been just as easy the stress of driving on the motorway anyway already here Lohse driving on the motorway it will have seven yet it to me it would be don't be living on your nerves quite honestly with cut continue concentrating all the time that wouldn't help I was also a sort of put skinny a pillow speaker who plugin with me mp3 sister whatever and landed me here for the tires I have a my greatest problem and I've had like the gentleman here about to this four more years that everything gold and it doesn't change one little I'll get very little secret nights and as I say go to the framed quite honestly didn't do one thing for me I can't the tinnitus group for quite a while and I stopped coming because I initially I found it tough because I realized that you're not the only one the synthesis of you is uberman and did the finish it didn't do nothing for me a thought so I haven't before royalty did you want this nervousness yeah my tinnitus was preceded with the hearing loss and many years type something new and this went on for a while I was quite worried with with everything the tinnitus came and it initially got louder and longer till it reached the point Mr Cameron at the ENT cream he perforated my left ear drum which alleviated the many old symptoms which I'll fight also if my tinnitus grunts ooh I'm going to feel unwell with seasick type symptoms if I paracetamol oops magically with that the tinnitus went and it became the major thing I've had the hearing therapist held at the free but the best help are hard with it reads my GP and he prescribed amitriptyline and at least us started sleeping and not being paranoid about yahoo and we've got and that's it's interesting to hear your experience being very much help average reptilian and another experience of being exacerbated by amitriptyline it it may be some of these big drug trials not delivering group-level benefits because it's mixing the people who do well with evil you badly and the people who don't respond in it you get this average average view although it doesn't do anything but actually you know is it's either is there something in this into e you know it comes back to the sub typing thing I know the there's big international effort to do work on solid subtyping of teenagers for these reasons I know the Nottingham group of doing a lots on lots on this but this is this is interesting in coming back to what what you said there about sort of being told to refrain from cheese and this and that so one one key thing is anything that doesn't work if you unless you like doing it do it because you know it's it's all it's all more ways in which you know begin to become owned by owned by the symptom and the condition as opposed to sort saying actually so you know I'm saying before if you the treatment you like if you think it helps you like taking it like doing it brilliant but otherwise you know otherwise you know as it's been said a lot we're all you know also different you've just got to do what what works for you and there's probably no one no one that knows your tinnitus better than yourself so it seems to be at a natural natural point to hand back to Derek yeah if there's no more questions on that fit with your Civic thank you you

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