Tinnitus, A Personal View

Thanks Stophiss. I believe your tinnitus will improve a lot more with time. Good to hear you are not using the earphones. Honestly, they are absolutely lethal. If you want to make steady improvement and I'm sure that you do continue with what you are doing.
Michael

 

Grateful for your advice Michael.
Be well. Low T days are good days.

 

Couldn't agree with you more stophiss. Low T days are good days...

 

I keep imagining a number of us all together. Despite tinnitus being generally unpleasant i think it would be very humorous.

 

Would be great all meet up and have a party...we would all be laughing and need noise reduction plugs....lots of love glynis

 

Once brash, world is my oyster, self confident, bodaciousness now transformed into weak, anxious, self absorbed sniveling cowards.
If we meet in a group, my first question will be... did my hang nail cause my tinnitus spike? I am worried that the sun may not come out tomorrow. Should I trim my nails and if so how often? Should I use sound enrichment when clipping?
Nah...I haven't changed much.

 

Very interesting and informative reading. Very much appreciated from a 6 weeker here. Pure hell, especially after a second loud sound episode 5 weeks after the first. Oh the luck of being in the wrong place at the wrong time.

Did I read one of the posts suggesting the newest theory is neuro pathway involvement in the brain. Versus damage to hairs. Also, suggestive reading prior to onset?

If so, I have heard in a chronic pain situation that neuro pathways can be rebuilt. Once an insult has occurred through the brain, it develops a learned pathway. It is possible to take a "detour" of that pathway or unlearn it. It will never go away, but can have a different route.

Dr David Hanscomb has published this information in detail with regards to chronic pain. There are many others in the same camp.

Just a thought

 

Yes, tinnitus can be many times brain aka neuropathways gone awry aka 'a brain event' that causes deviation of neuropathways traditionally used for auditory function to move to adjacent previously surrounding dormant neurons...like a train jumping the track. Of course undoing this event is difficult if not impossible. There are some...perhaps a substantial population with hair loss within the cochlea you mention that do not have tinnitus even though their hearing is impaired.

 

Hey Michael! I just read almost everything you wrote and i must say, you have really made me feel much better about my T and my life! That being said, i have quite a few question about it, that i would really like, if of course you had the time, for you to be able to answer me. Also, some of them are kinda personal and since we can't write personal messages here, could I add you on facebook where we could take privately? it would really mean a lot man, i've got so many question and it seems i have found the 'messiah' for them! really man
My name is Marko Filipovic aka Makornik and you can add me on facebook anytime

 

@marko1996 Thanks you for your kind comments. You can send me a personal message here in Tinnitus Talk. Click on my Avatar Picture and choose "Start conversation" and your message will be sent to me privately.
All the best
Michael

 

Hi Michael. Like you, I also contracted tinnitus in April 1996. It was the 28th at 1:09 am. I was watching TV when I suddenly began hearing a high-pitched hissing. I though it was coming from the TV, so I muted the volume. It was then I realized the noise was coming from inside my head. A few months later, I began hearing a very loud, low-frequency humming noise. This distressed me more than the hissing. Thus began my journey of going to doctors, ENT's, getting all the typical hearing and ear exams; I even got three MRI's over the years. Everything came back normal, and I had no hearing loss.

I would go to the library every day to see if I could find an answer on my own. I didn't have a computer, so I would use the ones at the public library. I joined a support group in Rockville, MD. The humming in my ears consumed my life (I had habituated to the hissing a few months after that started). It kept me awake, got worse when I talked on the phone, and even when I strummed my acoustic guitar. I could also physically feel the humming. It was as if a propeller plane was flying around in my head. If I shook my head from side to side, the humming would stop for a few seconds. But then it would start up again as soon as my head was still.

I can't begin to describe the depression and hopelessness I felt. I lost all desire to do anything. It WAS my life. I would have to force myself to eat, go to the gym, and even get out of bed. I finally gave antidepressants a try as I had tried everything else. The AD's seemed to help for a while. In fact, the first one - Effexor XR - actually made the humming stop altogether for about a year. I was happy beyond words. I had my life back again. But then one morning the humming mysteriously returned. My doctor tried putting me on Paxil and Zoloft, but neither one worked. I was back in my old hell again.

In 2007, I started taking Lexapro. I've always suffered from depression and anxiety, even before I got tinnitus. So the Lexapro did help me in those areas. Ten years later, I'm still on it. Up until this past Christmas Eve, I had not heard that awful humming noise in about 8 months. But now it's back with a vengeance wreaking its usual havoc on my ears and sanity. My diet hasn't changed, and I still exercise. It's a mystery to end all mysteries. I just hope this return is temporary and that it will fade away like it has before. When I relapse like this, I'm convinced it will never go away again.

I still have the incessant hissing in my head, but it doesn't bother me that much. The humming stops me in my tracks. I'm just hoping that this latest round of darkness will lift soon.

 

@Frayact
Hi Fryact.
Thanks for writing such an interesting post although I'm sorry to hear of your situation and hope that it improves again. My tinnitus started on April 4th at around 2pm while listening to music through headphones. When I had finished listening and took the headphones off I heard the ringing and like you didn't realise until after a short while the noise was coming from inside my head. I had severe tinnitus and hyperacusis. I went on TRT and was fully habituated in 2 years. The hyperacusis had completely cured and the tinnitus reduced to a very low level.

In 2008 the tinnitus returned with a vengeance due to noise exposure listening to my hifi I believe. My hyperacusis didn't return. I went on TRT again. It has been a hard long road back. It took 4 years to habituate for the 2nd time. My tinnitus isn't like it used to be. Now it can be: completely silent, mild, moderate and severe. It no longer reaches very severe levels. I take clonazepam for 1 or 2 days when it's severe.

Hope that you start to feel better soon.
All the best
Michael

 

@Michael Leigh thanks for posting. Everyone new to this should read it.

My tinnitus came on suddenly after a fungal ear infection. I’d had conductive hearing loss in that ear for 10 years, but no tinnitus. My theory is that maybe some of the medicine used for the infection made its way to the inner ear via a small perforation in the eardrum and damaged hair cells. I may never know the cause, but I’ve had tinnitus 24/7 for 8 months. It started as tones, now it’s mainly static and crickets and ranges from medium to very, very, loud.

When I first came on the board I thought that nothing but a complete cure would be acceptable. Now I am just thankful that I have quieter days and would be happy with a way to turn ALL days to quieter days. Anyone who has experienced very loud, intrusive tinnitus can probably relate. I worry less about debilitating diseases that will kill me because part of me thinks "Hey, at least the tinnitus will be gone." So a lot of days I just want to go to sleep until a new one begins.

Here are a few thoughts I wanted to throw out there.

#1. A neurologist told me that headphones with soothing sounds would be okay for situations such as airplanes. I’m still hesitant to listen to sound through headphones, but at the same time airplanes can be really noisy.

#2. I miss being able to enjoy music. The tinnitus I have gets louder when exposed to music, noise maskers, faucets and anything that sizzles. I wake up to quiet tinnitus, but as the day goes on it gets louder and louder. The advice to avoid quiet must not apply to everyone because quiet helps me even if I'm just sitting here listening to the stupid crickets.

#3. Correlates with my menstrual cycle, and explaining this to doctors has been exhausting because they seem to think I’m nuts even though I have charts showing that, for instance, Day 14 is always out of control. There’s one week during my cycle that the tinnitus is very, very, low and usually it’s when progesterone is higher.

#4. I've seen an acupuncturist, a hypnotist, a therapist, several naturopaths, an allergist and endocrinologist and a neurologist. The neurologist prescribed some Klonopin, so it's kind of the last hope, but as mentioned I'm hesitant to use it long term and have been scanning the board to reading other people experiences with supplements like 5-http, tryptophan, valerian, l-theanine and other calming agents. I still haven’t tried Lipoflavenoids and only stayed on Ginkgo for a couple of days.

I feel like the team at University of Michigan is onto something with the signal timing theory and am hoping their device gets approved.

Vagus nerve stimulation? Low level laser therapy?

How about TMS therapy mixed with a blast of Ketamine? I like the sound of that, but it probably wouldn’t be prudent to try it without at least trying an SSRI.

Thanks to everyone who has shared their experience. In the beginning I was very superstitious as to what might make the tinnitus worse. At one point I was convinced eating Cheerios made it worse. Now at least I can laugh at that.

 

An interesting post @BuzzyBee I'm sorry to know that you have been through so much. If your tinnitus wasn't caused by loud noise then something else caused it. Could be the medicine that you mention contributed or an underlying medical condition. There is nothing I can suggest but hope you get some relief if you decide to try the clonazepam and also find a doctor that is able to help you.
All the best
Michael

 

@Michael Leigh I've just begun reading but already you've explained certain things to me that my hearing therapist is having me do, which is helpful! I would like to print this out and have it made into a pamphlet that I could leave in my hospital hearing department; it's a great source! Thanks Michael!

 

Thanks for you kind comments @Paul10 I'm pleased that you find my article helpful. If you like, I can send it to you in PDF format, which has a colour diagram of the ear and parts named. Just PM me your email address.
All the best
Michael

 

What a great article ! The best I've read and extremely informative! Thank You for taking the time to invest so much of your life in helping others, myself included.

I think many people (those who don't have it or those with a milder case) minimize tinnitus by dismissing the impact it can have on us. This is a road I never thought I'd travel and to say it has been easy would be a lie ... at times it's been extremely overwhelming. My faith is helpful to me, as are articles such as yours. Again, thank you very much.

 

You are very kind @Hadassah and thank you. It took me months to write that article and many hours of drafting and editing - at the same time battling with loud tinnitus much of the time.
Michael

 

Hehe, I may write a more sophisticated reply when I have time, but not sure if I do.

I disagree on a lot of stuff, but it was well written and informative for a lot of people, thank you for explaining your point so well.

btw I read a really interesting concept somewhere, to look at the tinnitus a whole lot other way. In easy words normal brain has filters to block things out and sorts out what you should hear see and not, to not overload your senses, some cause of Tinnitus removed this filters and we hear what is normally there. So an approach for healing Tinnitus has to be to recreate them ....
which is kind of impossible maybe....

The sleeping part I disagree by first hand experience .. ... even in lucid state the tinnitus is completely gone. We have actually very little clue about human minds, at least this is what I think about reading modern world leading marx plank institute papers about the human mind ..

Completely disagree here too ... there are some very sophisticated headphones out there, which help a lot
dealing with your Tinnitus and no different as if you would hear something else in the nature ...=

Another one .. Then there are those that agree with me that using a computer can make tinnitus worse for some people, due to the EMF (electro magnetic field) that all computers emit.

Please read more about physics and electro magnetic fields, and the four basic forces of nature .gravitational, electromagnetic, strong, and weak. and modern particle physics and and hehe and surely stay away from youtube ....
The thing that is unexplored how much placebo effects work on human bodies ...

and a lot more .. ... the problem is more we do not know what in the human bodies causes the Tinnitus, we just observe symptoms, even the hair cells damage thing .. it is an assumption.

anyway always love to read other people experiences and learn from their point of view.

Thank you
Sincerely
Wojtek

 

@w

It is impossible to please everyone and each person is entitled to their opinion and I respect that. As the title of my article states: Tinnitus, A Personal View.
I wish you well.
Michael

 

Hi Michael,
I want to thank you for your insightful & thoughtful article. I can relate with most of what you wrote. I also learned several new things. You gave me food for thought. Speaking of food.. one thing.. some people are very sensitive to salicylates in food drink & personal care products. I happen to be one. If I even look at soy sauce or msg, my T spikes for days. I simply avoid the major players; I don't get obsessed, but I know who the culprits are. You are an excellent writer and relay your thoughts very well. I wish I had access to your words when I first encountered T; it would have saved me allot of heartache n the beginning years. Again, I thank you .

 

Hi @Quiet please

Thank you for your very kind words they mean a lot to me. I would like to say the following and hope that you don’t mind the long post. Since 2008 my tinnitus changed due to noise exposure and now has large fluctuations in intensity from silent, mild moderate and severe. It no longer reaches extreme severe levels that would last for days. From 2008 to 2010, I had TRT for the 2nd time in eleven years. It did help but my tinnitus hasn’t returned to the level prior to 2008 and took 4 years for me to habituate for the second time. I take clonazepam when needed. I was medically retired from work because of this condition many years ago.

As I mentioned in the introduction to the article, I wrote it after quite a few people encouraged me to do so. However, I have no formal training in writing but have always liked to express myself with it. I trained as a carpenter and joiner. In 2014, I moved from London where I was born and bred and now live in Brighton by the sea.

I began writing Tinnitus, A Personal View, in early 2015 and hadn’t a clue where to start. On top of this, I had my tinnitus to contend with and the large fluctuations in intensity resulting in no two days being the same. I gave up on writing this piece so many times, I can’t remember but for some reason I kept returning to it because it haunted me constantly. I like to finish something that I start and just could rest each time I threw the towel in, and said I can’t cope with writing and dealing with the tinnitus, which was very loud and intrusive for most of the time.

After many drafts the result is what you see and I’m pleased if someone finds what I have written helpful.

Twenty-one years ago when I first got tinnitus with severe hyperacusis, I was distraught, confused and an emotional wreck for quite some time. It was help that I received from other people more experienced in tinnitus that gave me the will to carry on and eventually to find my way. In appreciation of this help, I have tried to help others with this condition.

You have had tinnitus for quite a while and very experienced with it. You know what is likely to make it spike and adjust your lifestyle accordingly. That’s what tinnitus is all about finding what works for us. Well done and I wish you all the best for the future.

Thank you once again for your kind comments.
All the best
Michael

 

Hi Michael,

Yes, paying it forward is paramount. We are all in this together whether we wish to be or not. The need and desire to help others with T is in me as well, I'm just not as good at expressing it and certainly not as experienced. My denial, anger and frankly my stubbornness kept me from having more years that were better. All the rounds of doctors and tests that went absolutely nowhere made me cynical there for a awhile. I'm not proud of it; it just is what it is.

You have had this condition for 23 years! That's a very long time. I commend you for being so kind & compassionate and definitely a wonderful writer. You convey your points across precisely and clearly. Its interesting how you felt "compelled" to write about your journey. Maybe something higher out there was pushing you gently along; who knows?

I may have had T for 9 years this May, (it came on suddenly while I in the middle of an intense aerobic water aquas class by the way), but I know I must continue to learn, grow and experiment further. That's why I'm going to look into some of the herbal remedies and modalities you suggested. Until this is gone from my otherwise pretty nice life, I don't think I can be truly happy or content. I know that is very sad, but pretty sure you understand.

I see you're in the UK; I'm in New York, USA as you can see. I haven't been able to sleep due to a headache from hell. Nothing is taking it away. I'm going to be a wreck tomorrow for work, I'm sure. But the reason I tell you this is something I hope you find interesting.

I had a motor vehicle accident last month (I was stopped & was hit very hard in the rear by someone on their cellphone - over $10,00 of vehicle damage). I had a severe concession with double vision, headaches, whiplash of the neck, shoulder and back. I had a heavy duty epidural steroidal shot this afternoon for my lumbar back region (L2-4) and now have an awful spinal headache. l just cant sleep. It'll be fine, I'm sure.

BUT the interesting part is the T has been absolutely quiet after the injection. Coincidence? I really don't believe in those anymore. The T noise level is a 0 out of 10. I'm usually a 5-6 or when I'm spiking, its a 9-10. This has been over 16 hours now. I'm sure it temporary, but as you can image, I'm happy; well, except for the spine headache of course. I have always suspected my past neck & spine issues (some bulging discs & spinal stenosis) have been the cause of or at the very least, a contributing factor of my T. But of course, no doctor has been able to verify that (Surprise!). This is why I see an cranial chiropractor and have experienced relief in volume & pitch.

Just another thought for your great brain to ponder. Hope to chat soon.
Take care.
Anne

 

really amazing post! thank you for the info

 

Thank you for your kind comments.
Michael

 

Michael, u are right about the food thing went that route and loss alot of weight because afraid to eat stuff now I don't believe it makes much difference

 

As you know Ron, tinnitus can be a very distressing condition. Some treatments and coping methods help. When it comes to food and drink, one has to be careful that they don't put more stress upon themselves when trying to find solutions.

Michael

 

Do you eat everything

 

Yes I eat and drink everything that I like.
Michael

 

Thanks for that Michael. That's an immense help As someone 5 weeks in - and still trying to determine what exactly is happening - the confusion, fear, and uncertainty is the worst part. Considering how prevelant it is governments need to start doing more - funding in particular for research - but just making it easier for anyone this happens to to find IMMEDIATE help instead of stumbling around in the dark. Granted, my timing was bad as well because my doctor was away moving and on vacation and trying to get things going without one is like pulling hens teeth. But it's all starting to happen now and I'm trying to remain hopeful it'll pass, as they say it does for most people who's wasn't physical - mine wasn't. Even in the past few days as I've started some AM/AD meds, herbals, chamonille tea, etc. and just starting to bring my anxiety and depression down it's helped a ton. At one point I even work up this morning and I didn't even hear it. Thought I got lucky for a minute but at least it's way down over what it's been the past few weeks when I was all freaked out - and one cannot overstate how crucial getting real rest is. I've seen people saying 'don't take naps', I vehemently disagree with that sort of advice. When you're running on a sleep deficit and your anxiety is through the roof than you take your rest where you can get it.

Thanks for the great advice on the on sound as well. The first few weeks I was freaking out pretty bad and masking pretty hard but I've already brought it down over the past week and found the results amazing. Actually over the last few days, today especially when I awoke it wasn't there at all for about 15 minutes. Then is started slow and low and has remained that way for the rest of the day today. Best day yet, so I'm hoping against hope this will pass as it does for so many others - and of course that everyone else finds relief sooner than later too.