Ear Infection: 10 Weeks in from a Snowball Effect of Bad Luck

[ErikaS]

Hello all,

I have been on Tinnitus Talk more times than I would like to admit in the past 7-8 weeks, but I am having some really bad days as of recently so I figured I would share my story (sorry in advance for the detail) and my unique tinnitus to maybe get some feedback, support, etc. as there are quite a few factors at play here.

I am 33 and I never had ear issues. Never had hearing problems and hadn't had an ear infection since I was a child. Got OG and Omicron COVID-19, neither affected my ears to my knowledge. However, this past July, I developed random ear inflammation/ETD after being on some immunosuppressants for a short while for an IVF procedure. Even after I got off of all the suppressants, it didn't go away, It's like the Prednisone and other meds wreaked havoc on my immune system and created some type of inflammatory response. I was feeling like I had to constantly yawn to open my Eustachian tubes, and the only relief came when lying down. It was not fun and very concerning as I had no idea what was going on. I saw my first ENT end of July, he tells me mild ETD and wanted to put me on 40 mg of Prednisone for 2 weeks. I was like "sir, immunosuppressants are what gave me this", to which he had no response other than try Flonase and decongestants for a few weeks. I was recommended some Mullein Garlic ear drops from a friend for inflammation, tried them a few times, no change. No ear ringing at this point btw.

Fast forward to end of August, my Eustachian tubes finally feel better and like they are starting to function normally, but my actual ears still felt full and off. I went to my second ENT on August 26th. She looked in my ears and asked "have you used any ear drops?" I said yes, weeks ago some homeopathic ones. She said "looks like it created a pseudomembrane on your eardrums", she quickly grabbed the microsuction and was in my ears before I knew it. It only took a few seconds each ear. My ears felt great, the most normal they felt in 2 months. I asked her if my eardrums looked okay and if there was any fluid. She told me they looked good, only slight fluid behind the right eardrum, but it was clear fluid and "not a concern". She told me to do Afrin nose spray for 3 days to clear it. I drove away so happy and thought my ear ordeal was over. Well, 2-3 days later, I developed some sound sensitivity, as well as very itchy and painful ears. I called her office. She told me "this can be normal after microsuction, your ears are adjusting after having that stuff on them". I asked her since pain and itchiness was there, should I start an antibiotic just to ensure no infection starts. She says NOPE. Fast forward a week and a half later, that "no concern" clear fluid in right ear turned into a full blown ear infection. Right ear was full of fluid with budging eardrum, left ear was red with some fluid. HELLO first ring in right ear. High electrical static hiss. Three days after the ringing started, I was put on Augmentin. That cleared the infection, but the ring was still there. Checked hearing, it was fine (but of course only checked up to 8000 Hz). She put me on a steroid taper pack. No change. Completed MRI, clear. If all of this wasn't enough, I then caught a cold the following week. That is when one ring started turning into more than one, and tinnitus entered my left ear.

Fast forward to present day. I'm around 10 weeks in, and I have multi-tone reactive tinnitus. 3-4 sounds in right ear, 2-3 in left ear and 1-2 distortions. My right ear is worse and more reactive than my left. When I am around sound, I have no pain or loudness sensitivity, but the tinnitus is so reactive. The high static gets triggered and shoots up just by the shower, TV, driving in the car. None of the other rings try to compete with noise, but once I go from the shower or the car into a quiet room, it's like the tinnitus comes down from the static and the tones start coming out and are at their loudest. The ringing has only gotten louder since it all started, but I am blessed enough to say it doesn't go above a 5/10. The reactivity is the worst and this all has brought my life to a complete stop. I am on a leave from work, not leaving the house much, taking 0.25mg Ativan at night to help me sleep, but sleep is still not great at all. I have panic thoughts every day, constantly researching, and terrified this won't get better. I just saw an Otologist last week, his recommendation was a CT scan and "Zoloft and therapy, see me in 3 months". (Not taking the Zoloft, if anything I will try low dose Remeron). It is crazy because each ENT told me "this will get better and improve", one even told me it will all go away based on how I got it!

I am praying so hard that no more sounds enter the chat, but I also was told that changing sounds, fluctuations, and a new sound doesn't mean it is "getting worse". It fluctuates a lot and that is very dependent on my surrounding sounds, but the tinnitus is always there and at least 2-3 rings are heard at a given time. I am working with functional medicine doctors to help lower whole body inflammation and getting tested for mold and other things. I know 10 weeks in from bad ear inflammation and infection isn't "that long" and I have room and time for this to very much improve, but the reactivity makes this much more unbearable as it has me terrified to aggravate it, therefore I am not living my life, and it all sends me down "this will never get better" paths. All we wanted to do for 3 years was try to have a child. And now here I am in a situation where driving in the car aggravates my ears, let along taking care of a child.

That's my story. Sorry for the length, but there was A LOT of factors at play that I couldn't just simply say "ear infection". Would love any positive feedback and advice.

 

[Joe Cuber]

Hey there @ErikaS, welcome to the forum. I wanted to say that I reacted to my onset was very similar to your reaction, high anxiety, worried that it would get worse, wondering how I could function with the noise and the reactivity. ai also took Ativan to help me sleep (I no longer take it, and I'm also tapering off of Zoloft now). I remember when my reactivity was at it's peak at about 2 months since onset, I couldn't attend my children's birthday parties at a local park because every little noise caused my reactivity to go berserk.

I wanted to tell you that my reactivity had gotten a lot better. I'm 7 months since onset, and I started seeing improvements in my reactivity at around 4 months. I still have it. Some days it's present and gets set off by certain high-pitched noises. Other days it's hardly reactive at all. But overall, it's nowhere near where it was at it's peak. I can readily go to parks and watch my kids play soccer without thinking about my reactivity.

One thing I did on the advice of a few audiologists was to not overprotect my ears. I slowly exposed myself to ambient noise by listening to nature sound videos for short periods of time, taking short walks around the neighborhood, visiting parks briefly, and so on, upping my exposure slowly over time without pushing my reactivity to far each time.

I hope you start seeing improvements. Keep us updated on how you're doing, and try to stay positive. Finding ways to get good sleep and address your anxiety will help out a lot.

 

[ErikaS]

Hey there @ErikaS, welcome to the forum. I wanted to say that I reacted to my onset was very similar to your reaction, high anxiety, worried that it would get worse, wondering how I could function with the noise and the reactivity. ai also took Ativan to help me sleep (I no longer take it, and I'm also tapering off of Zoloft now). I remember when my reactivity was at it's peak at about 2 months since onset, I couldn't attend my children's birthday parties at a local park because every little noise caused my reactivity to go berserk.

I wanted to tell you that my reactivity had gotten a lot better. I'm 7 months since onset, and I started seeing improvements in my reactivity at around 4 months. I still have it. Some days it's present and gets set off by certain high-pitched noises. Other days it's hardly reactive at all. But overall, it's nowhere near where it was at it's peak. I can readily go to parks and watch my kids play soccer without thinking about my reactivity.

One thing I did on the advice of a few audiologists was to not overprotect my ears. I slowly exposed myself to ambient noise by listening to nature sound videos for short periods of time, taking short walks around the neighborhood, visiting parks briefly, and so on, upping my exposure slowly over time without pushing my reactivity to far each time.

I hope you start seeing improvements. Keep us updated on how you're doing, and try to stay positive. Finding ways to get good sleep and address your anxiety will help out a lot.

@Joe Cuber, thank you so much for your reply, Joe. It's so hard to deal with. And I make sure to not over protect, I don't put protection on at home unless a loud noise is present, and I always have something going in the background, whether it's the sound of our heater, TV on very low, etc.

So interesting that it peaked at its worst for your around 2-3 months. That's where I am at in my timeline, and it's just very hard to think that's "okay" because you figure it should be getting better as time goes on.

How is your tinnitus? Also, did Zoloft affect your tinnitus at all in a negative way? Thank you again for the reply.

 

[Joe Cuber]

Hi @ErikaS, hope you're fairing well. The approach you're taking with sound enrichment by having background sound all the time is the approach I have taken. I hope it works well for you.

So interesting that it peaked at its worst for your around 2-3 months. That's where I am at in my timeline, and it's just very hard to think that's "okay" because you figure it should be getting better as time goes on.

Yeah it surprised me that the reactivity got worse for me around the 2nd through 4th month. It wasn't too bad the first month. And it started slowly getting better after the 4th. The improvement wasn't linear--some days I had high reactivity, some days low. Over time though, it's generally gotten better. I just went out to a restaurant this evening and my reactivity barely reacted. I don't know why it peaked between the 2nd and 4th months, but I was totally worried about it and had panic attacks. That's when I would lean on Ativan during the day.

I was taking Zoloft ever since the 1st month. This Friday will be my last dose since I'm tapering off of it now. Zoloft has had no effect on my tinnitus. It's had a marked effect on stabilizing my mood. I was able to wean off of Ativan because Zoloft became enough to keep my anxiety from spinning out of control (I was also taking a CBT course too, which helped my mood a lot).

As for my tinnitus, I now have mild reactivity, which is in both ears. I also have a loud squeally high-pitched electric hiss in my right ear that strangely enough is on or off by the day. So some days it's present and other days it's totally absent. It's highly somatic. I haven't figured out exactly why it has this pattern, but I suspect it has to do with my neck muscles on the right sight--they're pretty tight, unlike my left side. Overall, though, my quiet days are outnumbering my bad days. At onset, I was getting 2 quiet days a week. Recently, I've been getting 5 quiet days a week.

Oh, one thing I wanted to mention to you is that I too took time off of work--like 3 months off. I couldn't imagine working with the amount of anxiety and depression I was going through. And I thought my future was over. If someone told me that I'd ever be back on my feet again, back at work, doing my hobbies, planning trips with my family, I would have not believed them at all. But things did get better. Not just the tinnitus improving, but my reaction to it and my acceptance of it as part of my present. It takes a lot of effort to build resiliency and acceptance, but you can do it. I think you can have all that you were striving for, if having a child is still a goal of yours. It might be hard to imagine, but I believe you'll get better--either it improves or you become more resilient or both.

 

[ErikaS]

@Joe Cuber, I really appreciate you sharing all that with me. It gives me comfort that my current state is not going to be my permanent state. It's so hard to see outside of it, but your stories and others prove it can and does get better. So happy for you that you've made the progress you have and are now able to wean off of Zoloft. My ENT recommended Zoloft to me. I have not taken it yet, but am considering starting.

I have taken a leave from work. I am a school speech therapist, so I definitely could not fulfill my duties and do my job given my current state. I will most likely be taking the remainder of the year off. This obviously has helped overall stress, but my every day life coming to a complete halt was in itself anxiety and panic inducing. I don't want to be unable to work and not go about my everyday life. It's just so crazy that the fact if my ears weren't ringing, or if I even had 1-2 quiet, non reactive rings, I would be living my life instead of completely adjusting my life to this awful situation. I just want it to start to improve, so I hope those days are in the near future.

Thank you again for your insight and feedback. I hope by my month 7 I am in a very similar mindset and state as you!

 

[Joe Cuber]

Sure thing @ErikaS, I hope you are able to find ways to calm your anxiety. Medication is a personal choice. I can understand the hesitation on whether or not to take it. I found that figuring out ways to sleep well (like going to bed the same time every night and playing nature sounds at night), focusing on the positives, and focusing on things you can control, like what you eat (heck, I used to sweep the back patio every day to give me a sense of accomplishment), and meditating a lot all helped me overcome anxiety. And taking a course in CBT. There's a popular thread here on Tinnitus Talk called Back to Silence. That really helped me overcome my anxiety. Check it out if you can.

It's just so crazy that the fact if my ears weren't ringing, or if I even had 1-2 quiet, non reactive rings, I would be living my life instead of completely adjusting my life to this awful situation.

I totally know what you mean. Talk about having your whole world flipped upside down.

I just want it to start to improve, so I hope those days are in the near future.

If I could talk to myself 7 months ago, I'd tell myself: "Be patient. Try not to hyperfocus on it and monitor its every quality and change. Treat yourself with kindness--you didn't do anything wrong. Accept that it's with you at least for now and at least for a while more, you don't have to like it but don't deny it. Build resiliency by making small wins--going for walks, managing a sleep routine, doing chores around the house, learning something new, helping others. Don't fixate on the worst outcomes, they're not likely to happen. And it takes effort, but you will be stronger."

I hope by my month 7 I am in a very similar mindset and state as you!

I hope so too! Keep us updated on your progress

 

[Uklawyer]

@ErikaS - how is "The Way Out" going? I think Alan Gordon is great. The whole mindbody thing seems to make a lot of sense - and tinnitus is referenced by a number of practitioners.

Do you associate with the personality type that is susceptible to getting TMS - perfectionism, goodism, childhood events, keeping things inside, caretaker, puts others before herself? Any other physical symptoms that are ongoing or come and go?

Best wishes.

 

[ErikaS]

@ErikaS - how is "The Way Out" going? I think Alan Gordon is great. The whole mindbody thing seems to make a lot of sense - and tinnitus is referenced by a number of practitioners.

Do you associate with the personality type that is susceptible to getting TMS - perfectionism, goodism, childhood events, keeping things inside, caretaker, puts others before herself? Any other physical symptoms that are ongoing or come and go?

Best wishes.

Hey @Uklawyer, I am about half way through the book. It is a very informative read! @OnlyUP recommended it and she herself spoke with him. Alan Gordon acquired tinnitus with his many other chronic symptoms and he was able to get rid of it. Since mine came on with sudden damage/loss on my right ear from ear infection, I don't know if I will be able to completely "rid it" just through the mind body approach, but I do believe it could absolutely help decrease it and manage it.

I do relate to some of those categories that fall under the TMS. Not all, but definitely can see how it affects situations such as these. If it weren't for my ears ringing, I do not experience any other chronic pain issues, my sleep was completely wrecked by tinnitus, but it was fine before I got it. Basically, if it weren't for the ear infection that gave me tinnitus, I'd be a working, very functioning adult with no physical complaints.

How about you? Have you read the book? Have you tried any mind-body approach therapies or interventions?

 

[Uklawyer]

Hey @Uklawyer, I am about half way through the book. It is a very informative read! @OnlyUP recommended it and she herself spoke with him. Alan Gordon acquired tinnitus with his many other chronic symptoms and he was able to get rid of it. Since mine came on with sudden damage/loss on my right ear from ear infection, I don't know if I will be able to completely "rid it" just through the mind body approach, but I do believe it could absolutely help decrease it and manage it.

I do relate to some of those categories that fall under the TMS. Not all, but definitely can see how it affects situations such as these. If it weren't for my ears ringing, I do not experience any other chronic pain issues, my sleep was completely wrecked by tinnitus, but it was fine before I got it. Basically, if it weren't for the ear infection that gave me tinnitus, I'd be a working, very functioning adult with no physical complaints.

How about you? Have you read the book? Have you tried any mind-body approach therapies or interventions?

Hi @ErikaS, good to hear you are enjoying the book. I haven't read it yet, but I would suggest you also listen to the podcast Alan did with Alon Ziv. He explains things really well and the mix between conversation with Alon (neuroscientist) and discussion with the caller is really well done. There is an episode of someone with anxiety and the exercise he does with her is really good - you could try it when you are feeling uncomfortable.

I am reading John Sarno, who came up with the TMS theory (stemming from Freud's work on repression). I am on a second book of his and also read a great book by an individual who used his work to get better (Steve Ozanich - The Great Pain Deception). Steve had tinnitus along with a myriad other symptoms - as did Alan.

Learning to calm your nervous system and reduce the fear cycle will undoubtedly be of benefit to you.

Out of interest: how do you feel when you are into your reading?

Best wishes.

 

[ErikaS]

Hi @ErikaS, good to hear you are enjoying the book. I haven't read it yet, but I would suggest you also listen to the podcast Alan did with Alon Ziv. He explains things really well and the mix between conversation with Alon (neuroscientist) and discussion with the caller is really well done. There is an episode of someone with anxiety and the exercise he does with her is really good - you could try it when you are feeling uncomfortable.

I am reading John Sarno, who came up with the TMS theory (stemming from Freud's work on repression). I am on a second book of his and also read a great book by an individual who used his work to get better (Steve Ozanich - The Great Pain Deception). Steve had tinnitus along with a myriad other symptoms - as did Alan.

Learning to calm your nervous system and reduce the fear cycle will undoubtedly be of benefit to you.

Out of interest: how do you feel when you are into your reading?

Best wishes.

That's awesome, @Uklawyer. Thank you for sharing those resources; I will definitely look into them. When I am reading the book, I feel a sense of hope for sure which uplifts my mood and lets me know "it won't be like this forever". Being 4.5 months in, mood stability is still hard day in and day out, so I'm trying to find healthy avenues to help with this.

What is REALLY holding me back and keeping me in a fear cycle state is my very, very sensitive reactivity, and the fact that I have multi tones that are so high frequency makes this aspect even harder. It doesn't just get aggravated with any sound, it's also with heart rate/blood flow increasing. And when it gets aggravated, it only goes high in frequency and becomes more intrusive, especially when I part from or stop whatever has aggravated it. If I didn't have this reactivity, I wouldn't be doing too bad because it's not very loud, but it is 3-5 tones with different characteristics. So trying to stabilize my mood to very unstable, reactive tinnitus is very hard.

I started working with a functional medicine doctor to help bring down viral load and inflammation in the body. I have a TRT consult on the 25th of this month. I have also done craniosacral therapy to help me relax. I keep telling myself with these interventions, I'm physically addressing appropriate areas to aide relief, which will help my mental state and allow me to tap into those mind-body areas more, and hopefully it all can work together.

 

[Uklawyer]

What is REALLY holding me back and keeping me in a fear cycle state is my very, very sensitive reactivity, and the fact that I have multi tones that are so high frequency makes this aspect even harder. It doesn't just get aggravated with any sound, it's also with heart rate/blood flow increasing

Is it the increased heart rate that aggravates the sound - or is it the sound that increases the heart rate? I.e. is fear driving an increased awareness of reactivity?

It is certainly very discomforting when there is a reaction to sounds. I think mine came on after a few months. That, on its own, can go - independently of the underlying tinnitus.

Do whatever you can to relax. Try not to push too hard for recovery. I'd do what you can to help you to relax, to tell your brain that you are and will be okay. Meditation with soft music is helpful, as are meditation/visualisation - something like Joe Dispenza (imaging being healthy and the accompanying feelings of gratitude/joy etc) if you sare familiar with his work.

Do you get lost in the reading? Do you focus on that and leave your tinnitus aside at all?

 

[ErikaS]

Is it the increased heart rate that aggravates the sound - or is it the sound that increases the heart rate? I.e. is fear driving an increased awareness of reactivity?

It is certainly very discomforting when there is a reaction to sounds. I think mine came on after a few months. That, on its own, can go - independently of the underlying tinnitus.

Do whatever you can to relax. Try not to push too hard for recovery. I'd do what you can to help you to relax, to tell your brain that you are and will be okay. Meditation with soft music is helpful, as are meditation/visualisation - something like Joe Dispenza (imaging being healthy and the accompanying feelings of gratitude/joy etc) if you sare familiar with his work.

Do you get lost in the reading? Do you focus on that and leave your tinnitus aside at all?

Unfortunately, it's the increased heart rate/blood flow. Something that I enjoy and try to find peace during is taking my dog for a walk, and just that makes it increase. And just walking up and down my steps with laundry. Like I said, it's so sensitive and I struggle with this the most. I get frustrated too that it will be 5 months soon and the reactivity has not improved, and I don't overprotect but any means. I rarely ever wear earplugs, I go into stores only when needed but still no earplugs. I don't attend restaurants or bars or social gatherings. So that's why I want to look into TRT. @Marin wrote back to me that two women who had bad reactivity found a lot of success with desensitization through TRT.

With all of that aside, I know it is very important to calm the mind and body. I have better days in doing this, then not. Sometimes when I read I am able to push it aside, yes.

How are you doing with this approach? What is your tinnitus like? Have you felt it's been helpful in many ways?

 

[Uklawyer]

Unfortunately, it's the increased heart rate/blood flow. Something that I enjoy and try to find peace during is taking my dog for a walk, and just that makes it increase. And just walking up and down my steps with laundry. Like I said, it's so sensitive and I struggle with this the most. I get frustrated too that it will be 5 months soon and the reactivity has not improved, and I don't overprotect but any means. I rarely ever wear earplugs, I go into stores only when needed but still no earplugs. I don't attend restaurants or bars or social gatherings. So that's why I want to look into TRT. @Marin wrote back to me that two women who had bad reactivity found a lot of success with desensitization through TRT.

With all of that aside, I know it is very important to calm the mind and body. I have better days in doing this, then not. Sometimes when I read I am able to push it aside, yes.

How are you doing with this approach? What is your tinnitus like? Have you felt it's been helpful in many ways?

Heart rate and blood flow do not really make sounds that you should be hearing though. Have you looked at pulsatile tinnitus - had an ENT check for this?

Either way, it's not a race. It can be a lot slower than we would like, unfortunately. All we can do is try to slow ourselves down as much as we can, and try to acknowledge the sounds when we become aware of them, and then tell ourselves that it is okay, that we are okay, and then try to return to other activity.

During my severe phase, I had 3 sounds I think, including a horrible chainsaw-type sound. I had some reactivity a bit later. Now it is much better. Sounds evolved a number of times. I think the approach is really good. Essentially, we have had a massive shock to the system, which has put our systems on red alert, which means that our autonomic nervous systems are in a chronic state of fight/flight/freeze. It makes sense that with tinnitus, we cannot run from it (flight) nor can we fight it to get rid of it (fight), so we are caught in a type of freeze response. From what I have read, is is this freeze response (no way of getting rid of that nervous energy/fear generated by the noise we hear) that results in the repression of the nervous energy/ fear/stress - which, according to TMS theory, can result in, or maintain, physical symptoms, including tinnitus. The symptom then creates more fear, and so the cycle continues.

So we have to find a way to de-activate this fear response that feeds back into and reinforces the physical symptom. That is where the TMS work and stuff that Alan Gordon talks about is really helpful. We become aware of the symptom. We remind ourselves that emotions including fear in our unconscious are driving it (and even creating it) and that our bodies are absolutely fine. We tell ourselves that we are safe (rather than react with more fear) and do something to reinforce this sense of safety (somatic tracking, mindful breathing, visualisation) and "lean into" (i.e. really feel and appreciate) the nice, calming feelings we get as a result and repeat in order to retrain the brain.

This is neuroscience - with proven results, as is TMS, and what I read makes so much sense. You might compare it to habituation, where the neuroplastic brain rewires itself to eliminate awareness of the signals we hears as tinnitus. I think it is the same thing - we are not habituating we are eliminating the sensation generated by the brain (just as with physical pain of TMS origin, we are eliminating the pain signals).

I think that belief in the mindbody process, and just understanding the mindbody link has helped me a lot. I also use the Curable app. I focus less on the noise and when aware of it, I am reminded why it is there and find that I don't need to dwell on it like I used to and can move away from it mostly. Just a note: many people with TMS symptoms think that everything is great in their lives and believe they have no stress. Upon further investigation, stuff emerges from childhood or around their tendencies to perfection, control, people pleasing, caretaking, always seeming happy/content etc. It could be worth reading a little more to see if you identify with any traits of those that seems most likely to get TMS. Either way, and whether this can be traced to TMS or not, the techniques and theory have their application to the tinnitus-fear cycle!

 

[ErikaS]

Heart rate and blood flow do not really make sounds that you should be hearing though. Have you looked at pulsatile tinnitus - had an ENT check for this?

Either way, it's not a race. It can be a lot slower than we would like, unfortunately. All we can do is try to slow ourselves down as much as we can, and try to acknowledge the sounds when we become aware of them, and then tell ourselves that it is okay, that we are okay, and then try to return to other activity. My one therapist thinks it's very much linked to sympathetic system.

During my severe phase, I had 3 sounds I think, including a horrible chainsaw-type sound. I had some reactivity a bit later. Now it is much better. Sounds evolved a number of times. I think the approach is really good. Essentially, we have had a massive shock to the system, which has put our systems on red alert, which means that our autonomic nervous systems are in a chronic state of fight/flight/freeze. It makes sense that with tinnitus, we cannot run from it (flight) nor can we fight it to get rid of it (fight), so we are caught in a type of freeze response. From what I have read, is is this freeze response (no way of getting rid of that nervous energy/fear generated by the noise we hear) that results in the repression of the nervous energy/ fear/stress - which, according to TMS theory, can result in, or maintain, physical symptoms, including tinnitus. The symptom then creates more fear, and so the cycle continues.

So we have to find a way to de-activate this fear response that feeds back into and reinforces the physical symptom. That is where the TMS work and stuff that Alan Gordon talks about is really helpful. We become aware of the symptom. We remind ourselves that emotions including fear in our unconscious are driving it (and even creating it) and that our bodies are absolutely fine. We tell ourselves that we are safe (rather than react with more fear) and do something to reinforce this sense of safety (somatic tracking, mindful breathing, visualisation) and "lean into" (i.e. really feel and appreciate) the nice, calming feelings we get as a result and repeat in order to retrain the brain.

This is neuroscience - with proven results, as is TMS, and what I read makes so much sense. You might compare it to habituation, where the neuroplastic brain rewires itself to eliminate awareness of the signals we hears as tinnitus. I think it is the same thing - we are not habituating we are eliminating the sensation generated by the brain (just as with physical pain of TMS origin, we are eliminating the pain signals).

I think that belief in the mindbody process, and just understanding the mindbody link has helped me a lot. I also use the Curable app. I focus less on the noise and when aware of it, I am reminded why it is there and find that I don't need to dwell on it like I used to and can move away from it mostly. Just a note: many people with TMS symptoms think that everything is great in their lives and believe they have no stress. Upon further investigation, stuff emerges from childhood or around their tendencies to perfection, control, people pleasing, caretaking, always seeming happy/content etc. It could be worth reading a little more to see if you identify with any traits of those that seems most likely to get TMS. Either way, and whether this can be traced to TMS or not, the techniques and theory have their application to the tinnitus-fear cycle!

Thank you for all the insight, it's much appreciated and definitely helpful in times of despair and fear.

It's not that the increased heart rate and blood flow make their own sounds, it makes my tinnitus more intrusive and aggravated. Almost like many here have said how working out spikes their reactive tinnitus, as well as intimacy.

I see your tinnitus developed 2 years ago. Do you still have those 3 tones or has it evolved into something you'd say is more manageable? Especially with the brain-body connection thought process?

I should have mentioned to you - I am also doing some Neurofeedback that is specific to tinnitus but also for brain retraining fight/flight. Essentially, we first started with engagement of the parasympathetic system and "turning that up", now we are moving into salience areas that are sympathetic and we will be "turning those down". Then, we move into auditory cortex and memory. This is to help the brain push the sounds out of importance to "not important, we can ignore". It's working with slow brainwaves. I wanted to try this as it is a type of brain retraining and thought it may assist me in doing my part.

 

[Uklawyer]

Thank you for all the insight, it's much appreciated and definitely helpful in times of despair and fear.

It's not that the increased heart rate and blood flow make their own sounds, it makes my tinnitus more intrusive and aggravated. Almost like many here have said how working out spikes their reactive tinnitus, as well as intimacy.

I see your tinnitus developed 2 years ago. Do you still have those 3 tones or has it evolved into something you'd say is more manageable? Especially with the brain-body connection thought process?

I should have mentioned to you - I am also doing some Neurofeedback that is specific to tinnitus but also for brain retraining fight/flight. Essentially, we first started with engagement of the parasympathetic system and "turning that up", now we are moving into salience areas that are sympathetic and we will be "turning those down". Then, we move into auditory cortex and memory. This is to help the brain push the sounds out of importance to "not important, we can ignore". It's working with slow brainwaves. I wanted to try this as it is a type of brain retraining and thought it may assist me in doing my part.

You are very welcome.

So you notice that increased heart rate causes reactivity? Or do you mean that it spikes your tinnitus? I am guessing the second as the first does not appear to make any sense (reactivity is to sounds so far as I know l). It might just be confusion over terms used to describe different phenomena. When I talk of reactive tinnitus, I mean that when certain sounds are heard my ears react by adding a sound over the top of them e.g., I would hear a hair dryer but with a whistling sound over the top. Some will call this sound distortion or 'dysacusis'.

In answer to your question, I no longer have those 3 tones. My tinnitus changed a lot over time. I would say I have 1-2 tones now. I don't really distinguish anymore ( I did have a return of a distinctive beeping type sound but that has more or less gone now). Now it is more of a hiss with but of a lower warbling from time to time. I would say volume seems lower and general awareness has gone down. I fall asleep much better now and sleep pretty well through through the night. I am still aware of a bit of noise when waking, but try to not give it too much attention if I wake during the night. I also may have a somatic element with teeth clenching at night that makes it a bit more noticeable on waking.

So I'd say it's much better and the mindbody stuff is helping with the process of not feeding fear and moving toward calm and feelings of safety and even less attention.

Your Neurofeedback sounds really interesting and directed. You find it working with restoring parasympathetic/sympathetic balance? And it helps with and measures slowing of brainwaves?

You sound like you are doing lots to help. Good for you.

 

[Jackson Brady]

You are very welcome.

So you notice that increased heart rate causes reactivity? Or do you mean that it spikes your tinnitus? I am guessing the second as the first does not appear to make any sense (reactivity is to sounds so far as I know l). It might just be confusion over terms used to describe different phenomena. When I talk of reactive tinnitus, I mean that when certain sounds are heard my ears react by adding a sound over the top of them e.g., I would hear a hair dryer but with a whistling sound over the top. Some will call this sound distortion or 'dysacusis'.

In answer to your question, I no longer have those 3 tones. My tinnitus changed a lot over time. I would say I have 1-2 tones now. I don't really distinguish anymore ( I did have a return of a distinctive beeping type sound but that has more or less gone now). Now it is more of a hiss with but of a lower warbling from time to time. I would say volume seems lower and general awareness has gone down. I fall asleep much better now and sleep pretty well through through the night. I am still aware of a bit of noise when waking, but try to not give it too much attention if I wake during the night. I also may have a somatic element with teeth clenching at night that makes it a bit more noticeable on waking.

So I'd say it's much better and the mindbody stuff is helping with the process of not feeding fear and moving toward calm and feelings of safety and even less attention.

Your Neurofeedback sounds really interesting and directed. You find it working with restoring parasympathetic/sympathetic balance? And it helps with and measures slowing of brainwaves?

You sound like you are doing lots to help. Good for you.

Sorry to hijack the thread, but @Uklawyer, what helped you reduce your tinnitus besides the time?

Also the conversation on TMS is amazing, I'll be looking into it too.

 

[Uklawyer]

Hi @Jackson Brady. Time is key in healing. But it is not just the passing of time. For example, if you are desperate for your tinnitus to be manageable, gone or to have habituated within a certain amount of time, then you are setting a clock. You are watching the clock. What you are doing is placing pressure on yourself to "get better" within a prescribed period. Guess what pressure equals? Fear (or stress). That fear or stress then feeds right back into the fear-noise cycle.

So one helpful element is "outcome independence". This means not looking for a particular outcome as part of the recovery. This extends not just to time limits, but also to results themselves ("I must be tinnitus free," "I need to be fully habituated"). As is frequently the case with these things, pushing, prescribing etc ends up paradoxically delaying improvement, because it is creating more pressure which leads to (and is born of) anxiety. Look at the Back to Silence thread, where the effect is to calm the nervous system and that state of hypervigilance by NOT monitoring NOT measuring, NOT comparing (and not even describing) to avoid this trap. The net effect will be less attention paid to the tinnitus and more moments in which it is not noticeable.

On that note, focusing on the sounds/discomfort will certainly not help (unless done mindfully). When we are uncomfortable with pain or other sensations, we tend to focus on them: again, we measure, we wonder if it's getting better or worse, ask what any strange external sounds are, whether they are tinnitus etc - we become sensitised to the sound. We are on high alert, scanning our bodies and environment; tense, on edge. In addition to heightening awareness and perception of the sounds, we are also taking ourselves away from other thoughts and feelings of a pleasurable nature. So another thing that helps is to be aware of when we are having any moments of pleasure and to "lean into" them. For example savouring a nice meal; enjoying a warm shower or a walk in nature; time spent with friends. The pleasant sensation of our breath is supposed to send signals of safety to our brains. Though it is hard when we are in pain and suffering, movement towards these things can help break negative cycles, calm our systems and weaken the stranglehold of the symptoms.

Mindfulness can help if we are feeling up to it/in a calmer state of mind. That is taking the time to just observe the sensations of the noise with gentle curiosity and without reading anything else into them. Just being aware, letting them do what they want, without wanting to stop them or change them whilst telling ourselves that we are safe is a calm way of exposing ourselves to the sensations without attaching fear or any other negative emotion to them.

So doing anything that gently acknowledges the sounds, not putting pressure on myself around recovery, doing other things that help me to feel relaxed. or good in any way, telling myself that I am safe and practising stuff to lessen any fear reaction I find helpful. I think these concepts are mentioned here under themes such as acceptance, distraction, meditation, sound enrichment, back to silence and the like. From my current reading, fear is the driver and doing things to calm the nervous system is key to changing our relationship with this.

I have read about people who have applied techniques to dealing with symptoms and have successfully conquered them - including instances of tinnitus. The TMS stuff is really interesting and could well apply to cases of tinnitus - and the techniques can only help in any event.

 

[Joe Cuber]

Hi @Jackson Brady. Time is key in healing. But it is not just the passing of time. For example, if you are desperate for your tinnitus to be manageable, gone or to have habituated within a certain amount of time, then you are setting a clock. You are watching the clock. What you are doing is placing pressure on yourself to "get better" within a prescribed period. Guess what pressure equals? Fear (or stress). That fear or stress then feeds right back into the fear-noise cycle.

So one helpful element is "outcome independence". This means not looking for a particular outcome as part of the recovery. This extends not just to time limits, but also to results themselves ("I must be tinnitus free," "I need to be fully habituated"). As is frequently the case with these things, pushing, prescribing etc ends up paradoxically delaying improvement, because it is creating more pressure which leads to (and is born of) anxiety. Look at the Back to Silence thread, where the effect is to calm the nervous system and that state of hypervigilance by NOT monitoring NOT measuring, NOT comparing (and not even describing) to avoid this trap. The net effect will be less attention paid to the tinnitus and more moments in which it is not noticeable.

On that note, focusing on the sounds/discomfort will certainly not help (unless done mindfully). When we are uncomfortable with pain or other sensations, we tend to focus on them: again, we measure, we wonder if it's getting better or worse, ask what any strange external sounds are, whether they are tinnitus etc - we become sensitised to the sound. We are on high alert, scanning our bodies and environment; tense, on edge. In addition to heightening awareness and perception of the sounds, we are also taking ourselves away from other thoughts and feelings of a pleasurable nature. So another thing that helps is to be aware of when we are having any moments of pleasure and to "lean into" them. For example savouring a nice meal; enjoying a warm shower or a walk in nature; time spent with friends. The pleasant sensation of our breath is supposed to send signals of safety to our brains. Though it is hard when we are in pain and suffering, movement towards these things can help break negative cycles, calm our systems and weaken the stranglehold of the symptoms.

Mindfulness can help if we are feeling up to it/in a calmer state of mind. That is taking the time to just observe the sensations of the noise with gentle curiosity and without reading anything else into them. Just being aware, letting them do what they want, without wanting to stop them or change them whilst telling ourselves that we are safe is a calm way of exposing ourselves to the sensations without attaching fear or any other negative emotion to them.

So doing anything that gently acknowledges the sounds, not putting pressure on myself around recovery, doing other things that help me to feel relaxed. or good in any way, telling myself that I am safe and practising stuff to lessen any fear reaction I find helpful. I think these concepts are mentioned here under themes such as acceptance, distraction, meditation, sound enrichment, back to silence and the like. From my current reading, fear is the driver and doing things to calm the nervous system is key to changing our relationship with this.

I have read about people who have applied techniques to dealing with symptoms and have successfully conquered them - including instances of tinnitus. The TMS stuff is really interesting and could well apply to cases of tinnitus - and the techniques can only help in any event.

You are epically wise @Uklawyer, you've said in one post better than I could have articulated--all the collective knowledge that I've been able to glean. Core to this approach is acceptance. Accepting what is happening today and not resisting it (by, say, expecting it to someday resolving) is key to begin changing the mindset. Acceptance isn't a one-time event. It's a daily practice, some days harder than others, and not linear. My turning point was the Back to Silence method. Intrinsic in the method is acceptance. I haven't yet succeeded at the method, but its mission of changing my reaction to my condition is accomplished. Thanks for your post, I'll be reading it every once in a while as a reminder of the technique.

 

[Uklawyer]

You are epically wise @Uklawyer, you've said in one post better than I could have articulated--all the collective knowledge that I've been able to glean. Core to this approach is acceptance. Accepting what is happening today and not resisting it (by, say, expecting it to someday resolving) is key to begin changing the mindset. Acceptance isn't a one-time event. It's a daily practice, some days harder than others, and not linear. My turning point was the Back to Silence method. Intrinsic in the method is acceptance. I haven't yet succeeded at the method, but its mission of changing my reaction to my condition is accomplished. Thanks for your post, I'll be reading it every once in a while as a reminder of the technique.

@Joe Cuber, thank you. I cannot take the credit for the discoveries of others, but I do see the application of the principles to tinnitus and do believe that they could be of benefit to many. I am happy that my explanation of the Back to Silence method aids in your understanding/application and hope that you can master it and this condition. (By the way I have an inkling that sleep apnea might be linked in some way to this state of hypervigilance/anxiety/central nervous system sensitisation - anxious people are known to be shallow breathers).

 

[Joe Cuber]

@Joe Cuber, thank you. I cannot take the credit for the discoveries of others, but I do see the application of the principles to tinnitus and do believe that they could be of benefit to many. I am happy that my explanation of the Back to Silence method aids in your understanding/application and hope that you can master it and this condition. (By the way I have an inkling that sleep apnea might be linked in some way to this state of hypervigilance/anxiety/central nervous system sensitisation - anxious people are known to be shallow breathers).

Sure thing @Uklawyer, it takes someone who's really immersed themselves into the lessons that can articulate them to us so well. I agree, I've been focusing quite a bit on how I can reduce my apneas as much as I can. I've cranked my CPAP machine up to 17 now, which has been helping. I think having more apneas causes higher anxiety during sleep--probably tied to why I wake up with a stiff neck despite how much I focus on good neck posture while lying down.