Pregnant & Scared with Reactive Tinnitus — Your Help Requested

[Meinz89]

Hello,

It would mean so much if someone could take a moment to read my story.

I'm 24 weeks pregnant with my first baby at 36 years old, and what should be the happiest time of my life has been consumed by sudden unilateral tinnitus that began on April 13. Almost four months later, I still do not have a clear cause, and no doctor can tell me whether it is "just pregnancy." I have explored every possible explanation and undergone numerous blood tests, an MRI, and several medical exams.

I started sound therapy with Treble Health in June, hoping to habituate before November. At first, my tinnitus was quiet in the mornings and only reacted to specific sounds like fans or air conditioning. But over the past few weeks, it has escalated. Now it flares up loudly even in silence, has become multi-tonal, and changes by the hour. Some days are manageable, but most feel unbearable.

I can hardly eat because I am so depressed. I'm also considered a high-risk pregnancy due to a slight heart defect, my age, and now this.

We moved to Indiana in January, and my husband is my only local support. I'm scared of how I'll cope when my baby arrives, especially if the reactivity stays this intense. I feel lonely, lost, and unsure whether to focus on constant ear protection, sound therapy, or gentle sound exposure.

If anyone here has improved from very reactive tinnitus, please share your story, advice, or words of encouragement. I desperately need to believe there is a way forward.

I want to live life again. I want to smile again. I want to be a good mom. Please, someone give me hope that I can still have a good life someday.

Meg

 

[MindOverMatter]

Hello @Meinz89,

I am sorry to hear about your struggles, especially since you are pregnant, which already takes a toll on you.

Unfortunately, there is no set timeline for this. Healing cannot be rushed, and the more you stress about it, the longer it will stick around and the more intense it can become. That is what makes this journey so complicated.

If you read some of my posts on this forum (you can find them through the search function), you will see that I had very reactive tinnitus for a long time. Even today, five to six years after the incident that triggered it, flare-ups still happen. However, when they do, they are less intense, and I have less of an emotional reaction to them. This is partly due to acceptance and habituation, and partly because of lowered stress levels.

So, what should you do? There is no universal blueprint for this condition. In my opinion, reactive tinnitus is a subset of hyperacusis. Constant overprotection will likely lead to an even more sensitive auditory and nervous system. You need some sound input.

The trick is to find something you can tolerate, or at least tolerate better. Something that does not aggravate your reactivity. Just audible is enough, preferably through high-quality speakers. Experiment with this, and use it as background noise when possible.

If you can, spend time in nature. Ground yourself and shift your focus. Even if your ears react to rustling trees, running water, or other natural sounds (I experienced all of that, but it did not stop me), nature is good for your nervous system and can help improve your vagal tone. It will also support your ability to manage your stress response.

A major part of this is that your nervous and auditory systems are on constant alert, in fear mode, and in fight-or-flight. That circle of fear needs to be interrupted.

Perhaps your symptoms started as a result of pregnancy, or maybe you went through a lot of stress at some point. No matter what triggered it, there is a strong chance that you will get better with time.

You will love your life fully again, you will smile, and I am sure you will be a great, caring mum.

Things will get better, but you need to give it time.

 

[Meinz89]

It truly means a lot to me that you took the time to read and respond to my long post during such a difficult moment for me.

I agree there is probably no exact playbook for managing reactive tinnitus, and I know I do not want to spend my life in earplugs. My morning and evening walks have always been so therapeutic, even before tinnitus. Unfortunately, we are in the middle of cicada season here, and they are so loud that I often wear Loop Engage plugs just to get through a walk. Some days, I try to be brave and take in all the normal sounds of daily life, but I often end up paying for it later. I think I will follow your advice and reintroduce sound slowly and gently, a little more each day.

My doctors have suggested SSRIs and other antidepressants, but I am not ready to go down that path, especially knowing that some medications can worsen tinnitus. I am hopeful I can find a way to calm my nervous system naturally, so my brain can break free from this constant fear and worry, fight or flight loop. Unfortunately, the first ENT I saw told me the dreaded words: "There is no cure for tinnitus. You will just have to learn to live with it." That still haunts me.

I am truly grateful you reached out, as it makes me feel less alone. Your response gives me hope that, even if this stays with me, I can still find a way to get my life back.

 

[MindOverMatter]

My doctors have suggested SSRIs and other antidepressants, but I am not ready to go down that path, especially knowing that some medications can worsen tinnitus.

I get you. I never opted for those myself, even at my lowest, when I was in a really dark place.

"There is no cure, and you will have to learn to live with it" is a common saying among ENTs, unfortunately, and not a good way to meet people in despair. I completely agree. There is a lot that can be done, and there is a lot of hope.

Funny you mentioned those cicadas. We do not have them in Norway, but I recently spent ten days in Italy. They were loud there, but 90 percent of the time they were not bothersome to me. At times they were actually soothing. If you had asked me about this four years ago, my answer would have been totally different, so I know exactly how you feel.

You will find your way forward. Stay positive and have faith in better days, and by all means, stay away from negative counseling, negative stories, and too much Googling. It is pure fuel for the nervous system in a harmful way.

Feel free to reach out anytime.

 

[Rainer]

Meg,

Tinnitus during pregnancy affects one in three women. One could say it is par for the course, and in the overwhelming majority of cases it goes away on its own after the pregnancy is over. The technical term for "goes away on its own" is "spontaneous remission," which might be useful if you want to find scientific papers on the topic.

Speaking of spontaneous remissions, this is very common with tinnitus. This should lead to a re-evaluation of the success rate claimed by Treble Health. The proper thing for them to do would be to compare their success rate to the rate of spontaneous remissions. They probably know why they will not report such statistics.

One must also consider the possibility that "sound therapy" can make things worse and could reduce the chances of a spontaneous recovery. I completely understand the panic and the intense desire to just do something to make it all go away, but I also believe I made my own situation worse by trying to heal myself with this. My ears needed rest, first and foremost.

Lastly, and probably most importantly, I believe you should think long and hard about whether you should leave Indiana for the duration of your pregnancy. Thanks to the badly written abortion ban, healthcare for pregnant women is severely limited where you live, and you mentioned that you have a high-risk pregnancy. The maternal mortality rate in Indiana is one of the highest in the United States, and five times higher than in my own country. According to a paper from Indiana University (link to PDF), 77 percent of these deaths would have been preventable.

Take care.

 

[Jupiterman]

One must also consider the possibility that "sound therapy" can make things worse and could reduce the chances of a spontaneous recovery. I completely understand the panic and the intense desire to just do something to make it all go away, but I also believe I made my own situation worse by trying to heal myself with this. My ears needed rest, first and foremost.

The above is the most crucial paragraph of this entire thread.

 

[MindOverMatter]

The above is the most crucial paragraph of this entire thread.

You clearly do not know what sound therapy is about. But yes, I agree with @Rainer because he says it CAN make things worse, and it sure can. Traditional in-ear sound therapy should not be tried unless it is professionally guided and you can tolerate it.

However, the auditory system needs something to work with in order to hopefully desensitize and stabilize over time, both with many types of hyperacusis and with reactive tinnitus. One size never fits all though, and this is trial and error.

For me, natural sounds were the best way forward, as I could not stand artificial soundscapes at one point.

The most crucial thing with anything related to tinnitus, especially when people are in despair, is not to spread negativity. Negative counseling is fuel for a nervous system that is already out of control.

 

[BuzzyBee]

Meg, I'm so sorry to hear what you're going through. I'm almost 10 years in, and it's been really hard. Hopefully, Susan Shore's device or some sort of pharmaceutical intervention aimed at tinnitus will help, but for now, all we can do is take advantage of anything that makes life more bearable. If your doctors believe an SSRI could help you and that it would be safe, you might consider it. They make some people's tinnitus worse, but they also help others, so it's a tough call.

One interesting thing, and maybe this is a silver lining, is that there's a new postpartum depression drug called Zulresso, also known as Brexanolone. You'll most likely be able to get it if you experience depression after the baby arrives. Here's the thing: Zulresso seems to lower tinnitus. So if you take it for PPD, chances are it will reduce your tinnitus and those early years with your baby could be the happy years you deserve.