Fiancée Is Desperate: Tinnitus Caused — and Made Worse — by Propranolol, Looking for Guidance!

I have yet to see you answer this question, but have you asked her how loud her tinnitus is?

Can she hear it in the shower? In the car? With the TV on? With music playing in the background? In a quiet room?

Tinnitus can be hard for people at any loudness, but it is still unclear whether this is a tinnitus problem or a mental health problem. I understand they both can go hand in hand and overlap, I just want to see if we can narrow it down. Some people can't habituate over time and it remains a problem or it takes a longer time to habituate. Is the tinnitus making her mental state worse or is her mental state making the tinnitus worse? Did she have mental health issues prior to tinnitus?

 

I am so sorry to hear that the two of you are going through this. Tinnitus is a terrible condition for both the person suffering and those closest to them. Try helping her our by playing rain or other masking noises at a low level in the background of the room. Try taking her for a walk. Tinnitus leads to a vicious cycle (something I and many of us have experienced or continue to experience). It is important to try to break that cycle and not to listen into the tinnitus the entire time as it will pull you down.

Try masking during the day and before bed. Try going for walks or a hike. Make sure to stay hydrated and to eat healthy.

 

Wow, leave your partner when they are at rock bottom with a debilitating condition?

What shocking advice and high 5 for throwing a fellow tinnitus sufferer to the dogs.

 

I, too, am sorry to hear about your fiancée's difficulties at the moment and sincerely hope that she (and you) can find a way through this.

I empathise with her wholeheartedly, as so many others on this forum will. When my tinnitus became intrusive, and I was faced with the realisation that this was to be a long-lived battle, I broke down and my nervous system went wild. I was so consumed with anxiety that I could barely sleep - which effectively meant the end of my life (as I already had chronic fatigue syndrome and struggled with daily life). The anxiety soared through me and I felt like I was losing my mind, as well as control of my body. I I was suicidal and was anticipating the end.

My wife, in her desperation, had me checked into a psychiatric hospital. Though I am English (from London), I am living in France. I have never stayed at a psychiatric clinic, and to do so in a foreign country was one of the scariest things I have ever done. To cut to the chase, I was put on a high dose of Valium, 3 times per day - maybe 40 mg (I know some people go up to 50 mg per day). It turned out that, despite my fears of taking any medication that could make it worse, it almost completely settled the tinnitus. I used the time to relax, speak to others who were in the hospital with various issues, and regroup and to think about ways to help myself.

The psychiatrist told me that I had to break the vicious circle - and it sounds to me like your fiancée has to do the same thing. You might encourage her by reminding her that her sleep is better for the moment - which is absolutely key to fighting this. If she could, as others on here have suggested, try one or two things to take her attention away from the noise, like watching some TV, playing some masking sounds in the background, or doing one or two bits around the house, in addition to, perhaps going out for a walk with you, she might further progress in reducing the amount of time and space that the tinnitus takes up. If you can, I would stress that there is no hurry, that she will do things in her own time, when she is ready - anything to relieve any external pressure is always welcomed.

I feel for you both. You are suffering too and it is great that you are hanging in there for her. We appreciate your efforts.

Finally, as has been mentioned, perhaps invite her to view this thread and to see that she is not alone - we will help to shoulder the burden and to provide what comfort and reassurance that we can.

All the best.

 

Hey,

Oh my goodness, I am so very sorry to read this thread.

I first acquired tinnitus in January 2020 but I have been incredibly lucky and it seems to have diminished a lot and to be honest I’m not even sure it is there anymore but because it caused great stress and anxiety I feel like my brain is often looking for it. Strange!

I just wanted to jump on this thread to offer my deepest sympathy. I am very sorry to hear that your fiancée and yourself are going through this dreadful time. Please please tell her to have hope though. I understand that this sounds very cliché but I held on to hope and now I am doing a million times better and getting on with life! My tinnitus came on because I was/am going through great stress in my life. Like you, I suffered a miscarriage and we have now found out that my husband has Crohn’s disease and therefore very low motility thus meaning we will have to undergo fertility treatment. Since I have taken time for myself, come off social media and kept myself busy I am in a better place all in all.

I have no clue why the man has said to give up on your fiancée because to be frank, it is totally absurd. I was a total basket case for around 3 months and not working... no sleep and crying! If my husband would have left me I am not sure how I would have coped. Please stick by her and help her through this; maybe she needs to be taken care of in a rehab centre for a little while and to give yourself some respite? If she would like to talk then please do message me and I can give you my number. Sending love x

 

I think the best thing you can do is just be there. Don’t try and force her to do anything or suggest anything anymore because that route obviously isn’t working.

I think you’re just going to have to let her ride this one out. She will tire of looking for answers at some point. We were all like that at the beginning. Just some carry on searching longer than others. BUT we all stop eventually. And that doesn’t mean we’ve given up looking into new research etc. - it just means we’re no longer frantically searching google for hours in answer for a miracle cure.

A time will come when it will stop. As long as she isn’t causing herself any harm; and it gives her some kind of relief/distraction by looking for answers, then let her continue.

The only thing I might be able to suggest, is getting her to meet someone else with tinnitus. Someone who can level with her. Someone who truly knows what it is like. (Unless you’ve already tried that of course).

Have you shown her our messages to you on here? Would she respond well with knowing there’s a whole community online who understand and want more than anything for her to be better?

If it would help, I’m sure as a support group we could write a personal message for her, to let her know that she is not alone.

I sincerely hope you guys make it through this.

All the Best,
Steph
<3

 

As people have suggested, the best support now would be getting in close contact (chatting, calling) with other tinnitus survivors, perhaps better those who have already passed the crisis stage and can share personal experiences that things should get better, supporting on a daily basis.

It's shocking to even think that someone would abandon a person in such state. This is literally a life threatening situation and the personal support is vital.

 

The kindness, compassion and empathy you took the time to express really touched me. Very good advice shared as well...

 

I can completely sympathise with your partner, I have been driven insane by my tinnitus the last 8 weeks and can't mask it due to it being reactive. I have very little hope for the future. Maybe me and your partner should be locked in a room together to just cry it out. It is incredible what tinnitus can do to the quality of life. I just want to be in bed all the time. I sometimes think of cutting my auditory nerves but I hear even people who do that still hear tinnitus as it is in the brain. Cruel, cruel, cruel.

 

No don’t cut your auditory nerves... I know it’s hard but please hang on a little longer.

 

Yes, unless you are one of the few people whose brain never unlearned to hear the sound produced by the cilia in your ear when they were a child / baby, tinnitus is unrelated to a person's hearing. My audiologist told me about a case where a person insisted on having their auditory nerves severed and ended up with nothing but the sound of their tinnitus and eventually committed suicide because they couldn't live with the result of the step they had taken.

I've got reactive tinnitus myself but there are only certain noises / frequencies my tinnitus reacts to. They are never really the same which makes finding masking sound other than the sound produced by my WNG, that can be grating at times, challenging, because what works one day might be hell on another.

I wish I had more to offer than please don't do anything rash...

 

Thank you for all your responses.

Her tinnitus is fairly loud with multiple tones in both ears.

It was looking, until this week, like the 45 mg Mirtazapine had started to reduce her anxiety, her mood was becoming better and she was getting out the house, walking our dog and genuinely getting on with life a little more than the previous months.

However, this last week she has gained:

1) Reactive tinnitus (taps, cars, dishwasher etc. setting off a siren sound in her ear) in her right ear.

2) Incredibly uncomfortable pressure in her left ear. (Multiple ENTs have ruled out ETD from various tests but she doesn't believe them.)

Both of these have again affected her quality of life and have taken her multiple steps backwards. Her anxiety and negative thoughts are back and through the roof. She cannot get through the day without breaking down for the majority of the day.

It feels like we are at a dead end with everything.

For months now I have tried to motivate her to try all the things we have heard from these forums, ENT, audiologists and the internet but she doesn't seem to want to try anything.

These involve:

• Exercise (walking our dog/running)
• Cleaning up the diet
• Reducing salt/sugar intake
• Masking sounds with bone conducting headphones, radio in the house, diffuser, fan
• Meditation
• Breathing exercises
• Yoga

But for whatever reason she doesn't want to try them, even though she is crying out for help.

Has anyone gained any positive effects from implementing any of these actions?

Thank you again for your responses, I am reading and so appreciative of them all!

 

@DesperatePartner, I have read stories in this forum of people that failed at all strategies but still were OK in the end.

One of my most effective strategies was staying away from forums. In my early stage I was reading a lot. But only after I stayed away from forums for a while I started to slowly lose the attention to my tinnitus. This was an advice from other forum users who after a while came back to the forum to help others.

 

Hi there. So sorry to hear you are both having a tough time. I’m sure others here will have keener insights, but here is my 2c for what it’s worth.

Many people on here take Magnesium supplements to promote nerve healing. It’s basic, but worth a shot if she’s not taking them currently. I did notice a drop in volume after taking supplements, but it may have gotten lower naturally... it can be difficult to correlate cause with effect.

Exercise is good. I’m in two minds about going on too strict of a diet. Whilst I am for eating healthily I do think there is a danger of not eating some foods you enjoy and thinking ‘just another shit thing tinnitus has kicked into my life’. My current philosophy is - I like coffee, so I’ll be having it first thing in the morning... and a bit of chocolate or ice cream every now and then too. My ears do kick off in volume after a store bought coffee, but they always come back to baseline again.

Masking can be helpful, but I suspect some testing will be needed to find something that works. I would not use headphones and prefer to use an external speaker. Having reactive tinnitus complicates things. Certain sounds (and particular songs) for me are quite annoying. This is where some testing comes in. Most bands still sound good to me. Other songs are more reactive and distorted. Jamming by Bob Marley has this weird click track, almost like musical ear, over the top of it. In short, I’ve had to test a bit, but I think I’ve got a playlist that works for me.

Another crucially important thing is to keep a good routine and keep busy. Objects in motion tend to stay in motion. Getting up at the same time every morning, getting showered, groomed, well fed... then getting busy. My most difficult times are when I’m just sitting alone with nothing to do except listen to the ‘shhh eeee wawawa’. It doesn’t even have to be a job - perhaps volunteering, getting buried in a hobby, playing video games, anything that’s engaging concentration. Sitting and doing nothing is a trap in my opinion.

Best of luck.

 

Totally agree with this. The more I stay busy, the less I notice the tinnitus and even at times don't notice it at all. I do use the masking to help out as well. TV is on 24x7 and when not in the house, I always have the radio on, it does help greatly.

 

I don't remember seeing anything about your fiancée's neck, back, or jaw muscles being addressed.

Have her try the exercises here 3 times a day for a month.

10 Best Cervical Herniated Disc Exercises...

It's a long shot but there might be nerves in her cervical spine or muscles that is causing tinnitus, and healing this will take some time.

 

Exercise and masking help a lot. I’d sit with her and go through different sounds to see if something will soothe it for her. I really like the Calm app for this. I would also print out some success stories from Tinnitus Talk for her to read. A few maybe where the sound went completely away or down after a year or two but I think the more important stories are the ones where people have stated they have learned to live with it. Also, think about taking her on a vacation somewhere nice and exciting if possible. She needs new experiences and to make new happy memories even if it is just one hour out of the whole vacation she finds joy in.

Also if she is having ear pressure and sound distortions, it could be TMJ related? Does she have any pain/pressure that travels down her jaw next to her ears? You might also see a rheumatologist to see if her issue has anything to do with an autoimmune condition. Even if just to rule it out.

 

I can tell by your posts that you just do not get it. I suppose how could you though. Before I was cursed with this hell, I could not have imagined the suffering it causes.

The reason 'she doesn't want to try anything even though she is crying out for help' as you say, is because she is debilitated. Completely and utterly debilitated. I wouldn't expect you to understand that given this isn't your lived experience. Noise torture is used in warfare and it works... and we suffer it 27/7 without a minutes break yet we are meant to just cope, and when we can't, we are apparently just not trying hard enough. I cannot emphasise the word torture enough, because that is what this is for those of us with severe tinnitus. I have lived day to day since this began for me 8 months ago... most days hour to hour. Every minute must be managed so that I don't fall into the depths of despair. I imagine your fiance and I are in a similar place because when I read your posts, you could be talking about me.

I will tell you that I have tried everything on your list and more (much more), and not one thing has made even the smallest amount of difference to my tinnitus.

I feel for your fiance. I would swap tinnitus for almost any other health condition imaginable. The fact that severe tinnitus isn't terminal is cruel.

P.S. I would do some reading up on those higher doses of Mirtazapine. I have read about it making many people worse.

 

Mirtazapine didn't work for me even for sleep. It's quite a nasty drug (aren't they all) to come off - I've been tapering down for months now. Shrinks think that upping the dose to 45 mg will magically make us happy and forget about tinnitus. It's a complex solution that's needed for severe sufferers. Lots of therapy, lifestyle overhaul, dieting etc. I regret actually reaching out to a shrink (my family advised me though as I was suicidal), they can only prescribe big pharma poison. I had more success with traditional medicine and herbalism + psychological support from fellow sufferers.

 

You want to help her and it's tough because you're offering advice you've heard from the 'experts'. The problem is the 'experts' don't have real solutions so it causes more stress for everyone. It's crucial not to become upset with her about this. If anything, be upset with the 'experts'.

It's extremely important to understand that although it may take a while and although the tinnitus may not go away it will get better. I know this sounds impossible and unfathomable when she's in the state of mind she is in but it's absolutely true even if she doesn't believe it right now. I'm living proof. I went through this experience once already and I'm right around now (10 years later) getting through it again a 2nd time.

For the drugs, 45 mg Mirtazapine obviously isn't working. Try something else with the understanding that it's only for this rough spot and it will get better. If she doesn't have a problem taking Mirtazapine then what's the big deal with taking a little bit of Xanax or Clonazepam with the understanding it's only a temporary thing to get through this rough patch?

 

Has your fiancee seen the amount of support pouring in from the members of this forum? She's not alone in her struggle, and she should take comfort in knowing all of us here understand what she is going through. I don't mean to speak for everyone else here, but I believe we have all gone through the same grief and terror she is experiencing. She needs time to mourn the loss of her peace. How much time? Only time will tell, honestly. It could be years. I know it hurts to be her punching bag, and I don't think anyone expects you to take on that role forever. The fact that you are present in her life, while she is struggling with this is more important than you could possibly ever imagine. You are a saint. I applaud you for having the strength to stick around and be there for her in this. I'm honestly both jealous and overjoyed she has a partner such as yourself.

I can only give my own anecdotal advice on coping with tinnitus. Nortriptyline saved my life. I was going to end it, but now I feel strong enough to take this on and gain back my life. I only take the lowest dose possible, 10 mg a day, as I have heard it has worsened a few people's tinnitus. I tried a higher dose myself but felt it made my tinnitus a bit louder. It went back down after a few days of reducing the amount I was taking.

A few of us have been discussing psychedelics such as Psilocybin and also Ketamine infusion. Results on these are mixed, but it's something you could look into. I have been particularly interested in Ketamine infusion, but have been trying some other things first.

 

Hi Cruise,

I have gotten a lot of comfort from your posts as I am sure the original poster did as well.

I am curious. Can you please describe your tinnitus? Mine is very high pitched. I cannot mask it at all or distract myself. It fluctuates, gets terribly loud, then quiets down a little. It is mostly worse in my right ear but today it is my left that is bothering me. Based on my recent hearing exams it does not look like I have high frequency hearing loss. Doctors think this might be TMJ related.

I will never get used to this anxiety am not sure my brain can either. It is so intrusive.

Best,

Danielle

 

I truly understand Alias because I too would gladly swap this hideous unacceptable debilitating nightmare with any other health condition. I see a lot of people walking around enjoying music with earbuds wishing I had healthy ears like them. I see really obese people bigger than me and how they don’t develop severe disabling tinnitus I have no idea. I need to lose weight but worry about it not having effect on my reactive tinnitus. The only thing I do is distract myself but I can’t always distract myself with games and adult coloring books and art because I have to work and run errands and I’m aware of the damn thing every single second. I hear it every single second when I’m out and about

 

I feel for your fiancé because I’m in the same boat with the reactive tinnitus thing. I know the agony she feels. I wish I had some advice.

 

My tinnitus is very high pitched, not easily maskable, mostly on my right side but when I get spikes I get multiple tones from both sides. My tinnitus is very loud when I focus on it or give it too much attention. When I don’t pay attention, it fades into the background. My tinnitus used to cause a lot of anxiety in the early stages but nowadays does not cause any anxiety.

 

Hi there. Sorry to hear you both struggle so hard with this.

I advise you not to push her too much because for many there isn’t a quick fix. But your ideas are reasonable and should give her a better mood. Is there a place nearby you can drive to and go for a walk in nature with running water and leaves rustling in the wind...?

That’s my only comfort in addition to this forum.

Have you looked into physiotherapy?

Some of them are known for helping tinnitus that has stress induced components. I even heard someone claiming it helped his noise induced tinnitus a lot. But take that with grain of salt.

Best regards.

 

Thank you. Do you have hearing loss?

I’m just so over this. I’m trying really hard to ignore it but is really getting in the way of my ability to work.

I first got tinnitus in 2015 but it wasn’t the same as this. It was more from my head, bilateral, post loud concert. Resolved in two years. I was tinnitus free for three years.

Early 2020, I ended up with an echo in my left ear and very mild hearing loss. I adjusted to that and then woke up early this year with pure tone ringing in the left ear and more hearing loss. Still mild. The tinnitus and hearing loss resolved appreciably after a stint on prednisone.

This fluctuating high-pitched tinnitus started in 2020 after I first experienced my hearing loss in my left ear. But it wasn’t as bad as this is or as persistent but fluctuated constantly. It went away by fall, but came back again a month after I had more hearing loss in my left ear. I do find all of that strange and coincidental. It would come and go but it has now been unrelenting for two weeks. Funny my hearing is fine in my right ear, yet the tinnitus in that ear is the loudest. I have decided to have another hearing test which will be like my fourth one this year on Thursday.

It is driving me absolutely insane. I don’t know how you ignore this.

 

I'm so terribly sorry. You don't deserve this. You seem to be having a horrible time. I'm also struggling immensely at the moment. The way you describe your tinnitus it sounds a lot like mine, although mine is bilateral in the left ear. It worsened significantly on the 16th of June.

I wish I could give you a hug.

 

Thank you. It sucks for the both of us. No one deserves this. And I take care of my ears. I was just telling somebody I feel like I’m on a hamster wheel with tinnitus. Gets better, it gets worse, it goes away, it comes back.

Right now I have a low level jet engine going in my ear.

 

I agree.

When you've just developed tinnitus, your active compulsion is to spend all your time researching it, spending time on forums reading about it and frequently monitoring its volume.

One of the biggest leaps in progress for me was undoubtedly in spending less time on support forums and just focusing on my day-to-day life.