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  1. DeanD

    Tinnitus Worse After Going to a Concert without Earplugs, COVID-19, Earwax, ETD

    I think you've hit the nail on the head. Our collective experiences in the real dark world of living with this condition show that 99.9% of the 'professionals' really have no idea. There is no science by which they speak and no proof of what they say. They will deal with mild sufferers 99% of...
  2. DeanD

    @ErikaS - it's great you don't need to come on here much anymore and getting on with your life :)

    @ErikaS - it's great you don't need to come on here much anymore and getting on with your life :)
  3. DeanD

    @ErikaS - I went for an allergy test and it came back with lots of things, I'm ruling them out...

    @ErikaS - I went for an allergy test and it came back with lots of things, I'm ruling them out, it's making some difference but depends what it does over time. At the moment its as much as the tightness in throat and breathing issues after swallowing as much as the swallowing - particularly the...
  4. DeanD

    @ErikaS - thanks for the reply. I think possibly vagus but the ENT and Neurologist I have spoken...

    @ErikaS - thanks for the reply. I think possibly vagus but the ENT and Neurologist I have spoken to are clueless on the subject and they're not pursuing it. I have tried 3 neurologists and 3 ENTs. In the US I just went to Urgent Care, not a specialised consultant. I've spent close to $4000 in...
  5. DeanD

    I'm trying to do this too in my 40s, it isn't easy! - I think sometimes finding someone with...

    I'm trying to do this too in my 40s, it isn't easy! - I think sometimes finding someone with this condition would make things soooo much easier
  6. DeanD

    Get 'Behind the Scenes' Insights from Tinnitus Research Conferences

    @Hazel, I'm following on from another thread on Tinnitus Talk, but from time to time, case studies and tests seem to be carried out by researchers using scans and EEGs on different patients with and without tinnitus looking for biomarkers to distinguish how tinnitus is impacting the brain. What...
  7. DeanD

    Tinnitus News

    I reached out to a couple of clinicians who published papers or results on tinnitus tests which linked closely to my own experience (constant changes of tinnitus during sleep patterns) but rarely received a reply. I will though go look through those who have tested using EEGs and suggest that...
  8. DeanD

    Tinnitus News

    Comparing different people (sufferers and non-sufferers) using EEG and MRI is a good analytical test, but I have never seen a test which takes the same patient who suffers with reactive tinnitus and then carries out an EEG (MRI is difficult as there is loud noise throughout the test acting as...
  9. DeanD

    Intermittent Tinnitus and Taking Clonazepam to Prevent a Loud Tinnitus Day?

    I damn hate the naive stupidity of audiologists at times! What do they think we do, sit around making this shit up. If they listened to the patients every once in a while without treating every one who complains as a 5-year-old or 90-year-old, one day we may be heard.
  10. DeanD

    Why Do Our Ears Crackle When Swallowing?

    No, I don't think so. I can cause this crackling with a very slight tense of what feels like my eardrum, although it may be my Eustachian tube. There would be no pressure change I don't think of that action. My swallowing is very restricted. I have explained it as tight, weak, and also a...
  11. DeanD

    Why Do Our Ears Crackle When Swallowing?

    I feel it's more eardrum-related, yes. I can initiate it myself by tensing 'something,' which feels like it's within my ear but at the same time lifts the soft palate - and mimics swallowing or trying to pop your own ears. I experience it a little less when swallowing food, but marginally. I...
  12. DeanD

    Terrible Hyperacusis Caused by COVID-19 Vaccine

    It's not surprising, considering Pawel Jastreboff doesn't know what to do. Unfortunately, everyone's experience is different, so I don't think anyone can really and truthfully give you a recommendation for you personally. Getting worse after trying something isn't a great sign, but whether it's...
  13. DeanD

    Transcranial Stimulation Treatments (rTMS & tDCS & tACS)

    Until there is a real test that shows tinnitus and its severity, companies will continue to exploit the market looking to make as much cash as they can. The self-proclaimed hype and press releases (which, unfortunately, some are hitting mainstream) about 'amazing new treatments' by way of a CBT...
  14. DeanD

    Tinnitus After 1 Hour of Loud Concert at Home (Taylor Swift: The Eras Tour)

    If it's hearing loss as a result of the acoustic trauma, he 'may' prescribe steroids, but it depends on how long ago the trauma happened. Then, he will most likely send you to an audiologist for hearing aids. I guess the question is, if they did find hearing loss, what do they do? Hearing loss...
  15. DeanD

    I Consider Myself Healed from Reactive Tinnitus and Hyperacusis by Calming Down My Nervous System

    Can I ask how your tinnitus came about - was it stress-induced, or was it through an acoustic trauma? Did you experience hearing loss, or has your hearing always been good?
  16. DeanD

    Hyperacusis, As I See It

    The merit is sharing information that may provide help to the sufferers on here. Aren't other sufferers on here entitled to the best shot with a recommended consultant rather than the typical gaslighting and lack of awareness with consultants many of us experience?
  17. DeanD

    Hyperacusis, As I See It

    I have been through the NHS system twice. My experience is different. ENTs hear 'tinnitus' and are not particularly caring. They simply carry out tests to look for an underlying condition, which, of course, is all they can do. Never was I then referred to audiology. Times have changed. Ten...
  18. DeanD

    Hyperacusis, As I See It

    It sounds as if you had an amazing experience randomly finding the right medical people. I wish we all had such success. I've seen a number of so-called experts, and not one has mentioned nerves, magnesium, Ginkgo biloba, etc... It's a shame we do not have a list of the names of the amazing 1%...
  19. DeanD

    Tinnitus and Very Windy Beach

    No, he means more likely temporary - i.e. a temporary spike. Most spikes often return to baseline after a couple of days, or reset themselves during sleep.
  20. DeanD

    Reactive Tinnitus and Flying on an Airplane

    I guess it depends on where you're flying to and who you're flying with. As the Airbus A380 is such a large plane, I guess it's really used commercially for the long haul - do you need a connecting flight? I have flown on the Boeing 777 and Airbus A320 jet - although the Airbus A380 (upstairs...
  21. DeanD

    Reactive Tinnitus and Flying on an Airplane

    I know you were contemplating the Airbus A380. I flew that a week ago and was on the upper deck. It's quiet. Surprisingly quiet. I didn't measure the dB, but it was quieter than the Boeing 777.
  22. DeanD

    Botox, Tenotomy and Tympanic Neurectomy for Noxacusis

    Thanks for the feedback. I saw another ENT last night and got him to listen to the crackle (as I can voluntarily induce it, along with swallowing). He tried to convince me it was normal. I also may have expected issues flying if this was Eustachian tube-related, but I don't seem to have a...
  23. DeanD

    @ErikaS - I asked for a swab test, and they found staph a and strep (I don't think Im...

    @ErikaS - I asked for a swab test, and they found staph a and strep (I don't think Im symptomatic) but I was given Prednisone and Amoxycillin but these made my throat worse so had to stop taking them. Im trying now to push for an MRI despite my ears (been trying to hold off) If I were to end...
  24. DeanD

    @ErikaS - Ive seen three neurologists. None of them mentioned vagus, but on the back of your...

    @ErikaS - Ive seen three neurologists. None of them mentioned vagus, but on the back of your thoughts I suggested to them. Two dismissed it out of hand, the third during an EMG said 'don' t think so but its almost impossible to test for' and this was at the infamous London Neurological Hospital...
  25. DeanD

    Hi @ErikaS - Im glad you're back getting on with life again, and saw in a recent post you've...

    Hi @ErikaS - Im glad you're back getting on with life again, and saw in a recent post you've returned back to school which is great! Unfortunately things are only getting worse and Im back on soft foods only. I managed to fly to US, but tbh this dysphagia is costing me everything
  26. DeanD

    My Dad's Tinnitus Success Story — From a Loud Flute Down to a Hiss Heard in Dead Silence

    This, 100%. Anyone with existing tinnitus should have their earwax removed with a curette. The benefit of a reduction of risk of an ear infection using microsuction is simply not worth it.
  27. DeanD

    Tinnitus After 1 Hour of Loud Concert at Home (Taylor Swift: The Eras Tour)

    Unfortunately, you won't find the answer to this question here, or at least not for yourself. I have had mild to moderate tinnitus for 44 years and have regularly worn headphones without a problem. However, I had microsuction that made the. w I can't wear headphones. This is 18 months ough the...
  28. DeanD

    My Dad's Tinnitus Success Story — From a Loud Flute Down to a Hiss Heard in Dead Silence

    It was an audiologist who put me here in the first place, either by negligence or a lack or knowledge - probably both. I already had (moderate) tinnitus, and my ears had been almost fully blocked for 10 years. When you think about it, here's a guy with pre-existing tinnitus, that hasn't heard...
  29. DeanD

    Botox, Tenotomy and Tympanic Neurectomy for Noxacusis

    It's possible it's the Eustachian tube. I can voluntarily bring this noise on by tensing 'something' in my ear, which raises the soft palette. Prof. Bance saw that one at least. Mine happens every swallow, and I can bring this on with a tense for 14 months now. The only time it goes away is...
  30. DeanD

    Botox, Tenotomy and Tympanic Neurectomy for Noxacusis

    Are you still getting the crackle when you swallow? I am, and I saw Professor Bance about this - along with other symptoms. He could hear the crackle too when he put a microphone in my ear or throat, so it wasn't just me internally that could hear it. In fact, anyone that puts their ear up to...
  31. DeanD

    How to Manage Video Calls at Work with Tinnitus and Hyperacusis?

    Depends. The Calmer earplugs are easy to wear in a work setting as they do not reduce decibels or volume, only higher frequencies. They aren't really noticeable and doesn't affect speaking or listening. FX Sound has been installed on my work laptop because of this, and again aids with reducing...
  32. DeanD

    How to Manage Video Calls at Work with Tinnitus and Hyperacusis?

    If you're anything like me, the harsh speaker sound can cause problems. Mine still isn't great, but I feel I have managed to reduce the effect with the following three things: 1. Buy a decent speaker rather than deal with the laptop sound. I have a Marshall Stanmore 2 (not perfect, but...
  33. DeanD

    My Dad's Tinnitus Success Story — From a Loud Flute Down to a Hiss Heard in Dead Silence

    I am going to hold on to the hope in that story, but you do wonder how many people with severe tinnitus go back to seeing their audiologist regularly for them to know whether it's getting worse or better. Once you have it bad, there's generally little need to revisit unless it's for ear...
  34. DeanD

    Internal Vibrations: Would an EEG and a CT Scan with Contrast Help Give Answers?

    I'm so sorry you are having to deal with all that. Unfortunately I couldn't say it's got any better. Whether it's got any worse is difficult to say. It's been a long 18 months. The tinnitus is still variable daily, and still reactive. I am trying to carry on, just been flying and travelling...
  35. DeanD

    Internal Vibrations: Would an EEG and a CT Scan with Contrast Help Give Answers?

    No problem. No, the EEG was silent. It was over a year ago I had it but I don't remember any noise. I have had a number of CT scans in the past year, some with contrast, and no, I don't remember the contrast affecting my tinnitus.
  36. DeanD

    Internal Vibrations: Would an EEG and a CT Scan with Contrast Help Give Answers?

    I do get this, yes. I don't think it's all the time, but certainly I do get internal vibrations. I have had an EEG and CT scans (across various parts) but no one has said they have found the vibrations, although it wasn't something I specifically pointed out. Personally for me, I think the...
  37. DeanD

    @Kiyomi - thanks, Ive been fighting this dysphagia for a year now. Seen 20 consultants, every...

    @Kiyomi - thanks, Ive been fighting this dysphagia for a year now. Seen 20 consultants, every test, nothing shown so they won't offer treatment. Zero compassion. Lost 50kg.Liquid food only at best. It's a nightmare.
  38. DeanD

    Reactive Tinnitus and Flying on an Airplane

    It was fine. You'll never know though until you do it.
  39. DeanD

    Reactive severe T is so much easier to deal with than dysphagia. Never knew or could even...

    Reactive severe T is so much easier to deal with than dysphagia. Never knew or could even imagine that, until I got both.
  40. DeanD

    Semicircular Canal Dehiscence Can Cause Pulsatile Tinnitus and Is Linked to Anxiety

    I thought there was surgery available for SCDS? I've had a couple in the past year, CT scans are relatively quiet and probably do not exceed 50 dB. I have put off MRIs for a year but need to have one done in a couple of months.
  41. DeanD

    TU Delft & Prof. Dirk De Ridder — Bimodal Stimulation Device for Treating Tinnitus

    Perhaps reactivity and hyperacusis is where it works best. I had a neurologist appointment who did deduce (theory mind) that reactiveness is a neuroplastic change in the brain as a response to auditory changes. This response continues until, one would assume, neuroplastic changes again to...
  42. DeanD

    Owner/CEO of the Kansas City Chiefs Seen Wearing Foam Earplugs (Incorrectly) at the Super Bowl

    He may have pulled them out to speak in to the microphone. Occlusion effect in any earplug is crazy. No way I could do an interview with foam earplugs deeply inserted. He may just be a sensible guy taken precautions. Doesn't mean he has tinnitus, hyperacusis or sound sensitivity.
  43. DeanD

    @HopeForAll96 - not great unfortunately. No mine never really did go down to be honest. People...

    @HopeForAll96 - not great unfortunately. No mine never really did go down to be honest. People certainly get more used to it after a period of time, and some it does reduce, it just hasn't as of yet for me.
  44. DeanD

    @Heal82 - sounds like a possible tempor tympani muscle contracting, or myoclonus, this sounds...

    @Heal82 - sounds like a possible tempor tympani muscle contracting, or myoclonus, this sounds like a fluttering or maybe a banging on the ear. Mine is more a crackle, like rice krispies crackling in the ear every time I swallow or voluntarily lift my soft palette, or tense the eustachian tubes
  45. DeanD

    @Jammer - I have no GP, and no doctor to speak to. I either go along with the NHS standard MRI...

    @Jammer - I have no GP, and no doctor to speak to. I either go along with the NHS standard MRI scan - or pay privately to speak to a consultant and carry out a private open MRI (cost about £1000 or $1200)
  46. DeanD

    @Jammer - my hospital will only do a closed MRI, but this is due to budget constraints. My other...

    @Jammer - my hospital will only do a closed MRI, but this is due to budget constraints. My other option is to pay privately for an open MRI and have the hospital review the results. I assumed it would provide the same resolution but perhaps not based on your answer.
  47. DeanD

    @Heal82 - what noise do you have? I have a cracking (like whip crack) every time I swallow, and...

    @Heal82 - what noise do you have? I have a cracking (like whip crack) every time I swallow, and has been this way for over a year now. An ENT said it happens as the soft palette lifts when I swallow - but why the noise happens he had no clue (and considered one of the best ear ENT surgeons in...
  48. DeanD

    Need to go for an MRI. Been putting it off but can't now. Reactivity is a concern. Anyone tried...

    Need to go for an MRI. Been putting it off but can't now. Reactivity is a concern. Anyone tried an open MRI?
  49. DeanD

    Hi @Heal82 - tbh I'm not sure if it's ETD or not. I get some pressure build up but that's just...

    Hi @Heal82 - tbh I'm not sure if it's ETD or not. I get some pressure build up but that's just one of many symptoms. I do have dysphagia though (swallowing difficulty) and some TMJ too. The dysphagia is often worse than than the tinnitus.
  50. DeanD

    From Darkness to Light, How I Recovered from Tinnitus & Hyperacusis

    @billie48, your positive posts are what gave me hope in my early days. You mention that you now cruise. Have you ever measured the dB rating inside a cabin? I'm trying to travel again despite severe reactive tinnitus (and more issues caused by whatever triggered off this tinnitus), and I have...
  51. DeanD

    Tinnitus Week 2024: What Should Your Neighbor Know About Tinnitus?

    For the media to give tinnitus any attention, it is going to take a lot, or a couple of high profile, bad news cases in quick succession on the subject of tinnitus - which is the only true way attention is really spread and gains traction. Often, the only time the media is involved is through...
  52. DeanD

    Why Does Alcohol Seem to Reduce the Severity of My Tinnitus? Coincidence or Not?

    This is an interesting thread and shows how food, drink, supplements, medication, etc., have different effects on our tinnitus, as mine spikes when drinking alcohol. This happens almost instantly (within thirty minutes) and happens everytime. It would stand to reason that alcohol would reduce...
  53. DeanD

    Lenire — Bimodal Stimulation Treatment by Neuromod

    Do you remember where you read this? Genuinely interested.
  54. DeanD

    Lenire — Bimodal Stimulation Treatment by Neuromod

    Although you only have to read through the hundreds of success stories on here to see that hyperacusis symptoms typically reduce or disappear around the 12-24 month stage - usually without using Lenire. Potentially placebo.
  55. DeanD

    Augmentin Caused a Tinnitus Spike

    @Scott T, sorry to reopen an old thread, but do you still have Achalasia? Did you end up with POEM surgery? I've also heard that Cialis can help with this?
  56. DeanD

    My Tinnitus Has Got Much Worse • TMJ/Bruxism for 3 Years • Now Insomnia, Cervical Pain, Headaches

    I was only diagnosed a week ago and have to wait until April to see a TMJ specialist and a fitting for a mouth guard. Out of curiosity, if you poke your jaw out far, does it increase your tinnitus, just add a temporary high pitch 'whine' for a bit, or nothing at all?
  57. DeanD

    My Tinnitus Has Got Much Worse • TMJ/Bruxism for 3 Years • Now Insomnia, Cervical Pain, Headaches

    I'm sorry you're going through this. I have just been diagnosed with TMJ, which came on after the tinnitus - as I guess many of us start clenching and grinding with this condition. Do you feel it was the tinnitus that led to the TMJ - and does the muscle relaxants do anything for the tinnitus...
  58. DeanD

    Reactive Tinnitus and Flying on an Airplane

    It was an Airbus A320 jet. I don't really remember there being many announcements. There must have been of course but they mustn't have been too bad as it is not something I particularly remember (and would ordinarily be sensitive to stuff like that) - you also have announcements at the...
  59. DeanD

    Reactive Tinnitus and Flying on an Airplane

    Mine was considered a short haul flight, and on a short haul plane in a 3-3 configuration. 70 dB in air, 85 dB on takeoff and landing. In air it was no louder than a car journey - which I have measured too. In fact I personally found the plane slightly less bothersome than a car journey - and I...
  60. DeanD

    Reactive Tinnitus and Flying on an Airplane

    In theory upstairs would be a bit quieter as it's further away from the engine - but in reality I flew outbound in the first row - and return I was right above the wing (hadn't noticed) and my decibel meter showed exactly the same dB read out. It's marginal at worst. Why wouldn't you try a...