Hello from England

Discussion in 'Introduce Yourself' started by UKBloke, Jul 8, 2019.

    1. UKBloke

      UKBloke Member

      Tinnitus Since:
      1991
      Cause of Tinnitus:
      Loud Music / family history
      Tinnitus has been a part of my daily for life for nearly 30 years. Although there's some family history of ear problems (Meniere's), I think my tinnitus was mostly self-induced - we musicians like to listen to things LOUD!

      I've been pretty much habituated for most of the time I've had tinnitus, however, the purchase of some rather powerful headphones, and a few irresponsible sessions wearing them has caused my tinnitus to take a dramatic spike in the last few months. It's become quite a problem again.

      When I was first diagnosed with the condition back in 1991, the doctor sent me for an X-Ray. The hospital said, everything's normal, gave me a masker and sent me on my way. The "care" back then seemed rather primitive. This time round, however, I can honestly say that my experience is completely different. Thank goodness for the Internet. Also, thank goodness for the existence of forums like this.

      I know tinnitus can send us to some very dark places. There are some heartbreaking stories. But I do remain optimistic; there seems to be much more mainstream attention to this dreadful condition these days, and ultimately, I do believe help is on it's way. Thanks to all who post - this is a very special forum.
       
      • Hug Hug x 1
    2. Michael Leigh

      Michael Leigh Member Benefactor Hall of Fame

      Location:
      Brighton, UK
      Tinnitus Since:
      April /1996
      HI @UKBloke

      You have had tinnitus a long time and from reading your post quite experienced in it. You already know what can make "noise induced" tinnitus worse, so just be careful when using your headphones and playing music. If you are not careful the tinnitus will get worse and no amount of treatment will be of benefit. Sorry to sound so sobering. Loud noise/sound and tinnitus do not go well together.

      The main thing that can make "noise induced" tinnitus worse is using headphones even at low volume. Although some people with NIT are not affected by headphones use. The fact that you are a musician could present a problem if when playing music the sound is too loud. Noise reducing earplugs can help. However, if external sound is too loud, it will pass through your head/skull, and transfer to your inner ear by bone conduction and spike the tinnitus. Sometimes the spike can lead to increasing the tinnitus to a new permanent level.

      The choice is yours whatever you decide to do. Although you have coped with tinnitus for 30 years. Please remember, this condition can extremely debilitating when it becomes severe and has no mercy for anyone that doesn't reduce their exposure to loud noise or headphone use. Once the tinnitus increases, it will rarely reduce to it's previous manageable level.

      You might find my posts in the links below helpful.

      I wish you well.

      Michael

      https://www.tinnitustalk.com/threads/new-to-tinnitus-what-to-do.12558/

      https://www.tinnitustalk.com/threads/tinnitus-a-personal-view.18668/

      https://www.tinnitustalk.com/threads/hyperacusis-as-i-see-it.19174/
       
    3. AUTHOR
      AUTHOR
      UKBloke

      UKBloke Member

      Tinnitus Since:
      1991
      Cause of Tinnitus:
      Loud Music / family history
      @Michael Leigh thanks for your reply. I had read quite a few of your posts over the past few weeks and am aware of your view regarding headphones, which I only use now at much reduced volume.

      That said, I'm interested to know, in terms of treatment, what's your view on the Lenire device, and various research coming out of the USA (Susan Shore etc)?
       
    4. Michael Leigh

      Michael Leigh Member Benefactor Hall of Fame

      Location:
      Brighton, UK
      Tinnitus Since:
      April /1996
      HI @UKBloke

      Thank you for letting me know that you have read some of my posts over the past few weeks, I hope that you found some of the information helpful, even though you have many years experience with tinnitus.

      As you know the Leniere device is something new and is creating quite a storm, as people are eager to know whether if can help reduce or cure tinnitus? I understand trials have taken place with favourable results. A few TT members have signed up Lenire/Neuromod and I'm in contact with one of them who will be starting the treatment soon. We will have to wait for any feedback from the people that try it. I am in favour of Neuromod and any treatment for tinnitus and hope it is a success.

      Tinnitus has been around for thousands of years and dates back to the Egyptians, when the first medical account of it was recorded. Tinnitus treatment has come a long way despite what some negative people say that there is no treatment for the condition. This of course is not true. TRT, CBT, medication, sound therapy, counselling all can help a person to have a better quality of life. These treatments are not a cure for tinnitus but remember, 19 out of 20 medical conditions cannot be cured thus far. I am a believer in habituation, it is real and does work but one has to have a positive mindset. I have written many posts on positivity because tinnitus is 90% mental. By this I mean, the way a person is able to cope with it daily as it's an integral part of one's thought process and emotions and cannot be separated from it them.

      Some people will settle for nothing less than a complete cure for tinnitus and will spend a lot of time being miserable. Going from forum to forum and other social media platforms, blaming the medical profession or their government for not finding a cure for tinnitus.

      I do not read up on tinnitus research and never heard of Susan Shore. I believe some of these people mean well but the vast majority have never experienced tinnitus. They have their medical qualifications and Phds, but to be honest, they have no experience of tinnitus other than what they have been told by tinnitus patients. These people are qualified physicians. With all due respect they know about the anatomy of the ear and are able to treat underlying medical problems within the ear and auditory system causing the tinnitus and that's where it ends. As I have said, tinnitus is 90% mental.

      When this condition becomes problematic and a person needs help, they will often find comfort and sanctuary talking to people that know the best ways to cope with tinnitus. This type of help can only be found through counselling with Hearing Therapist or Audiologist who's trained in tinnitus treatment and management. Many of these health professionals were either born with tinnitus or acquired it as some time in their life. Therefore, they will have an understanding of tinnitus and help a tinnitus patient in such a way that no doctor can. The other place of help is the tinnitus forum. Where there are usually people that have experience living with tinnitus. Their counsel can prove invaluable to someone that is having difficulty coping with tinnitus. As I have said. Medication, sound therapy, TRT and CBT also play a part and can help a person to have a better quality of life.

      Someone with "noise induced" tinnitus and uses headphones even at low volume, risks making it worse. The tinnitus only needs to spike once and usually it's game over. The tinnitus will increase to a new permanent level. As yet, I do not know of any treatment that can reverse this. For this reason I advise people that have noise induced tinnitus, not to use headphones and be careful of being around overly loud noise. By this I mean, attending nightclubs and concerts, where sound levels can be extremely high. Even wearing earplugs one is not completely safe. As I've mentioned in my previous post, about sound transfer passing through the head to the inner ear by bone conduction.

      All the best
      Michael
       
      Last edited: Jul 8, 2019
    5. AUTHOR
      AUTHOR
      UKBloke

      UKBloke Member

      Tinnitus Since:
      1991
      Cause of Tinnitus:
      Loud Music / family history
      Michael,

      Thanks for your reply. I've got to say, I'm slightly on the fence where the medical profession is concerned. It seems to me we're very good at plumbing and wiring, not so good at curing like you say. That said, there's a stack more information and positive research going on today than there was available when I was first diagnosed nearly 30 years ago, which is encouraging.

      There was one aspect of your post I wanted to question. You mention that noise induced tinnitus only needs to spike once and it's game over - new permanent high level. In your opinion, if this occurs, does that mean it's not possible to habituate to the new high level over time?
       
    6. Bobby B
      Fine

      Bobby B Member Benefactor

      Tinnitus Since:
      11/2015
      Cause of Tinnitus:
      long term NIHL and recent acoustic trauma
      @UKBloke
      Can you please elaborate on how you continued with music with tinnitus after 91?
       
    7. Daniel Lion
      Ape-like

      Daniel Lion Member Benefactor

      Location:
      SE Asia
      Tinnitus Since:
      2017
      Cause of Tinnitus:
      Noise trauma, hearing loss
      Hey UKBloke,
      Welcome aboard, sadly, but nonetheless... welcome.
      Hope you get some peace... a little bit of quiet and maybe one of the new therapies may help you. Bimodal neuromodulation, regenerative therapies, maybe a drug.
      Until then deep breaths, and easy does it.
      I’ll see you around the block.
      Daniel
       
    8. Michael Leigh

      Michael Leigh Member Benefactor Hall of Fame

      Location:
      Brighton, UK
      Tinnitus Since:
      April /1996
      HI @UKBloke

      If you wish to contact me then please use the @ sign and write my name: @Michael Leigh That way I will get a PM Alert. The only time I don't respond are people that I have placed on "ignore".

      You have asked an interesting question.

      I only deal with "noise induced" tinnitus because that is what I am familiar with. This type of tinnitus can be extremely complex. Irrespective of whether the tinnitus is noise induced or caused by an underlying medical problem, it will affect each person differently because we are all different.

      Through corresponding with many people over the years at tinnitus forums I have noticed that people with "noise induced" tinnitus are more likely to be adversely affected by headphone use even at low volume. People whose tinntius was caused by an underlying medical problem within the auditory system are not so easily affected by headphone use. I am convinced this has something to do with the way the inner ear, particularly the cochlea has been affected by exposure to loud noise. Perhaps it's one of the reasons so many people with "noise induced" tinnitus experience hyperacusis, an over sensitivity to sound. Most (but not all ) people with tinnitus caused by an underlying medical problem do not usually have hyperacusis.

      As I have said we are all different. Some people with noise induced tinnitus use headphones and are not affected. However, it is my belief there is always a risk of the tinnitus becoming worse. If the tinnitus spikes for someone that has NIT from using headphones, the tinnitus will usually (but not always) increase to a new permanent level. The people that I have corresponded with at tinnitus forums, email and those that have contacted me by telephone, have a very difficult time habituating again to their tinnitus after it has "spiked" from further loud noise exposure or headphone use.

      I speak from personal experience. In 2008 my tinnitus spiked after listening to my HI-FI late one evening. I was enjoying a Haydn symphony so much I turned up the volume and everything seemed fine. Went to bed by the next morning noticed my tinnitus was much louder and steadily got worse over the coming days and weeks. I returned to ENT for treatment and referred to Audiology for the second time to start TRT. It was 4 years of pure hell that is the only way to describe it. It was the lowest point of my life and something that I will never forget. I have written about this experience in my post: My Experience with tinnitus, in the Link below.

      It took 4 years for me to habituate for the second time but my tinnitus is not like it was before. Now it has huge fluctuations in intensity that ranges from: complete silence, mild, moderate, severe and can reach very severe levels. When the tinnitus is very severe and wont calm down, I take clonazepam, which will usually reduce it to a very manageable level or complete silence over 4 to 12hrs .

      It is possible to habituate to tinnitus after a sustained spike. I am not talking about the kind of spike that people randomly get that settle after a few hours or a day or two. I am describing the type of spike cause by loud noise or headphone use. This type of spike can be quite intense and unrelenting. Under these circumstances a person will most likely need professional help. A referral to Audiology to see a Hearing Therapist for treatment which comes in many forms.

      People that have noise induced tinnitus should stop and think. Do I really want to put myself in harms ways. One just has to peruse some of the many posts in this forum from people with NIT, use headphones and now regret it. Why on earth would anyone choose to take such a risk with their health and the misery that tinnitus can cause is beyond me. The same applies if one chooses to play music in a band or attends clubs and concerts. These venues can be extremely loud and earplugs even the best moulded types are no guarantee one is safe. As I have already mentioned transference of sound through the head to the inner ear by bone conduction.

      Loud noise and tinnitus do not go well together plain and simple. There are musicians that openly boast they have tinnitus which is loud, but they are still able to play music in their band. According to them it's mind over matter which is total rubbish! I assure you, their tinnitus has not reached a debilitating level of severity yet and that's why they can continue to do what they do. However, one day (hopefully not) their tinnitus will reach a level that they will not be able to tolerate. Then, they will come to realise how devastating and cruel tinnitus can be.

      All the best
      Michael

      https://www.tinnitustalk.com/threads/my-experience-with-tinnitus.12076/
       
    9. AUTHOR
      AUTHOR
      UKBloke

      UKBloke Member

      Tinnitus Since:
      1991
      Cause of Tinnitus:
      Loud Music / family history
      Bobby,

      When I was first diagnosed, the tinnitus would only keep me awake at night. Unlike now, I didn't notice it all during the day and was (rather naively looking back) under the impression that this was how things were going to remain forever. Even though the bells, rushes of wind and occasional line of morse-code (you know how it is!!) persisted, once I was able to restore a more natural rhythm of sleep (believe it or not I actually camped down by the fridge for a couple of weeks), the stress associated with the initial diagnosis and ongoing condition reduced dramatically.

      In terms of playing live music I started to wear big gooey earlplugs. These were mouldable waxey things that pretty much blocked any sound out, including the high frequencies associated with drums/cymbals, which I have a feeling my own biological makeup may be more susceptible to. I carried on using headphones at home, and the tinnitus didn't alter over a period of the next, essentially 28 years.

      One thing I would say about heaphones is, the pair I purchased a couple of years ago, and which I believe are at the root of this spike, are incredibly more powerful and advanced in terms of their frequency response than anything I ever used in the past. I suppose I was lucky to enjoy a relatively calm 28 years, but certainly, nonchalance had crept in.

      I don't play live music any more (and haven't for quite a few years). That said, I can't give up playing music altogether, and therefore will probably always use some form of headphone, although at drastically reduced volume, which is the case now. I personally don't believe in pure abstinence, in other words, as a musician who records music as well (and therefore needs to use headphones), I can't simply put down my instrument and never play again. Nevertheless, my tinnitus is more intrusive today, and I'm now also wise to the fact that things could change again.
       
    10. AUTHOR
      AUTHOR
      UKBloke

      UKBloke Member

      Tinnitus Since:
      1991
      Cause of Tinnitus:
      Loud Music / family history
      @Michael Leigh

      Michael,

      Thanks for your last post. Yours was one of the first threads I read in full (more or less) when I first came to the forum so your account is quite familiar. You didn't mention; when listening to the Haydn symphony that caused the catastrophic sounding spike, were you listening on headphones?

      I think your theory on cochlear impact with NIT has a lot of credence. I too am convinced that there's some kind of sensitizing that goes on at the physical level. That said, the theory must be very difficult for researchers to develop, particularly when the MRIs indicate everything is "normal". Perhaps the sensitizing go on at the cell level, or perhaps the brain tries to make an added compensation when the ear is ostensibly in good health. It's a very complex condition and like you say, no two people are the same.

      P.S. I wanted to make a quick edit - I can also modulate my tinnitus by making those strange gurning faces. Reading through the forum, my understanding is that this has something to do with a facial or cranial nerve. Don't know if this is significant where NIT is concerned...
       
    11. Michael Leigh

      Michael Leigh Member Benefactor Hall of Fame

      Location:
      Brighton, UK
      Tinnitus Since:
      April /1996
      HI @UKBloke

      Thanks again for your kind comments.

      I did mentioned that I was listening to Haydn through my HI-FI (speakers) . I am and Audiophile and used to listen to music through high-end headphones. When I developed tinnitus 23 years ago due to headphones I stopped using them and haven't listen to music once through headphones for 23 years.

      When my tinnitus did increase the next morning and got louder over the following days and weeks, the hyperacusis did not return. It has remained cured for 22 years after having TRT treatment using white noise generators.

      Another forum that I visit and mentioned my 2008 experience after listening to Haydn symphony late one evening. A smart alec asked: was I listening to Haydn's "Surprise symphony" which is number 94 It always gets a laugh from other members. I was actually listening to his 104 symphony.

      Hope this helps.

      Michael
       
      Last edited: Jul 9, 2019
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    12. AUTHOR
      AUTHOR
      UKBloke

      UKBloke Member

      Tinnitus Since:
      1991
      Cause of Tinnitus:
      Loud Music / family history
      Hi @Daniel Lion

      Thanks for your post. Prior to me joining the forum I'd read quite a bit of your own story. I hope things are at some kind of manageable level for you at the moment. This is not the best boat we all share, but at least there are some fine oarsmen and women here! Catch you later.

      UKB
       
      • Hug Hug x 1
    13. AUTHOR
      AUTHOR
      UKBloke

      UKBloke Member

      Tinnitus Since:
      1991
      Cause of Tinnitus:
      Loud Music / family history
      @Michael Leigh

      Michael, I was quite surprised by this post because having sifted through your threads I hadn't fully realised you'd found what you've referred to as a cure. That said, there's been quite a bit of information to take in these past few weeks and evidently some of the important stuff has fallen through the net.

      See you around the forum at some point.

      UKB
       
    14. Michael Leigh

      Michael Leigh Member Benefactor Hall of Fame

      Location:
      Brighton, UK
      Tinnitus Since:
      April /1996
      HI @UKBloke

      I don't believe I have ever referred to finding a cure for tinnitus. Habituation yes, but not a cure. Habituation comes in many forms and I have fully habituated to my tinnitus for the 2nd time. This took 4 years which I have referred to in my post: My Experience with tinnitus. I provided you with the link above. The habituation process can be complex and for each person it will be different. When you have the time you might want to read my post about it in the link below.

      Take care
      Michael

      https://www.tinnitustalk.com/threads/the-habituation-process.20767/
       
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