Does Anyone Feel Like They Are Frozen in Time?

Hi Holly
Thanks for coming back.
We all have this very nasty syndrome to cope with, and of course it is tough on every one of us.
We all desperately want a cure, or at least a treatment that can reduce our symptoms.

But that is all down to the doctors, scientists, researchers, drug companies, etc....
In the meantime we all need to survive and try to work on our comfort level, try to develop a strategy to rebuild our sense of calm and composure.

I do my relaxation / meditation every morning, ask my tummy to look after the natural rhythm of my breathing, and normally drift off into a lovely twilight doze.
I don’t autosuggest too early, but when the feeling is right, I use one of my many mantras for the day. I use whichever one just feels right for me.

When I come back out - 20/30 minutes later I often hear myself say - ah - that was lovely....x

Much love Holly
Dave x
Jazzer

 

Here's a snippet which I got at THIS LINK...

• Lithium Orotate: preserves cognitive function, improves mood, is neuroprotective, and detoxifies the brain.

 

Yep! I got it around the age of 25 I am now 32 few years there I did manage normal life, got use to the ringing mind you it was milder. Now its not so mild anymore and I feel like I am just existing. Go to work part time, come home and spend my days off trying to relax then rinse and repeat. I dont really go out anymore just stay at home, it sucks. These are suppose to be the best years.

 

Ever since getting T two years ago, I've stopped going out at night. I'm single and recently moved to a new city and have just about given up hope that I'll ever find a boyfriend. I really miss the nightlife but refuse to expose myself to loud environments for fear of making my condition worse (which is how I got T in the first place!) This includes concerts, festivals, etc. My life has definitely become a lot duller and more sedate. Excited for the day when an outfit like Frequency Therapeutics comes out with a hearing restoration treatment.

 

As for feeling like you’re frozen in time, yup I feel this most days. It’s like I’m in a fog of sorts and just can’t seem to find my bearings, days seems to mould into one. It’s so so sad what this can do to you, I don’t even recognise myself now, neither do family and friends it’s like a spark has gone out and it’s just slightly flickering every now and again. I miss silence so much.

That being said, I have been trying meditation and mindfulness (I know it won’t reduce the volume) just to try and help my moods, anxiety etc still not there yet but I’m hopeful it’ll click into place soon.

 

This is such a good way to put it. It's been two years and I can't tell what I've been doing - I had to stop going out, I had to quit most of my hobbies besides video games (and even that has suffered a lot as my focus is terrible and and I can't play anything that doesn't have non-stop action going on, it's exhausting), no movies, no concerts, no reading, no gym, nothing... I feel like life has left me and I'm moving forward completely motionlessly every day, just to get to the end of the day, just to fall asleep until it all starts again the next day. I wasn't expecting my life to be like this at 33.

 

I feel frozen in an endless loop. Everyday is the same as the last. The same depression, misery, and fear. Daily. I’m 42, there is no way I can do another 40 years of this.

 

When my hyperacusis was severe I barely went out. I just went to work, and afterwards stayed at home and maybe went for a short walk sometimes, but not even every day.

Hyperacusis got better and in exchange I got tinnitus and hearing loss, plus some hyperacusis remaining. Now I can do more things, go out more, but being still very cautious. Walks in quiet environments, some quiet restaurants. For me it is a change for the better because initially my condition was so extreme...

As for your question, yes, life seems to repeat over and over. And a strange thing that happened to me when I was housebound most of the time is that I would watch TV shows and think those people couldnt be real, there couldnt be people like that out there... well, it turned out that I had spent a lot of time disconnected from bars, loud places, and in general .. people. So changes in tastes, fashion etc really surprised me haha.

 

I can relate to so many people's experiences here, and that terrifies me.

I got my tinnitus in June 2019. I knew the second I got it that it would never go away. I wondered how I'd deal with it in the next year. It felt like an ocean away.

But now I'm only a couple of months away from my tinnitus anniversary. The time has gone by so fast, and it feels like I've only been dealing with this for a few months. And I've dealt with it by isolating myself even further, avoiding concerts and parties, and nearly giving up on my passion, music. I imagine the next year will be even harder. I don't have friends, and it just seems impossible to make friends without going out. I can't have the career I want. I can't do anything because everything is a threat to my ears. It feels like everything has been taken from me, but no one around me really cares or understands. I might as well be dead. And I kinda wish I was lol.

 

I felt stuck in time and misery from 2010 on, until I swallowed my pride and accepted I am better off medicated than unmedicated in 2018


since then, life has been a total blur of activity. Some of that is, indeed, because the med stack I use messes with my memory to some extent. But, mostly it just feels like I have gotten super busy doing stuff with my family, rediscovering hobbies I had "lost" to tinnitus, and finding exciting new hobbies like motorcycles, amateur forestry, etc.

I accept that there may eventually be a price to be paid for using these drugs, but, the increased quality of life I am getting NOW while my child is small and needs me, feels worth it. And, who knows, maybe UMich or Leneire comes through for me in the next few years and I can walk back off the pills.

However -- based on my prior history with the drugs I use -- I spent a full 8 years fighting this hard and spending every spare penny I had trying other, non-drug cures. Ultimately that was a lot of money that went nowhere. I did learn some coping skills, and I learned what things helped and didn't with the noise, in terms of trigger point release, TMJ, etc. All that DID improve my quality of life, a lot. Meditating through those years may be the only reason I am still here.

Ultimately, though, I discovered that even when I was doing "everything right", my tinnitus was just better and so was my life, on a pill. So, I let the pills do their thing, but I keep doing all that other work, too, because I have no idea if the pills will work forever, or if age-related hearing loss will give me much worse issues than I have now.

 

I definitely do feel like this. I had plans for this year which would've been disrupted my the current situation anyway, but at least that I would have peace with. Instead they got disrupted by a condition that may never improve, and at 23 that's a very tough pill to swallow. I haven't even done much. I don't have a degree (I was going to grow within my current job... impossible now).

Along with that, enjoying music has been incredibly hard because I have one tone/noise that presents as a hiss often audible over music. I just feel like nothing is real anymore, and I just want to wake up from this nightmare on December 31 2019 when things were still fine. Life has progressed since then, but it feels like I haven't at all.

 

Many of us are dealing with uncertainty about the noise and our futures. I guess one way of thinking about it is, assuming you choose to keep living, in 20 years, you may or may not still have as much bother by tinnitus. That's an unknown. However, in April 2040, you can have similar/less bother by tinnitus and still be working menial jobs with no life (just going by some of the other people talking in this thread's reported situations), or have similar/less bother by tinnitus and have finished school, have a family, or friends, better job, good retirement, etc, whatever (age-appropriate) measure of success compared to your life today. (Hopefully less tinnitus either way, of course!) But chances are actively re-engaging in life may help distract/rewire you. Maybe reframing it like that could help move things along.

 

the weird thing is -- as I was "improving", I'd sorta cycle back and forth between "each day takes YEARS to pass" and "wow, I blinked and a month passed".

The whole last 2 years has mostly been "blink, and a month passes". But I have lots of pictures!! I seem to be smiling in most of them.

 

It's an absolute certainty that you will feel differently or have a another perspective on the situation given time.

It was about two years of letting tinnitus ruin most of my enjoyment time to finally let it go.

Mindfulness is KEY. You have to habituate, so your brain isn't engaging the tinnitus as a threat. For a while my tinnitus went fully for over three months. It came back but I'm sure it will fade ans come back again.

The brain is a structure that has developed
These things take time to achieve
There is a great deal of suffering involved in trying to figure this out.

I personally have had OCD and overcoming tinnitus (the normal kind, I actually have a different ear issue now, which is making my ears explode) was tremendously hard.

 

There is no certainty.
Anyone claiming otherwise is incorrect.

Some will get better, some will stay the same and some will get worse.
Sounds like you are in the first group.
False promises are not helping anyone.

Sorry for the harsh reply, but there is no way to sugarcoat this.

 

You seem to misunderstand my statement and also equate hope with promise.

There is no debate that as we experience a stretch of time, our consciousness, especially related to incoming and persistent stimuli is altered.

Usually involving stressful stimuli, such as tinnitus, a reinforcement is made. Habituation is this concept in regards to tinnitus.

How many times have you thought about the colour of your walls in the last hour? Likely none. Because your mind filters out unnecessary things all the time, as it can with tinnitus.

 

Not everybody can habituate to tinnitus.... at least to the point of filtering out the noise. That's an actual fact. It's literally been proven by science (there is a a paper about it on here, I'll see if I can find it)

I think about the colour of my wall fairly often btw. Likewise I am often aware of the sensation of clothes against my body. See my own nose occasionally etc. Not everybody has a high functioning brain filter.

 

I know what you meant.
What I'm saying is that not everyone will habituate.
This is a fact.

This habituation myth is only confusing those, whom are in the position to possibly help us (researchers and scientists).
Some of us are calling out for real medical solutions and some of us are essentially saying "it's ok, will be fine".
That is confusing at best.

It's not ok.
I'm not interested in "getting used to it", as I find that concept insulting to my intelligence to begin with.
I need a cure, or at least an effective treatment.
We deserve better than this.

 

Hi @johnsole65 -- I hear what you're saying, but you don't seem to be taking into account a certain percentage of people who are not only unable to habituate to their tinnitus, but who have to endure their situation worsening as time goes by. I believe it's a smaller percentage than those who are able to habituate in varying degrees, but please don't discount those sufferers who are not in this very fortunate "able to habituate" category. -- Best...

 

I agree.
I would also like to add, that the color on my wall does not attack me and torture me 24/7.
Also if I don't like the color, I can either leave the room or paint it a different color.
Not really possible with tinnitus, hence the problem.

 

For a start, I just don't believe that is true or at least to the degree people might lead you to believe.

The reason tinnitus causes suffering is because of the emotional response it can create. Breaking an emotional connection to it can severely lessen it. The mind gives it attention because it is seen as a threat. You likely already know this, so I'm not giving a lecture. My aim is to help people.

On Neuroplasticity:

The brain is plastic. Parts of the mind that have created neural pathways can be reshaped. Even parts of the brain that deal with specific centres can grow in other regions.

An Excellent book on this is "The brain that changes itself" by Norman Doidge. I would highly recommend reading it, there is a lot of hope there for tinnitus treatment.

It is in the realms of possibility that people with multiple strokes to train themselves to talk again and literally shape their mind differently. These things take sometimes years of practice. It's very hard to see how you might be in another structure of mind.

I remember going to tinnitus therapy about 2 years ago and being in a completely different mindset. Even the information about threat systems didn't sink in for a great deal if time.
There is one thing knowing something and another realising it. The studies with be generalised and not focused on the individual and will not be a good determining factor.

You must understand that because these things might seem impossible to certain people they aren't. Just because you have high sensory perception doesn't mean you can't hone your positives and diminish your negatives.

Wish you all the best.

 

Actual severe sufferers are telling you that it's true that not everyone can habituate. We need other people with tinnitus to listen to them to be able to raise awareness. In the US alone, 2 million people are severely debilitated by tinnitus according to the American Tinnitus Association. It's estimated that 1% of the world population is severely affected by tinnitus, that's 77 million people.

While most people with chronic tinnitus eventually learn to cope well, even a minority consists of millions of people.

This concept doesn't apply to everyone with tinnitus. Tinnitus can be debilitating in itself and it's not just the emotional reaction to the tinnitus that makes it debilitating, loudness can also matter immensely and like stated before not everyone's brain will tune it out - no matter how the person emotionally reacts to it. Likewise, it's not just the emotional reaction to pain that makes it debilitating.

• The potential role of auditory prediction error in decompensated tinnitus: An auditory mismatch negativity study
• Toward An Exploration of Habituating to Tinnitus: Perspectives on Sensory Gating

I understand you mean well but the cognitive model of tinnitus distress you're referring to has been spreading misconceptions and generalizations for decades, inevitably harming and stigmatizing severe sufferers. Also, even within tinnitus research, they're now talking about a potential loudness model which could explain the distress (finally).

No one is saying that habituation (tuning out the tinnitus most of the time) isn't possible for anyone - but it's a fact that it's not possible for everyone. Tinnitus can also get significantly worse over time and other conditions such as pain-hyperacusis can further complicate the situation.

We can share hope, support and encouragement without ignoring that tinnitus can be a debilitating condition and not everyone will be able to live well with it, unfortunately.

 

Thanks for your reply.

I hope you don't equate my input as anything other than contributory. I an also being terse as there is much more to say on the subject. When I debate, I do so for greater understanding.

It's from this viewpoint that I disagree with some of your comments and agree with others.

That is likely because a wild amount of factors and variables. I haven't spoken or talked to these people in detail. I have no idea their circumstance, brain function, perception of reality or attitude. You would be amazed at the different states of being that a person can exist in and become. I have extensive experience in different states of mind. How do you know they cant?

Of course it important for Tinnitus to be studied and helped medically, my comments do not oppose awareness. This isn't complacency, its doing what you can with what you have, and people often don't know what they are capable of.

Of course it does. The experience is unique yes, but it is how it makes you feel that is why suffering is involved. If people enjoyed the sensation and it was positive then it would be a non-issue.

I feel very much for those whose tinnitus is extremely loud, but for them there is hope in the form of a relatively new and extremely important science that has proven for the mind to be plastic in nature: Neuroplasticity. This really is and has been my main point and is extremely promising for tinnitus.

Again, I get the sense that you feel like I am spreading misinformation or working against some sort of initiative toward a cure for tinnitus, both of which is untrue.

I am trying to expand your mind on the nature of consciousness and our ability rewire our mind and shift our perspective all of which is more than possible. Some people remain the same for decades, others can change drastically in a short period of time.

There was also 18 centuries where people believed the sun rotated around the earth. Science on tinnitus is extremely new, there is no need for such sweeping statements.

Hope is important, far more important than any egocentric view that we might be taking away people's pride in an illusory sense of false hope.

 

I know exactly what you're trying to say but here's the thing: neuroplasticity (as in we can all learn to tune out the tinnitus without medical treatments) isn't the be all end all of tinnitus treatments and won't work for everyone. We need real medical treatments that can actually reduce tinnitus loudness in order to help all patients.

Because you are doing both. You're spreading the misconception that everyone can re-wire their brain to tune out the tinnitus no matter how loud it is - which is not possible for everyone - and because of that you're undermining the need for a cure and real treatments because following that logic "loudness doesn't matter, everyone can habituate", thus there's no urgency to develop new treatments.

I never said anyone specifically can't habituate and would never dare to say such a thing - but there are people who can't habituate and who will be negatively affected by tinnitus until we find real treatments.

There are many users on here who regularly stress the importance of staying optimistic, looking after oneself, CBT, meditation and so - yet they are debilitated by tinnitus and for example, can't work anymore. The emotional response to the tinnitus alone doesn' explain the distress or how much the tinnitus affects someone.

No, it doesn't. There was recently even a new study looking at the cognitive model of tinnitus distress and the loudness model of distress and while they recommended further studies looking into psychotherapy for tinnitus distress, they still concluded certain patients' distress can be explained by the cognitive model and others by the loudness model. So the cognitive model you're talking about does not explain the distress in every patient. Also, saying it's just the emotional reaction is like saying no physical symptom can be distressing in itself (pain, visual snow, nausea, ME, etc.).

 

Hi @JohnSmith117 -- I read the book years ago, and agree with you that it's excellent. Though I have not reached a degree of habituation that apparently is possible for some, I also agree that the main message of the book can provide a lot of hope and potential for tinnitus suffererers. However, I have a pretty strong conviction about neuroplasticity and the brain's ability to adapt, which is that the degree of adapability depends on many factors.

For instance, is a given brain suffering from an impaired blood brain barrier?--which I happen to believe is fairly common. If so, it's likely going to falter where other brains won't. What type of diet, or supplements is a person taking? Do they exercise? Then there's their age, their genetics, their epigenetics, where they live, etc. Do they live in a high polluted, noisy, high EMF environment? If so, their brain and neurological system are almost assuredly going to struggle in many different ways.

What is a person's overall lifestyle, including preferences for what they watch on TV, or perhaps whether they make a habit of singing. I myself do things to help my own brain's neuroplaticity that I suspect most people never do. I do self-acupuncture in my ear and neck areas, I do energy balancing and polarity exercises, and I regularly do self massage on my face, neck, and ear areas, all to ensure optimal circulation and energy flow. I also do various things to stimulate my vagus nerve, which seems to somewhat temporarily calm my tinnitus. I assume this is primarily because the auricular branch of the vagus nerve goes directly to the ear.

And yes, I try to keep a positive attitude, and also try to stay grateful for what I have. I'm fortunate enough to have a home mHBOT unit, which I believe also supports my overall brain health, not to mention having an overall calming effect on my emotions and neurological system. I feel my initial 10+++ wildly screeching tinnitus and extreme inabililty to sleep would never have come down to where it is now averages about 7 or so, had I not done many of these things.

It took me 2+ years of diligently doing the things that I thought might help in the long run before I felt I had finally found a relative amount of stability with my tinnitus and hyperacusis. Would I have improved without doing all those things? Perhaps, but I doubt it. I don't think too many things are guaranteed in life, but we can do things to help stack things in our favor, including enhancing in whatever way we can our own brain's neuroplasticity. This appears to be at least part of the message you're trying to convey, and in that regard (and if that's the case), I have to agree.

 

I think the anxiety from tinnitus greatly altered my sense of time I have had periods of low anxiety off and on the past 3 weeks and on the days that the anxiety is low, time seems to be going slower and the days seem to be lasting a lot longer.

 

Yeah, I know what you mean @missingsilence. I sometimes feel like I'm Dale Cooper from Twin Peaks, who has been told by Laura Palmer in season 2 that he has to remain in the Red Room (or Hell?) for 25 years before he can go back to normal life again. I surely hope it's more like 2.5 years instead of 25 for all of us