All I Wanted Was to Be a Mom — My Vent Story of How Tinnitus Has Broken My Life

[ErikaS]

I am 8 months post tinnitus onset with multiple tones/sounds and reactivity following within a month of onset. Some of you who follow me or come across some posts may have generally read what was going on in my life before this. I just need to vent my story to those who truly understand my current condition and how it can instantly change a very strong, resilient, mentally sound person into someone who claws their way through depression, anxiety, anger, and fear every day due to their life being flipped upside down and put on hold.

My husband and I hit 3 years of trying to build our family this past June. I inherited a very rare genetic anomaly called balanced translocation that affects the viability of my eggs. Any time I got pregnant, we only stood a 15-20% chance of it making it past heartbeat. We tried naturally, which led to no living child, but a miscarriage through an ectopic pregnancy that required surgery to remove the pregnancy and my left fallopian tube. We then moved to medical interventions. Had no luck with lower level interventions, so them moved to IVF. Within a span of 6 months, I completed 4 egg retrievals. Again, because many of my eggs are negatively affected by my genetic thing, it took a while to create viable embryos that would not miscarry. Out of 4 egg retrievals and a total of 23 embryos, we created 4 viable embryos. Our first viable embryo was created following our 3rd retrieval. This embryo meant the world and more to us. We thought about this embryo for 6 months until we could transfer in February of 2022. Despite everything looking perfect, the embryo did not "stick" and we lost her. Heartbreak, devastation, etc was all we felt for a few months after.

Fast forward to July 2022 and after many tests on myself and hormone therapies, we competed transfer #2. Again, despite a healthy embryo and uterine environment, this embryo did not make it either and we lost him. Following this failed transfer, and before I went back to work in September (speech/language therapist in a school) we decided to do another egg retrieval. Retrieval #5 brought us one more healthy embryo, but unfortunately I suffered a very rare complication during the retrieval which led to my right ovary bleeding internally. Before we knew this was even happening while on our way home from the egg retrieval, I started passing out in the car. I could not make it from the car to my front door without passing out. Ambulance was called, I get to the hospital, my blood pressure is 80/50. Blood transfusions are started, I go into surgery, and despite my doctor doing everything she could for over an hour, I lost my right ovary. They also took my right fallopian tube with my ovary, and because I have no left tube from previous ectopic pregnancy, I can no longer get naturally pregnant at the age of 33. I still have my left ovary which produces eggs, but the gift of falling naturally pregnant has been taken away from me. If I am to ever be pregnant, it has to be through an IVF embryo transfer.

A month after losing my ovary, I had some troubling ear issue stuff going on which was so out of the ordinary for me because I never had ear issues. I developed Eustachian Tube Dysfunction due to a bunch a meds, and I had tried some drops in my ears a few times to help soothe the feelings as I had been dealing with it for over 2 months. As I noticed my Eustachian Tubes were feeling better and opening, I noticed my ears still felt muffled and closed off. On August 26th, I went to an ENT who looked in my ears and said "you have like a pseudo-membrane over your ear drums, have you been using any drops?" I said I did a few times. So she used microsuction in each ear for 5-7 seconds to clear the oil drops that were stuck up against the eardrums. I instantly felt better. I did mention to her that my right ear felt a little full still, and she said "yes, I see some clear fluid behind the ear drum, almost like with allergies, take some allergy med and try Flonase, which should help clear it." I drove home thinking finally, my ear issues are coming to an end.

Two days later, I experience very itchy ears, and what I know now to be hyperacusis. I was at a restaurant with my husband, and his voice felt so loud and all around me was just too much for my ears. I call the doctor to let her know what I was experiencing. She said this can happen, especially because I had that light barrier up against my eardrums, so my ears were acclimating to sound again. Then I said to her "my right ear still feels full too, are you sure I don't need an antibiotic or something to help things calm down?" She assured me things would calm down on their own.

Within a couple of days the hyperacusis did completely calm down, I wasn't bothered by noises at all and was going about life normally, but my right ear felt fuller and fuller. A week later, with a very full feeling in right ear, my tinnitus makes its debut in the right ear. I go to a local clinic who tells me my right ear drum is bulging with so much infected fluid behind it. I get on Augmentin, the infection clears after 6-7 days, but the tinnitus stays. I make my way back to that ENT who checked my ears and hearing, stating all looked fine, and she suspected that "little high ring" to go away. About a month later after another virus or two, I am about 3-4 sounds deep bilaterally with reactivity or spiking tinnitus to sound, to the point I have to take a leave from my job and completely stop my life as I know it.

I now sit here, 8 months later, still in complete disbelief of the wrong side of rarities I have endured over the past 3 years. Quite a few very rare things have happened to me that led me to this spot, when all I was trying to do was become a mother. I'm a hard worker, a fun aunt, a caring daughter, a loyal and loving wife, and even when life threw punches, I'd have a cry or scream about it then I'd say to my husband "let's go grab some margaritas, let's go see some friends, or, let's watch some of our shows" and I'd carry on and be grateful for the life I had and my overall health that allowed me to do the things I was doing.

This condition has not only stopped life and our journey of becoming parents, but it has broken me. It has altered my mental state in ways I've never before experienced, even through all the loss and trauma with infertility situations. Ive thought scary things I never thought I would, and I've cried in utter fear and despair so many times. I've tried many things to try to help me improve just so I could function enough, but can't say I can report any improvements. As I fight this war, the world around me continues to move along. Couples getting pregnant, people living their lives normally, everyone getting excited for summer, and I am just stuck in a snow globe watching it all happen. Oh, and Mother's Day is in a week. It's just one dagger after another and I am mentally, emotionally, and physically exhausted of it all.

If you read all of this, I truly appreciate you listening to my vent story. Things have only gotten harder recently, so I thought maybe if I turn to writing and sharing with those who understand my current state, it would be therapeutic. I'm not giving up, I have my frozen embryos to fight for and a life I love way too much to leave, but it doesn't change how utterly exhausted I am of this awful condition and how it hasn't turned a corner with reactivity and spiking, leaving me debilitated and a shell of who I used to be.

 

[Jupiterman]

This is a very unfortunate series of events. As I read paragraph-by-paragraph, I could feel your agonising pain.

No one should ever have to go through this in a lifetime, nevermind three years. Life absolutely isn't fair, there is no ying to balance every yang. Bad things do happen to good people.

There appears to be so much uncertainty here and that is a gnawing agony about the future.

The joy of natural motherhood is a right-of-passage for any woman and it's so unfortunate this worry is piled on with your tinnitus, which isn't just tinnitus, it's TINNITUS. I capitalise it because it's reactive, variable and multi-tonal.

As you are 8 months in; that isn't the worst indicator as many have reduced reactivity beyond this point. Age is on your side as well so hopefully some natural healing will help you along the way to better times.

Do try and make the most of the good things you have in the present and try to let the time pass as best you can. As a similar tinnitus sufferer I know how difficult this is but I go on every day, day-by-day, as best I can.

 

[UKBloke]

As I fight this war

Erica, take it from me - someone who has had tinnitus for 30 years, quite severely since 2017, with the addition of hyperacusis for nearly 2 years that has caused my tinnitus to behave in reactive ways I didn't think possible:

Stop fighting.

As difficult as life is right now, try and take a breath with a view to slowly but surely re-framing your situation into one of tinnitus management.

 

[Hardwell]

It saddens me to read that, I had no idea the journey you had been through previously just to have to start this evil one too.

The way our tinnitus behaves is very similar and I've often drawn strength from seeing your resilience and passion for others whilst dealing with this. Seeing you going about life in an almost ordinarily fashion, going on holiday etc, it gave me encouragement. I really hope you're able to pick yourself up again and continue to be your true self, I have no doubts that you will in due course.

You've tried pretty much everything you can to try and solve your tinnitus struggles, but as research will tell you, it seems the best thing for tinnitus is time and there's nothing you can do to make time move faster. Maybe it could be beneficial for you to spend more time looking after your mental health and let nature take its course with your tinnitus healing?

I hope you feel better soon.

 

[ErikaS]

Erica, take it from me - someone who has had tinnitus for 30 years, quite severely since 2017, with the addition of hyperacusis for nearly 2 years that has caused my tinnitus to behave in reactive ways I didn't think possible:

Stop fighting.

As difficult as life is right now, try and take a breath with a view to slowly but surely re-framing your situation into one of tinnitus management.

I hear this, I guess my means of management were not the best. I very much limited noise exposure of the real world by not working, staying home a lot and only driving when necessary for the first 6 months, only doing small gatherings during holidays for short periods of time. I tried to take a "don't over protect, but limit sound exposure" approach, like a straight down the middle of what others have discussed and had improvement with. Where I went too far, was going to Mexico, even with protection it was too much too soon. So, I hope in time, and with taking a breather, I bounce back to my previous tolerances and improve from there. I know it will take time, I'm just exhausted of the trauma to my body and mind after 3 years. I did start DNRS to help rest the mind and limbic system, so hopefully that will bring me some inner peace eventually.

It saddens me to read that, I had no idea the journey you had been through previously just to have to start this evil one too.

The way our tinnitus behaves is very similar and I've often drawn strength from seeing your resilience and passion for others whilst dealing with this. Seeing you going about life in an almost ordinarily fashion, going on holiday etc, it gave me encouragement. I really hope you're able to pick yourself up again and continue to be your true self, I have no doubts that you will in due course.

You've tried pretty much everything you can to try and solve your tinnitus struggles, but as research will tell you, it seems the best thing for tinnitus is time and there's nothing you can do to make time move faster. Maybe it could be beneficial for you to spend more time looking after your mental health and let nature take its course with your tinnitus healing?

I hope you feel better soon.

Thank you. Oh how I wish our community could feel safe going onto an antidepressant and getting the benefits of it but not having to worry about how it affects our condition.

 

[ErikaS]

This is a very unfortunate series of events. As I read paragraph-by-paragraph, I could feel your agonising pain.

No one should ever have to go through this in a lifetime, nevermind three years. Life absolutely isn't fair, there is no ying to balance every yang. Bad things do happen to good people.

There appears to be so much uncertainty here and that is a gnawing agony about the future.

The joy of natural motherhood is a right-of-passage for any woman and it's so unfortunate this worry is piled on with your tinnitus, which isn't just tinnitus, it's TINNITUS. I capitalise it because it's reactive, variable and multi-tonal.

As you are 8 months in; that isn't the worst indicator as many have reduced reactivity beyond this point. Age is on your side as well so hopefully some natural healing will help you along the way to better times.

Do try and make the most of the good things you have in the present and try to let the time pass as best you can. As a similar tinnitus sufferer I know how difficult this is but I go on every day, day-by-day, as best I can.

I just want to thank you for your very empathetic response. I very much appreciate your words with regard to motherhood. And thank you for the positive points, so important to keep the positivity in mind when in such a wrecked mind state.

 

[BrysonKingMe]

@ErikaS, with complete respect, what is tinnitus stopping you from doing?

I can relate to your post, I traveled to Korea and spent about $15,000 in total on a complete flunk treatment.

My benzo-induced tinnitus at its worst was a high-pitched oscillating dentist drill/static screeching hissing noise that changed every 5 seconds in my head, and it was unmaskable.

It has improved a lot recently, with it mainly being a low level white noise static, but the hyperacusis I got at the end of the taper is completely unbearable and stops your life completely. I cannot watch TV, I cannot drive, I cannot speak to people right now.

I would honestly trade the tinnitus I had at its worst on benzos for the situation I'm in now.

This is not meant to be a, "look how bad my situation is" post, I inadvertently do this to myself anyways. But one thing I've learned about these auditory conditions is be very grateful for what you have and be grateful that it's not much worse, because it can always be much much worse. I wish I had made the most of my time while I was not completely disabled as I was constantly freaking out, the noises in my head during that taper were ungodly, but in the midst of freaking out about the noise in my head that realistically didn't stop me from doing anything, I lost everything.

If you are like me at all, you also compare your situation to others. This ruined me. I read everything and thought my tinnitus was noise-induced for 6 months. Look internally.

I read through your posts and you say your tinnitus is not loud, but reactive to sound, which can be distressing. Trying to distract yourself as much as possible, go outside, go camping, do activities that relax you where you cannot hear your tinnitus.

You'll be fine in the end of this.

 

[SarahMLFlemmer]

I hear this, I guess my means of management were not the best. I very much limited noise exposure of the real world by not working, staying home a lot and only driving when necessary for the first 6 months, only doing small gatherings during holidays for short periods of time. I tried to take a "don't over protect, but limit sound exposure" approach, like a straight down the middle of what others have discussed and had improvement with. Where I went too far, was going to Mexico, even with protection it was too much too soon. So, I hope in time, and with taking a breather, I bounce back to my previous tolerances and improve from there. I know it will take time, I'm just exhausted of the trauma to my body and mind after 3 years. I did start DNRS to help rest the mind and limbic system, so hopefully that will bring me some inner peace eventually.

Thank you. Oh how I wish our community could feel safe going onto an antidepressant and getting the benefits of it but not having to worry about how it affects our condition.

I am taking 50 mg of Amitriptyline every night just to sleep. What else can I do?

Thank you for sharing your story, Erika. I hope that you find peace, hope, and strength in the Lord. His promises are the only thing holding me together now. I am hoping to hear a success story with being granted a child of your own and how you told tinnitus to stick it! Much love girlfriend. I'm hanging in there with you. <3

 

[Joe Cuber]

Hey @ErikaS - I read through your post, thanks for sharing your story. I recall when you first arrived on the forum, you were explaining your challenges with starting a family, and I understood in the abstract what you must be going through. But hearing your story in detail here brings a depth to your struggle. I'm sorry to hear what you're going through, it's really heartbreaking to read. Your pregnancy challenges alone are heartbreaking enough. Tinnitus and hyperacusis add an incomprehensible layer of complexity to your life story. I know you're venting. We hear your story and hope dearly that things improve for you--an improvement to your condition, a more resilient you, ideally both.

I often think about how an affliction like this has a complexity of struggle--the physical and mental pain, the interference on concentration, the intrusion to the sense of self, the constraint on our goals. It saddens me that those who understand this the best are us, the ones that experience this.

 

[Ngo13]

I'm so sorry for your losses, @ErikaS. What you have had to deal with from your infertility issues to your tinnitus is not fair.

I can relate to your feelings of bad luck due to rare circumstances as well as your longing to be a mother. I longed to be a mother my whole life, and when it finally happened to me I only had a few short weeks before tinnitus, TTTS and hyperacusis came in and turned my life upside down. In fact, my onset was a stars-align story too (and was caused my my own newborn!) so much so that no doctors believed me. I also put our future family planning on hold as I try to navigate my tinnitus and figure out what I'm able to handle. Toddler tantrums with ear issues are no joke.

I don't see many young women in this space who seem to have families or want to start one. It's so much harder because on top of the shit that is ear problems we have hormone fluctuations to deal with and all the unknowns that comes with it, plus societal expectations of women and their roles as mothers. It's why I wanted to reach out and let you know, I hear you and I understand.

At 8 months I wasn't even close to ok. In fact, I was pretty suicidal, like even more so then at onset because I had lost hope that it would spontaneously go away. Its hard when you read so many stories of people improving or habituating in 6 months. I'm not even habituated now at 15 months in. I think I didn't start really feeling better until after the year mark, and I fully believe that's because I just had to live through my experiences in that year with tinnitus. Now that I've lived through every season, holiday, etc. I am not comparing them so much to pre-tinnitus.

Have you tried any sort of therapy? I started therapy around 8 months too and I don't even talk about my tinnitus and I honestly don't believe in the claims that it helps so much directly. However having been at it for over 6 months now, I believe it has helped indirectly with dealing with my ear issues. I'm only mentioning it to you as you seem to have been through a lot outside of tinnitus and addressing those feelings may help your overall health.

From what you've been through, I can tell you are a very strong, resilient person. Therefore I truly believe you will be able to get through this, too. If and when you decide to start trying for children again, I wish you all the baby dust in the world for your rainbow. A family member tried for 10 years with infertility issues and IVF before they got their miracle baby, at almost 40. Don't lose hope yet.

I'm still hopeful. I'm still hopeful we will get a viable treatment or cure, or spontaneous healing. Some may call it foolish but it's one of the only things keeping me going so I'm going to stick to it. Even if I have to wait a really long time. Meanwhile, I've decided to keep on living in spite of my tinnitus. Tomorrow isn't guaranteed and I just refuse to let it take me down today. Even though I do suffer every day, I also choose to find joy in the moments I can. I think it's very telling that almost everyone makes peace with this condition in their own way, even if it takes a long, long time. I'm sure you will too, in time. For now, be kind to yourself and give yourself credit for all you've been able to overcome.

 

[UKBloke]

I hear this, I guess my means of management were not the best.

I wouldn't be too hard on yourself. Tinnitus/hyperacusis is a difficult condition to navigate because the advice out there is often so varied. Inevitably we end up on a path of, trial and error styled self-management, where it's only natural mistakes will be made along the way. It's a slow learning process but eventually you'll find what works best for you.

 

[ErikaS]

@ErikaS, with complete respect, what is tinnitus stopping you from doing?

I can relate to your post, I traveled to Korea and spent about $15,000 in total on a complete flunk treatment.

My benzo-induced tinnitus at its worst was a high-pitched oscillating dentist drill/static screeching hissing noise that changed every 5 seconds in my head, and it was unmaskable.

It has improved a lot recently, with it mainly being a low level white noise static, but the hyperacusis I got at the end of the taper is completely unbearable and stops your life completely. I cannot watch TV, I cannot drive, I cannot speak to people right now.

I would honestly trade the tinnitus I had at its worst on benzos for the situation I'm in now.

This is not meant to be a, "look how bad my situation is" post, I inadvertently do this to myself anyways. But one thing I've learned about these auditory conditions is be very grateful for what you have and be grateful that it's not much worse, because it can always be much much worse. I wish I had made the most of my time while I was not completely disabled as I was constantly freaking out, the noises in my head during that taper were ungodly, but in the midst of freaking out about the noise in my head that realistically didn't stop me from doing anything, I lost everything.

If you are like me at all, you also compare your situation to others. This ruined me. I read everything and thought my tinnitus was noise-induced for 6 months. Look internally.

I read through your posts and you say your tinnitus is not loud, but reactive to sound, which can be distressing. Trying to distract yourself as much as possible, go outside, go camping, do activities that relax you where you cannot hear your tinnitus.

You'll be fine in the end of this.

As much as this vent of mine was to be vulnerable and explain my 3 year journey pre-tinnitus that was already shaking me, and to just share I am really struggling right now due to physical, emotional, and mental exhaustion, I guess I will further explain in detail what I "can't do" and how this is holding me still.

My first tinnitus sound that came on was an electric hiss in my right ear due to SSHL in 12-16 kHz in that ear. This sound oscillates between those ranges in both ears and head, and is very reactive, from me waking up, to moving my head in bed, to going on a walk outside, to turning on the TV even at low volumes. This sound becomes so intrusive that it feels like it's piercing and also my ears have an uneasy feeling with it as well. If I am just sitting in quiet, it still can be erratic. That's just that tone. My other sounds are like different car or signal alarms going off, ranging from lower frequency to mid frequencies. I also get some buzzing sounds in and out. Again, just the shift of my head lying in bed can change how all these present, I can make a sound in my left ear louder by just touching the canal of my right ear. Yes, I am absolutely blessed that, at baseline, all of this doesn't go above 4-5/10, except the electric one that knows no end to intrusiveness. However, they are all so sensitive to sound that they so easily spike and change presentation and become more shrill. This constant changing/fluctuating of pitch, shrill, intrusiveness, etc. has not changed since it all came on, except for recently in my setback/spike where it's all worsened some.

That leads me to now. I am in my first big setback where my sensitivity has gone up even more, my tinnitus is not resetting to its "normal morning presentation" overnight, and I am also experiencing inner ear vibrations that are either due to hyper-sensitive nerves from noise or medication. All of this does not allow me to watch TV, drive, shower, go for a walk etc without paying for it and exacerbating symptoms for quite some time after, and, seeming to affect how irritated it is the next morning. I couldn't drive or watch TV comfortably at all before this spike, but I would in small amounts try to build up tolerance, and, I would reset overnight so I could rely on that. That is not the current case.

I very much understand that I am very blessed and fortunate to not also have loudness or pain hyperacusis on top of this. If you have seen previous posts of mine, whether it be on my wall or someone else's, you will see I have always tried to stay more positive, spread love and support, and note that I am fortunate to not be worse. But that does not at all take away what I went through before this and where I currently am. I was literally healing from major abdominal scars that a woman gets from having a C-section birth, then I got the ear infection and then tinnitus. But no baby for me, it was to remove a part of me that was so important to the IVF/motherhood journey. I'm just spent in every way a woman could be in my position. Sometimes, we just need to vent.

 

[Eloy Resendez Jr]

So sorry for your struggles, life has a tendency to kick us around. The main thing I got from your story is, you are much stronger than you think. Just a reminder that most of us have so many other things going on in life than just tinnitus. You are not alone! Stay strong!

 

[BrysonKingMe]

As much as this vent of mine was to be vulnerable and explain my 3 year journey pre-tinnitus that was already shaking me, and to just share I am really struggling right now due to physical, emotional, and mental exhaustion, I guess I will further explain in detail what I "can't do" and how this is holding me still.

My first tinnitus sound that came on was an electric hiss in my right ear due to SSHL in 12-16 kHz in that ear. This sound oscillates between those ranges in both ears and head, and is very reactive, from me waking up, to moving my head in bed, to going on a walk outside, to turning on the TV even at low volumes. This sound becomes so intrusive that it feels like it's piercing and also my ears have an uneasy feeling with it as well. If I am just sitting in quiet, it still can be erratic. That's just that tone. My other sounds are like different car or signal alarms going off, ranging from lower frequency to mid frequencies. I also get some buzzing sounds in and out. Again, just the shift of my head lying in bed can change how all these present, I can make a sound in my left ear louder by just touching the canal of my right ear. Yes, I am absolutely blessed that, at baseline, all of this doesn't go above 4-5/10, except the electric one that knows no end to intrusiveness. However, they are all so sensitive to sound that they so easily spike and change presentation and become more shrill. This constant changing/fluctuating of pitch, shrill, intrusiveness, etc. has not changed since it all came on, except for recently in my setback/spike where it's all worsened some.

That leads me to now. I am in my first big setback where my sensitivity has gone up even more, my tinnitus is not resetting to its "normal morning presentation" overnight, and I am also experiencing inner ear vibrations that are either due to hyper-sensitive nerves from noise or medication. All of this does not allow me to watch TV, drive, shower, go for a walk etc without paying for it and exacerbating symptoms for quite some time after, and, seeming to affect how irritated it is the next morning. I couldn't drive or watch TV comfortably at all before this spike, but I would in small amounts try to build up tolerance, and, I would reset overnight so I could rely on that. That is not the current case.

I very much understand that I am very blessed and fortunate to not also have loudness or pain hyperacusis on top of this. If you have seen previous posts of mine, whether it be on my wall or someone else's, you will see I have always tried to stay more positive, spread love and support, and note that I am fortunate to not be worse. But that does not at all take away what I went through before this and where I currently am. I was literally healing from major abdominal scars that a woman gets from having a C-section birth, then I got the ear infection and then tinnitus. But no baby for me, it was to remove a part of me that was so important to the IVF/motherhood journey. I'm just spent in every way a woman could be in my position. Sometimes, we just need to vent.

I'm sorry, I didn't mean to come across like I was downplaying what you were going through, I apologize if I came across a bit harsh.

The best advice I can give you right now is to just distract, I doubt your tinnitus will be as crazy and erratic for the rest of your life. If you distract yourself now, things will fall into place naturally eventually. Don't focus on the day-to-day fluctuations or minute by minute fluctuations.

Unless you have ridiculous severe hyperacusis, a shower or watching TV is not going to permanently worsen your tinnitus.

 

[ErikaS]

I'm sorry, I didn't mean to come across like I was downplaying what you were going through, I apologize if I came across a bit harsh.

The best advice I can give you right now is to just distract, I doubt your tinnitus will be as crazy and erratic for the rest of your life. If you distract yourself now, things will fall into place naturally eventually. Don't focus on the day-to-day fluctuations or minute by minute fluctuations.

Unless you have ridiculous severe hyperacusis, a shower or watching TV is not going to permanently worsen your tinnitus.

Than you @BrysonKingMe, I appreciate it and your advice. Happy to hear that the electric crap is calming down, is that your only sound? I am truly sorry about your debilitating hyperacusis, I hope that in time you can start to introduce quiet sounds little by little. @Marin's recovery is always helpful to reread, I am sure you've read it yourself.

 

[hopefuldede]

@Erika, I feel your pain, grief and exhaustion through your words. You have taken all life has thrown at you and you keep swinging and swinging at it. Please don't lose hope of the potential for you to recover to a point of being able to live out your dreams of being a mom (or as we call it here, mammy). The prospect of this may seem to be a million miles away given your challenges but I believe this will still happen for you. I, like you, am just a shadow of my former self, this condition has robbed me (and all of us) of many opportunities, not least our peace of mind - we are with you in this fight. I am thinking of you and others on here who are getting it super tight at the minute. No one else but us truly understands.

 

[BrysonKingMe]

Than you @BrysonKingMe, I appreciate it and your advice. Happy to hear that the electric crap is calming down, is that your only sound? I am truly sorry about your debilitating hyperacusis, I hope that in time you can start to introduce quiet sounds little by little. @Marin's recovery is always helpful to reread, I am sure you've read it yourself.

No, I have anywhere between 2-10 sounds depending on how bad the pain is. I have read it, and I did not know how this condition worked, so I tried to push myself too hard. I was in a much better place in March.

 

[Bill Arsenault]

Thanks for sharing your story @ErikaS. It can definitely help others to try to stay strong and fight on.

Unfortunately you really gotta keep protecting your ears at this early stage and don't take too many unnecessary chances until you feel better or get some kinda perspective on this thing that you can accept it.

I hate saying it but you gotta let it play out for a while, one day at a time, and hopefully you start feeling better slowly but surely and bounce back yet one more time.

And then you can start figuring out ways to do some of the things your giving up now - but it's best to keep playing it safe for a while like you have been doing if you can.

You know that time has a way of making some things bearable so hang in there until the miracle happens.

I'm still waiting myself so now we can all wait together.

Best wishes Sis.

 

[ErikaS]

I'm so sorry for your losses, @ErikaS. What you have had to deal with from your infertility issues to your tinnitus is not fair.

I can relate to your feelings of bad luck due to rare circumstances as well as your longing to be a mother. I longed to be a mother my whole life, and when it finally happened to me I only had a few short weeks before tinnitus, TTTS and hyperacusis came in and turned my life upside down. In fact, my onset was a stars-align story too (and was caused my my own newborn!) so much so that no doctors believed me. I also put our future family planning on hold as I try to navigate my tinnitus and figure out what I'm able to handle. Toddler tantrums with ear issues are no joke.

I don't see many young women in this space who seem to have families or want to start one. It's so much harder because on top of the shit that is ear problems we have hormone fluctuations to deal with and all the unknowns that comes with it, plus societal expectations of women and their roles as mothers. It's why I wanted to reach out and let you know, I hear you and I understand.

At 8 months I wasn't even close to ok. In fact, I was pretty suicidal, like even more so then at onset because I had lost hope that it would spontaneously go away. Its hard when you read so many stories of people improving or habituating in 6 months. I'm not even habituated now at 15 months in. I think I didn't start really feeling better until after the year mark, and I fully believe that's because I just had to live through my experiences in that year with tinnitus. Now that I've lived through every season, holiday, etc. I am not comparing them so much to pre-tinnitus.

Have you tried any sort of therapy? I started therapy around 8 months too and I don't even talk about my tinnitus and I honestly don't believe in the claims that it helps so much directly. However having been at it for over 6 months now, I believe it has helped indirectly with dealing with my ear issues. I'm only mentioning it to you as you seem to have been through a lot outside of tinnitus and addressing those feelings may help your overall health.

From what you've been through, I can tell you are a very strong, resilient person. Therefore I truly believe you will be able to get through this, too. If and when you decide to start trying for children again, I wish you all the baby dust in the world for your rainbow. A family member tried for 10 years with infertility issues and IVF before they got their miracle baby, at almost 40. Don't lose hope yet.

I'm still hopeful. I'm still hopeful we will get a viable treatment or cure, or spontaneous healing. Some may call it foolish but it's one of the only things keeping me going so I'm going to stick to it. Even if I have to wait a really long time. Meanwhile, I've decided to keep on living in spite of my tinnitus. Tomorrow isn't guaranteed and I just refuse to let it take me down today. Even though I do suffer every day, I also choose to find joy in the moments I can. I think it's very telling that almost everyone makes peace with this condition in their own way, even if it takes a long, long time. I'm sure you will too, in time. For now, be kind to yourself and give yourself credit for all you've been able to overcome.

Thank you so much @Ngo13 for such a caring and supportive write up. I cannot imagine what you endured through your situation of finally getting your baby, but also getting this crap. Goes to show how tough we women / momas are. Hugs <3

@Erika, I feel your pain, grief and exhaustion through your words. You have taken all life has thrown at you and you keep swinging and swinging at it. Please don't lose hope of the potential for you to recover to a point of being able to live out your dreams of being a mom (or as we call it here, mammy). The prospect of this may seem to be a million miles away given your challenges but I believe this will still happen for you. I, like you, am just a shadow of my former self, this condition has robbed me (and all of us) of many opportunities, not least our peace of mind - we are with you in this fight. I am thinking of you and others on here who are getting it super tight at the minute. No one else but us truly understands.

Thank you so much @hopefuldede, I appreciate your empathy and positivity for hope in the future. Praying we all get the treatment/cure we deserve in the near future.

 

[gameover]

So sorry to read it @ErikaS. I do not know what to write. I hope things will turn out well for you.

 

[Ed209]

Hi @ErikaS, I read through your post in disbelief at what you've had to endure. I'm so sorry that life has been so cruel to you. As far as your hearing issues go, it's very common that people start experiencing tinnitus and hyperacusis after prolonged stressful events. It seems the perfect recipe for this storm is heightened stress in combination with dangerously loud sound, and/or an infection, or other such trauma to the ear.

You have to stop fighting against it and accept what you have now as the new norm. From my experience, it is the only way you will get yourself out of this hole. The more you fight it, the more you'll obsess over it, and this keeps your brain focused on it, like a spotlight. The journey from being tortured by your symptoms to acceptance is a very difficult one, but it is more than likely, given time, that you will find peace again.

I hope you're getting good support from your friends and family.

 

[ErikaS]

Hi @ErikaS, I read through your post in disbelief at what you've had to endure. I'm so sorry that life has been so cruel to you. As far as your hearing issues go, it's very common that people start experiencing tinnitus and hyperacusis after prolonged stressful events. It seems the perfect recipe for this storm is heightened stress in combination with dangerously loud sound, and/or an infection, or other such trauma to the ear.

You have to stop fighting against it and accept what you have now as the new norm. From my experience, it is the only way you will get yourself out of this hole. The more you fight it, the more you'll obsess over it, and this keeps your brain focused on it, like a spotlight. The journey from being tortured by your symptoms to acceptance is a very difficult one, but it is more than likely, given time, that you will find peace again.

I hope you're getting good support from your friends and family.

I very much appreciate this advice, and thankfully I have a wonderful support system. Another blessing I am sure to not overlook.

I have to be honest, I very much struggle with "accepting this as the new norm" because this norm I am in right now does not allow me to reach a place to bring a child into the world. My current state would not be fair to myself, the child, or my husband. So I don't think it's wrong to try to have balance of acceptance of the now, but also look to suitable avenues or pray for something like Dr. Shore's device to be released sooner rather than later that could maybe help bring some relief. I also do know time is a big healer, and I very well may improve just giving it more and more time. But I do agree there's such a fine, fine line that leads to fixation/obsession which only highlights it more in the brain. This is why I am trying the DNRS program that @Marin did, to rest my limbic system so I can enter a state of rest and repair rather than exist in a constant fight, flight, or freeze state.

 

[fishbone]

First of all, I'm sorry that you have been through so much. Life can be quite difficult and the roller coaster ride can be unpredictable. From reading your post, I see that you have dealt with lots of stress, and taken some meds in the past few months.

Here is the thing: Tinnitus can come around for any reason. The first thing is stress, this can annoy your tinnitus. This can annoy the nervous system, that has to deal with tinnitus and life in general. Stress can come from many different things, even a bad diet can cause stress.

There are a few ways to help us with better managing stress. @Jazzer is the meditation king, it has been helpful for him. Another way to deal with stress, is to possibly talk to someone and gain support. As I got tinnitus decades ago, I gained support and talked it out.

In general, taking better care of ourselves, can be helpful when dealing with tinnitus. Reducing sugar and salt has been helpful for many (myself included).

Also, do understand this - you are very new to tinnitus. TIME has been helpful for a lot of folks. It takes time to slowly move forward. I put an emphasis on "slowly," because it's a journey. Each day is journey, it's a step. Each day we take a step and move forward. It could be a small step, but it's still a step. In my posts I always say "Keep Moving Forward." It's all about taking those "small steps" each day.

Whether my tinnitus was mild or at the horrible levels it is these days, it's always been a day by day thing. Step by step. Each day it's about taking those small steps. That has never changed...

Do know that this forum supports you 100%.

 

[jjflyman]

I am 8 months post tinnitus onset with multiple tones/sounds and reactivity following within a month of onset. Some of you who follow me or come across some posts may have generally read what was going on in my life before this. I just need to vent my story to those who truly understand my current condition and how it can instantly change a very strong, resilient, mentally sound person into someone who claws their way through depression, anxiety, anger, and fear every day due to their life being flipped upside down and put on hold.

My husband and I hit 3 years of trying to build our family this past June. I inherited a very rare genetic anomaly called balanced translocation that affects the viability of my eggs. Any time I got pregnant, we only stood a 15-20% chance of it making it past heartbeat. We tried naturally, which led to no living child, but a miscarriage through an ectopic pregnancy that required surgery to remove the pregnancy and my left fallopian tube. We then moved to medical interventions. Had no luck with lower level interventions, so them moved to IVF. Within a span of 6 months, I completed 4 egg retrievals. Again, because many of my eggs are negatively affected by my genetic thing, it took a while to create viable embryos that would not miscarry. Out of 4 egg retrievals and a total of 23 embryos, we created 4 viable embryos. Our first viable embryo was created following our 3rd retrieval. This embryo meant the world and more to us. We thought about this embryo for 6 months until we could transfer in February of 2022. Despite everything looking perfect, the embryo did not "stick" and we lost her. Heartbreak, devastation, etc was all we felt for a few months after.

Fast forward to July 2022 and after many tests on myself and hormone therapies, we competed transfer #2. Again, despite a healthy embryo and uterine environment, this embryo did not make it either and we lost him. Following this failed transfer, and before I went back to work in September (speech/language therapist in a school) we decided to do another egg retrieval. Retrieval #5 brought us one more healthy embryo, but unfortunately I suffered a very rare complication during the retrieval which led to my right ovary bleeding internally. Before we knew this was even happening while on our way home from the egg retrieval, I started passing out in the car. I could not make it from the car to my front door without passing out. Ambulance was called, I get to the hospital, my blood pressure is 80/50. Blood transfusions are started, I go into surgery, and despite my doctor doing everything she could for over an hour, I lost my right ovary. They also took my right fallopian tube with my ovary, and because I have no left tube from previous ectopic pregnancy, I can no longer get naturally pregnant at the age of 33. I still have my left ovary which produces eggs, but the gift of falling naturally pregnant has been taken away from me. If I am to ever be pregnant, it has to be through an IVF embryo transfer.

A month after losing my ovary, I had some troubling ear issue stuff going on which was so out of the ordinary for me because I never had ear issues. I developed Eustachian Tube Dysfunction due to a bunch a meds, and I had tried some drops in my ears a few times to help soothe the feelings as I had been dealing with it for over 2 months. As I noticed my Eustachian Tubes were feeling better and opening, I noticed my ears still felt muffled and closed off. On August 26th, I went to an ENT who looked in my ears and said "you have like a pseudo-membrane over your ear drums, have you been using any drops?" I said I did a few times. So she used microsuction in each ear for 5-7 seconds to clear the oil drops that were stuck up against the eardrums. I instantly felt better. I did mention to her that my right ear felt a little full still, and she said "yes, I see some clear fluid behind the ear drum, almost like with allergies, take some allergy med and try Flonase, which should help clear it." I drove home thinking finally, my ear issues are coming to an end.

Two days later, I experience very itchy ears, and what I know now to be hyperacusis. I was at a restaurant with my husband, and his voice felt so loud and all around me was just too much for my ears. I call the doctor to let her know what I was experiencing. She said this can happen, especially because I had that light barrier up against my eardrums, so my ears were acclimating to sound again. Then I said to her "my right ear still feels full too, are you sure I don't need an antibiotic or something to help things calm down?" She assured me things would calm down on their own.

Within a couple of days the hyperacusis did completely calm down, I wasn't bothered by noises at all and was going about life normally, but my right ear felt fuller and fuller. A week later, with a very full feeling in right ear, my tinnitus makes its debut in the right ear. I go to a local clinic who tells me my right ear drum is bulging with so much infected fluid behind it. I get on Augmentin, the infection clears after 6-7 days, but the tinnitus stays. I make my way back to that ENT who checked my ears and hearing, stating all looked fine, and she suspected that "little high ring" to go away. About a month later after another virus or two, I am about 3-4 sounds deep bilaterally with reactivity or spiking tinnitus to sound, to the point I have to take a leave from my job and completely stop my life as I know it.

I now sit here, 8 months later, still in complete disbelief of the wrong side of rarities I have endured over the past 3 years. Quite a few very rare things have happened to me that led me to this spot, when all I was trying to do was become a mother. I'm a hard worker, a fun aunt, a caring daughter, a loyal and loving wife, and even when life threw punches, I'd have a cry or scream about it then I'd say to my husband "let's go grab some margaritas, let's go see some friends, or, let's watch some of our shows" and I'd carry on and be grateful for the life I had and my overall health that allowed me to do the things I was doing.

This condition has not only stopped life and our journey of becoming parents, but it has broken me. It has altered my mental state in ways I've never before experienced, even through all the loss and trauma with infertility situations. Ive thought scary things I never thought I would, and I've cried in utter fear and despair so many times. I've tried many things to try to help me improve just so I could function enough, but can't say I can report any improvements. As I fight this war, the world around me continues to move along. Couples getting pregnant, people living their lives normally, everyone getting excited for summer, and I am just stuck in a snow globe watching it all happen. Oh, and Mother's Day is in a week. It's just one dagger after another and I am mentally, emotionally, and physically exhausted of it all.

If you read all of this, I truly appreciate you listening to my vent story. Things have only gotten harder recently, so I thought maybe if I turn to writing and sharing with those who understand my current state, it would be therapeutic. I'm not giving up, I have my frozen embryos to fight for and a life I love way too much to leave, but it doesn't change how utterly exhausted I am of this awful condition and how it hasn't turned a corner with reactivity and spiking, leaving me debilitated and a shell of who I used to be.

Your story is truly heartbreaking, and I am so sorry you are going through this. Nobody deserves to have to endure tinnitus.

I know it seems hopeless, but there is still hope. I have battled with tinnitus on three occasions in the last 15 years or so, all from acoustic trauma. The first two faded to zero or near zero after 12 to 24 months, the third has been 2 months and has faded 80%.

There are members here who have suffered with tinnitus for years, sometimes decades, and that is horrible, but there are many times that number whose tinnitus fades over time, and they get back to a normal life, with tinnitus either gone or so mild it no longer bothers them.

Eight months seems like a long time, but your tinnitus is still relatively new, and there is no reason to think it will never improve. Will it fade to zero? Maybe, but I believe it will improve over time. It may take many more months, or even a few years, but I truly believe it will get much better than it is now.

 

[Samwise_The_Loud]

It was said by Seneca that "Sometimes even to live is an act of courage". I believe this quote applies here more than ever, just hang in there day by day and await the dawn. It will rise eventually, and only when the night is darkest.

We're all with you.

Wishing you all well,
Sam

 

[Stuart-T]

I am sorry to read about all the traumatic issues you have faced.

One thing that stands out for me is the microsuction you had. I have never heard of ear drops sticking to the eardrum and needing to be removed by microsuction which is typically used to remove wax. I had wax removed and some was sticking to my eardrum - the clinician would not risk puncturing my eardrum so he stopped with the microsuction and advised me to use olive oil to soften the remainder.

Still - as you say, you had an improvement - I guess that it worked out ok. I am just surprised that ear drops remained on the eardrum.

 

[ErikaS]

It was said by Seneca that "Sometimes even to live is an act of courage". I believe this quote applies here more than ever, just hang in there day by day and await the dawn. It will rise eventually, and only when the night is darkest.

We're all with you.

Wishing you all well,
Sam

If only you knew how much of a LOTR fan I am, which makes your very caring reply even better Thank you so much, Sam. Light will prevail over darkness.

 

[Samwise_The_Loud]

If only you knew how much of a LOTR fan I am, which makes your very caring reply even better Thank you so much, Sam. Light will prevail over darkness.

Us diehard LOTR fans need to stick together! Even through the most difficult and testing of circumstances which you are currently enduring with grace and dignity, and for the resolution of which I will pray for.

One of my favourite LOTR quotes to keep back the tides of darkness is:

"It is not despair, for despair is only for those who see the end beyond all doubt. We do not."

So I do not despair for you, as there is always hope!

Do let us know how you are doing as time progresses.

Wishing you all well,
Sam

 

[SamRosemary]

Thank you for sharing. The raw and real vulnerability makes me feel not alone in my own struggles with tinnitus.

I'm really sorry about all you've had to endure. A series of unfortunate events. I really feel you on the mental exhaustion. This really is the fight of our life. I have never experienced anything like it. I'm glad you're fighting and not giving up. You will win this battle. I try to focus on all I do have to live and fight for. That's what we need to hold onto. Can't let this monster win.

 

[Stayinghopeful]

You're so much stronger than you know @ErikaS and we here on this forum are all hoping you have a speedy recovery. Things won't be this hard forever. Seasons come and go and soon you'll be in a much better place.