Severe Tinnitus Odyssey Since MRI

[brixenbrixen]

Hello, my name is Martina,

I live in Germany - I have been here on Tinnitus Talk for quite some time, now I am writing as well. I got my tinnitus from an MRI on November 16, 2021. The headphones did not fit properly, even through the FFP2 mask - ears were buckling. I pressed the horn several times, they got me out, but the damage was done. I had super loud tinnitus in both ears.

I've been on an odyssey ever since. Relatively soon after the incident, I went into psychiatric care with anxiety disorder, where I stayed for 2 ½ months. Then in March 2022 I was a little more stable until April 2022 when I became suicidal for 3 months - I actually wanted to take my own life every second. Finally, I went back to the psychiatric ward. I was there for two and a half months, also just wanting to die, until at some point I said to myself, my tinnitus actually sounds like white noise that I had on my ears for masking purposes. By the way, I use the Sony LinkBuds - as an open Bluetooth system and as an alternative to the Noiser, because I can record to them individually.

I then got out of the clinic in September and was able to resume my life to some extent - I slept until 12 noon, then went out with the dog, then went to work a bit as well as I could - I'm a self-employed journalist - and then met friends etc. I thought it could go on like that. I already wanted to take over the leadership of a tinnitus support group.

But in mid-November my tinnitus worsened enormously. I first heard silvery waves in my ears. Then whistling sounds - a whole concert. A few weeks have now passed since then, and I am once again in the clinic. I now hear ten tones and can't be in a quiet room without a Sound Machine because I couldn't stand it. The worst is the metallic sound that goes all through my head and sounds like a spiral in my ear. I have an electric plant in my head. The sounds also change from day to day. I can never know what it will become.

Despite the deterioration, I have stopped thinking about suicide. I must admit that in the summer I had already contacted Dignitas in Switzerland about assisted suicide, sent them my documents and also found a psychiatrist. All this is now on hold. I am struggling.

When I feel sorry for myself, I immediately think of Jean-Dominique Bauby, the journalist who suffered a stroke and then had locked-in syndrome, from which he died three years after the stroke. He wrote a book about it just with the blink of an eye - Butterfly and Diving Bell - what a will. He probably would have taken my situation with a kiss hand, even though it is very difficult.

When I feel sorry for myself, I immediately think of Jean-Dominique Bauby, the journalist who suffered a stroke and then had locked-in syndrome, from which he died three years after the stroke. He wrote a book about it just with the blink of an eye - Butterfly and Diving Bell - what a will. He probably would have taken my situation with a kiss hand, even though it is very difficult.

My life before was colorful and beautiful. I was happy. Arrived. The right partner, a dog, a vacation home, the perfect job, friends. Now I can only enjoy all that minimally, but it's still there. I plan to keep fighting. And if only I would sit in a room for the rest of my life, surrounded by sound machines playing rain. There are people who have it worse.

I'm trying to deal with my own illness (yeah it's not an illness - and it helps me to read that others are struggling like this too. It's a bad lot, but we have no other choice.

I think you who are so open here on the Tinnitus Talk are great -
and look forward to exchanging with you -

Martina

 

[MindOverMatter]

@brixenbrixen, thanks for sharing! This tells me that you are a strong individual. You came all this way, you are still here, and you won't give in.

Your life isn't over, and there is still time for it to yet again become colourful and beautiful.

 

[Stuart-T]

Hello Martina, sorry your tinnitus has got to that level.

You are in the right place for support though and there is every reason to hope you can get on living your life even if it is going to be more challenging than before.

Yes, I also think there are worse conditions - I have a friend with prostate cancer and he has had several multi needle biopsies - so I think about that when my ears are ringing and hissing.

There are people who report getting tinnitus or worsening tinnitus after MRI. It is one reason I declined an MRI from the ENT people when I was offered.

I am amazed though that yours has developed as you describe from just one MRI. I wonder what caused the worsening in November. Did you have COVID-19 infection or vaccination?

 

[Michael Leigh]

I use the Sony LinkBuds - as an open Bluetooth system and as an alternative to the Noiser, because I can record to them individually.

Hi Martina,

I am sorry to know of the difficulties that you are having with tinnitus at the moment, and hope you start to make some improvement soon.

The type of tinnitus you describe is known as noise induced. Although it can be brought on by sudden exposure to loud noise, this isn't usually the case. If this should happen as a first time event, the tinnitus is usually temporary. I am not saying the sound from the MRI machine didn't cause your tinnitus, but if you regularly listened to audio through headphones, earbuds, headsets, noise cancelling or bone conduction headphones, it's possible your tinnitus was already present but operating at a low level, where your brain was able to comfortably ignore it and not make itself known. This is quite possible so please don't dismiss it.

If this is the case, the noise from the MRI machine in such a confined environment which you were in, could have been the catalyst that caused your tinnitus to increase and make itself known. One of the most common causes of noise-induced tinnitus, is listening to audio through the devices I have mentioned above.

I advise you not to listen to any type of audio through headphones, earbuds, noise cancelling and bone conduction headphones, even at low volume, as there's a risk of making the tinnitus worse. Sound enrichment is good to listen to but should be played through a table top sound machine and not played through any type of headphones including earbuds, for people that have noise induced tinnitus.

Please click on the links below and read my posts: New to Tinnitus, What to Do? Tinnitus, A Personal View. Go to my started threads and read: Will My Tinnitus Get Worse? The Habituation Process, How to Habituate to Tinnitus, Tinnitus and the Negative Mindset, Acquiring a Positive Mindset.

I wish you well,
Michael

New to Tinnitus, What to Do? | Tinnitus Talk Support Forum
Tinnitus, A Personal View | Tinnitus Talk Support Forum

 

[InNeedOfHelp]

Hi Martina,

MRI scan also caused my tinnitus a few months before yours started. Not properly fitted earplugs (I didn't know you had to rub the earplugs to make them smaller - never used them before and didn't get any instruction).

Things will get better once you stabilize, you might spike/worsen (so have I) but every spike and worsening eventually settles at a new baseline lower than the peak of the spike. The peaks are the worst. My suicidal thought are long gone. I stopped socializing and live my life more quietly to avoid further worsening and it has helped my condition.

Take care.

 

[brixenbrixen]

@brixenbrixen, thanks for sharing! This tells me that you are a strong individual. You came all this way, you are still here, and you won't give in.

Your life isn't over, and there is still time for it to yet again become colourful and beautiful.

Yes I am... and I have a wonderful partner who supports me endlessly. This is a huge gift - I hope that life will be colourful and beautiful again.

Hello Martina, sorry your tinnitus has got to that level.

You are in the right place for support though and there is every reason to hope you can get on living your life even if it is going to be more challenging than before.

Yes, I also think there are worse conditions - I have a friend with prostate cancer and he has had several multi needle biopsies - so I think about that when my ears are ringing and hissing.

There are people who report getting tinnitus or worsening tinnitus after MRI. It is one reason I declined an MRI from the ENT people when I was offered.

I am amazed though that yours has developed as you describe from just one MRI. I wonder what caused the worsening in November. Did you have COVID-19 infection or vaccination?

Yes it was just from the MRI - it was so loud that I felt really physically pain in the ears. In November I had no COVID-19 vaccination nor infection - I don't know what caused the spike. I didn't change anything, I had no acoustic trauma. Just two weeks before I had a specialized music therapy for tinnitus at Dr. Heike Argstatter in Heidelberg. It is very well known here in Germany - I had contacted her regarding the new tones - but she said there were no other patients that reported it, so I don't know anything about the cause. I am just wondering because I thought tinnitus from acoustic trauma will be stable for years. Uhhh, not mine.

I still haven't had a COVID-19 infection - thank you that you feel with me!

Hi Martina,

MRI scan also caused my tinnitus a few months before yours started. Not properly fitted earplugs (I didn't know you had to rub the earplugs to make them smaller - never used them before and didn't get any instruction).

Things will get better once you stabilize, you might spike/worsen (so have I) but every spike and worsening eventually settles at a new baseline lower than the peak of the spike. The peaks are the worst. My suicidal thought are long gone. I stopped socializing and live my life more quietly to avoid further worsening and it has helped my condition.

Take care.

Hi colleague! Yes, I've seen here on Tinnitus Talk a few people that experienced our case - what a shame that the doctors aren't more aware of it. It can ruin one's life.

Have you had a spike after your tinnitus onset? How long were you in the MRI? I was in just like 4-5 minutes - I had earmuffs on and I didn't think that anything would be wrong because I trusted in the procedure. I had had an MRI before which was all fine - but I have to say that was technologically more advanced - it was in another clinic. The one I had the difficulties with was done in the Sana Klinikum Offenbach - I wish I had chosen another clinic...

Hi Martina,

I am sorry to know of the difficulties that you are having with tinnitus at the moment, and hope you start to make some improvement soon.

The type of tinnitus you describe is known as noise induced. Although it can be brought on by sudden exposure to loud noise, this isn't usually the case. If this should happen as a first time event, the tinnitus is usually temporary. I am not saying the sound from the MRI machine didn't cause your tinnitus, but if you regularly listened to audio through headphones, earbuds, headsets, noise cancelling or bone conduction headphones, it's possible your tinnitus was already present but operating at a low level, where your brain was able to comfortably ignore it and not make itself known. This is quite possible so please don't dismiss it.

If this is the case, the noise from the MRI machine in such a confined environment which you were in, could have been the catalyst that caused your tinnitus to increase and make itself known. One of the most common causes of noise-induced tinnitus, is listening to audio through the devices I have mentioned above.

I advise you not to listen to any type of audio through headphones, earbuds, noise cancelling and bone conduction headphones, even at low volume, as there's a risk of making the tinnitus worse. Sound enrichment is good to listen to but should be played through a table top sound machine and not played through any type of headphones including earbuds, for people that have noise induced tinnitus.

Please click on the links below and read my posts: New to Tinnitus, What to Do? Tinnitus, A Personal View. Go to my started threads and read: Will My Tinnitus Get Worse? The Habituation Process, How to Habituate to Tinnitus, Tinnitus and the Negative Mindset, Acquiring a Positive Mindset.

I wish you well,
Michael

@Michael Leigh, thank you for your long reply. No, I barely used your mentioned devices before. I am convinced that it was the MRI. Thank you for your hints. I think you are a very good supporter and knowledge base here on Tinnitus Talk. I've read already your articles - thank you for that

 

[InNeedOfHelp]

Hi colleague! Yes, I've seen here on Tinnitus Talk a few people that experienced our case - what a shame that the doctors aren't more aware of it. It can ruin one's life.

Have you had a spike after your tinnitus onset? How long were you in the MRI? I was in just like 4-5 minutes - I had earmuffs on and I didn't think that anything would be wrong because I trusted in the procedure. I had had an MRI before which was all fine - but I have to say that was technologically more advanced - it was in another clinic. The one I had the difficulties with was done in the Sana Klinikum Offenbach - I wish I had chosen another clinic...

My MRI was of the spine so around 25 excruciating minutes...

I have had 2-3 permanent worsenings since onset, all caused by sound. I have had plenty of tough spikes, the toughest ones lasting over a month. It takes months to get back on the rail after a worsening but eventually I manage to find calm and peace after worsenings. Even though the peak of long spikes makes you feel like there is no way out. I'm not fully habituated yet as spikes, which I have on a weekly basis, still frighten me. Heavy accidental sound exposure still brings full blown panic. But I can deal with my baseline tinnitus now. Keeping it on this level is one of my life goals now

 

[Michael Leigh]

@Michael Leigh, thank you for your long reply. No, I barely used your mentioned devices before. I am convinced that it was the MRI. Thank you for your hints. I think you are a very good supporter and knowledge base here on Tinnitus Talk. I've read already your articles - thank you for that

Thank you for your kind comments Martina.

It is unfortunate that the MRI caused your tinnitus. Try to remain positive that your situation will improve with time. I note that you use Sony Linkbuds, and will assume you listen to audio through them. Since your tinnitus is noise induced, I suggest that you don't use them until your tinnitus improves. If possible, try not to use them at all, this way you will eliminate any possible chance of your tinnitus worsening.

I appreciate not everyone with noise-induced tinnitus will be affected by headphones, earbud and headset use. However, more often than not, these devices do make tinnitus worse for a lot of people that have noise-induced tinnitus. Type headphones in the search box at the top of this page and read the posts.

Please click on the link below and read my post: Can I Habituate to Variable Tinnitus?

All the best,
Michael

Can I Habituate to Variable Tinnitus? | Tinnitus Talk Support Forum

 

[brixenbrixen]

My MRI was of the spine so around 25 excruciating minutes...

I have had 2-3 permanent worsenings since onset, all caused by sound. I have had plenty of tough spikes, the toughest ones lasting over a month. It takes months to get back on the rail after a worsening but eventually I manage to find calm and peace after worsenings. Even though the peak of long spikes makes you feel like there is no way out. I'm not fully habituated yet as spikes, which I have on a weekly basis, still frighten me. Heavy accidental sound exposure still brings full blown panic. But I can deal with my baseline tinnitus now. Keeping it on this level is one of my life goals now

@InNeedOfHelp, I felt also quite good with my baseline before the worsening - we will see how I can habituate. I wish for your tinnitus to be stable in the baseline - more that it lowers of course It sounds that you can handle it quite well!

It is unfortunate that the MRI caused your tinnitus. Try to remain positive that your situation will improve with time. I note that you use Sony Linkbuds, and will assume you listen to audio through them. Since your tinnitus is noise induced, I suggest that you don't use them until your tinnitus improves. If possible, try not to use them at all, this way you will eliminate any possible chance of your tinnitus worsening.

I appreciate not everyone with noise-induced tinnitus will be affected by headphones, earbud and headset use. However, more often than not, these devices do make tinnitus worse for a lot of people that have noise-induced tinnitus. Type headphones in the search box at the top of this page and read the posts.

Dear @Michael Leigh, I appreciate your advice. I don't listen to music with the LinkBuds. Just when the tinnitus is too loud outside, I use them as an alternative to noise generators, and, because they are open, I can hear the surroundings.

I've found the advice here:
https://tinnitusheilen.de/sony-linkbuds/

But I should look for real noise generators. Unfortunately, my audiologist said there were none with Bluetooth. I want to listen to my individual, personal sound enrichment. Do you know about some noise generators with Bluetooth?

Best,
M

 

[Juan]

He wrote a book about it just with the blink of an eye - Butterfly and Diving Bell - what a will. He probably would have taken my situation with a kiss hand, even though it is very difficult.

There's a great movie about that too.

My life before was colorful and beautiful. I was happy. Arrived. The right partner, a dog, a vacation home, the perfect job, friends. Now I can only enjoy all that minimally, but it's still there. I plan to keep fighting. And if only I would sit in a room for the rest of my life, surrounded by sound machines playing rain. There are people who have it worse.

Over time you will be able to conquer spaces of freedom again. Tinnitus and hyperacusis are slow. Ears change slowly, and progress is super slow and can be erased by loud noise in the blink of an eye. But your brain will adapt eventually and you will find strategies to navigate the noise and noisy situations, and try to make the most of the things you can do and enjoy.

 

[Michael Leigh]

But I should look for real noise generators. Unfortunately, my audiologist said there were none with Bluetooth. I want to listen to my individual, personal sound enrichment. Do you know about some noise generators with Bluetooth?

Hi Martina,

Since you find your Sony Linkbuds helpful, then continue using them but please be careful.

No matter how good earbuds are, they are not the same as wearable sound generators that are meant for treating tinnitus, hyperacusis and for using as sound enrichment. I have explained these differences many times in this forum. I hope to be writing a piece on sound enrichment and white noise generators soon, but have a lot on my plate at the moment.

Many people have contacted me over the years that have used earbuds and headphones to listen to either white or pink noise, or compiled their own sounds for sound enrichment. Unfortunately, a lot of them have noticed their tinnitus has spiked or increased when using this form of therapy. People that have been affected are those with noise-induced tinnitus.

I have used wearable sound generators for over 20 years and never had any problems with them. My present sound generators are made by Oticon, and connect to my phone by Bluetooth. My audiologist programmed three sounds that I chose via computer: white and pink noise, and wave sounds. The volume can be independently adjusted and a tinnitus sound equalizer is fitted, that allows Bass, Mid-range and Treble to be finely tuned.

Music cannot be streamed to my sound generators which is good as it's not something I recommend. I have explained my reasons in previous posts and hope to do so again in the near future.

The company Widex also make wearable sound generators. I believe they have full Bluetooth connectivity and enable music to be streamed.

Wearable sound generators need to be used correctly, otherwise there is a risk of spiking the tinnitus and hyperacusis.

Michael

 

[brixenbrixen]

Over time you will be able to conquer spaces of freedom again. Tinnitus and hyperacusis are slow. Ears change slowly, and progress is super slow and can be erased by loud noise in the blink of an eye. But your brain will adapt eventually and you will find strategies to navigate the noise and noisy situations, and try to make the most of the things you can do and enjoy.

@Juan, thank you so much for your reply - I'll do my very best. Yes, I watched the movie - it's great!

Hi Martina,

Since you find your Sony Linkbuds helpful, then continue using them but please be careful.

No matter how good earbuds are, they are not the same as wearable sound generators that are meant for treating tinnitus, hyperacusis and for using as sound enrichment. I have explained these differences many times in this forum. I hope to be writing a piece on sound enrichment and white noise generators soon, but have a lot on my plate at the moment.

Many people have contacted me over the years that have used earbuds and headphones to listen to either white or pink noise, or compiled their own sounds for sound enrichment. Unfortunately, a lot of them have noticed their tinnitus has spiked or increased when using this form of therapy. People that have been affected are those with noise-induced tinnitus.

I have used wearable sound generators for over 20 years and never had any problems with them. My present sound generators are made by Oticon, and connect to my phone by Bluetooth. My audiologist programmed three sounds that I chose via computer: white and pink noise, and wave sounds. The volume can be independently adjusted and a tinnitus sound equalizer is fitted, that allows Bass, Mid-range and Treble to be finely tuned.

Music cannot be streamed to my sound generators which is good as it's not something I recommend. I have explained my reasons in previous posts and hope to do so again in the near future.

The company Widex also make wearable sound generators. I believe they have full Bluetooth connectivity and enable music to be streamed.

Wearable sound generators need to be used correctly, otherwise there is a risk of spiking the tinnitus and hyperacusis.

Michael

Dear @Michael Leigh, so I have to go to my audiologist once again - maybe there is a solution - and I will be careful of course!

Best,
M

 

[Michael Leigh]

Dear @Michael Leigh, so I have to go to my audiologist once again - maybe there is a solution - and I will be careful of course!

Best,
M

Dear Martina,

The advice that I give on noise-induced tinnitus is not absolute, but is based on many years living with this condition. I have counselled and corresponded with people affected by it. No two people will experience noise-induced tinnitus and hyperacusis the same but often they will share similarities.

One or a combination of up to four things are usually linked to making noise-induced tinnitus worse, after a habituation period that has lasted for more than one year. The introduction of a new medication, stress, further exposure to loud noise, or listening to audio through headphones, earbuds, headsets, noise cancelling and bone conduction headphones, even at low volume.

Not everyone that has noise-induced tinnitus will be affected by headphone, earbud and headset use but many people are. Some audiologists tell tinnitus patients listening to audio through the devices I have mentioned is fine as long as the volume is kept low. Many people that have followed this advice have contacted me and said their tinnitus has either spiked or increased to a new permanent level. This is the reason I advised, that you type headphones in the search box at the top of this page and read the posts.

Take care and all the best,
Michael