Tinnitus of Unknown Cause Has Flipped My Life Upside Down

[Jonnie]

Hello everyone, nice to meet you.

You can call me Jonnie - I'm Canadian digital nomad in my mid-30s who spends time in Toronto and Vancouver. My tinnitus started a few weeks ago, and has flipped my life upside down. I'm a light sleeper and tinnitus has taken away my ability to use earplugs and ultimately my restful sleep. Furthermore, I had to cancel a few high profile interviews I had spent months preparing for. This has caused various negative emotions & feelings to manifest, and has made me wonder what this means for my life and career.

The origin of my tinnitus is unknown, but I do have theories and I have had some interesting journeys recently:

- I moved to a new apartment a couple months ago, and it was situated in a very loud area. The washroom fan (connected to the lights) sounded like a jet engine and flushing the toilet would make it squeal. This could have been prolonged exposure to this environment.

- A few days before the tinnitus started, I stopped by an outdoor EDM party for 30 minutes to say hi to some friends. I didn't experience any tinnitus immediately after leaving the event.

- I infrequently use Psilocybin for mental health (1-2 times a year), but a couple months ago I got an opportunity to try 2 very powerful psychedelics. It seemed to have given me minor HPPD (including light sensitivity and starbursts), but the tinnitus didn't manifest until 1+ month later. We know psychedelics can cause neurogenesis and affect neuroplasticity.

- Some of the supporting people around me believe it's a stress response.

Because this is so new to me, this is an ongoing battle and learning experience. I miss restful sleep and being able to nap.

I will be doing a high frequency hearing test next week with an audiologist, and I'm waiting for my ENT referral to go through.

I'm excited to be a part of this community to learn, receive support, but also provide support for others.

Cheers!

 

[Stuart-T]

Welcome Jonnie - I am sure you will get some benefit from this board. Not knowing the cause is frustrating. What you said about your fan squealing made me think of something for my own case which I assumed was either caused by COVID-19 or ear wax. In my apartment which I have now moved away from - I had a very sensitive smoke alarm - now and then when cooking - it would go off - making very high pitching noises. It could take several minutes of this before I cleared the air and stopped it. I was living in an over 55s block and I wonder if they pitched it like this for older people who are hard of hearing. It may well be the cause of my tinnitus and in your case I would not rule it out with the fan. If you still have that fan - make sure you do something about it.

 

[Jonnie]

Welcome Jonnie - I am sure you will get some benefit from this board. Not knowing the cause is frustrating. What you said about your fan squealing made me think of something for my own case which I assumed was either caused by COVID-19 or ear wax. In my apartment which I have now moved away from - I had a very sensitive smoke alarm - now and then when cooking - it would go off - making very high pitching noises. It could take several minutes of this before I cleared the air and stopped it. I was living in an over 55s block and I wonder if they pitched it like this for older people who are hard of hearing. It may well be the cause of my tinnitus and in your case I would not rule it out with the fan. If you still have that fan - make sure you do something about it.

Thank you for taking the time to respond and the support Stuart

I was subletting for a couple months, and I have since moved when my contract was up. (The building was also one of those old rental buildings, where the building manager had limited resources to fix problems.) Unfortunately, if the fan was related, it seems the damage has been done.

When I first went to the doctor, I asked him to clean my ear, but after taking a look, he assured me my ears were actually really clean with no ear wax.

Your former living situation also sounds terrible. I haven't been diagnosed with hyperacusis yet (still waiting for an ENT), but I do feel more sensitive to noises recently. So I understanding how triggering a lot of common noises can be.

Did you have COVID-19 symptoms when you got your tinnitus?

 

[CharleyH]

Today my tinnitus has taken a break. I did not get an adequate amount of sleep but I did manage to not compress neck muscles in my sleep which is part of the cause I attribute tinnitus to along with exposure to loud noise. It's days like this when I experiment a bit to find which bad posture triggers tinnitus. Bending the head back definitely is a trigger.

 

[blamingeverything]

Hey Jonnie, welcome to our unfortunate club. It sounds like you're handling things ok, all things considered? Up front I will say that the fastest you can get back to living your life, the better off you will be (hearing protection considerations etc., but without overdoing it) and distracted from the noise. I think I was held back earlier this year because I'm working from home and was scared to death of getting COVID-19 and that making tinnitus worse. (I got COVID-19 last month and it didn't affect my tinnitus at all). Isolation doesn't help anyone with anything except like, infection prevention.

Prepare for a lot of change, and change is normal.

I can relate to your sleep issues. Before tinnitus I slept with earplugs for about a decade, and have been a terrible sleeper for as long as I can remember. The slightest stressor will ruin my night. Now, earplugs don't affect my tinnitus at all and now that I'm more comfortable with the tinnitus itself, I can use them without a problem. I did get used to not wearing earplugs but it took time, the right white noise track, and Trazodone. I still use Trazodone nightly and sleep as well as I ever have at this point (that is to say, still not great but a lot better).

I wish I'd found tinnitus podcasts sooner. The Tinnitus Talk Podcast, ATA's Conversations in Tinnitus Podcast, and Outring Tinnitus Podcast (I really like Frieder, he also wears earplugs to sleep btw). They really help you to get your head around the issue with evidence and practicality, as well as normalize the condition. i.e. plenty of otherwise normal and successful people have it and live their lives in spite of it.

The Oto app helped as well in early days.

A few therapeutics I've found helpful:

• Klonopin sparingly i.e. once weekly - a little more in early days. for me it was a lifesaver.
• Low dose marijuana edible I've recently found quiets my noise materially, doesn't take effect until the next day.
• As does Doxylamine succinate - once in a while I take half a 25 mg tab, the next day is much quieter.

 

[Stuart-T]

Thank you for taking the time to respond and the support Stuart

I was subletting for a couple months, and I have since moved when my contract was up. (The building was also one of those old rental buildings, where the building manager had limited resources to fix problems.) Unfortunately, if the fan was related, it seems the damage has been done.

When I first went to the doctor, I asked him to clean my ear, but after taking a look, he assured me my ears were actually really clean with no ear wax.

Your former living situation also sounds terrible. I haven't been diagnosed with hyperacusis yet (still waiting for an ENT), but I do feel more sensitive to noises recently. So I understanding how triggering a lot of common noises can be.

Did you have COVID-19 symptoms when you got your tinnitus?

My left ear started ringing 1 month after I recovered from a mild bout of COVID-19. I also had a strong head cold 2 weeks before the ringing started. But I also had a left ear badly plugged with wax and it took some time to get it out. The tinnitus level reduced after the wax came out but is still significant enough for me to join this board and search for treatments. The smoke alarm did sound very piercing and I was desperately trying to clear smoke from my kitchen to stop it rather than plugging my ears. I honestly don't know why I have tinnitus.

 

[Jonnie]

Hey Jonnie, welcome to our unfortunate club. It sounds like you're handling things ok, all things considered? Up front I will say that the fastest you can get back to living your life, the better off you will be (hearing protection considerations etc., but without overdoing it) and distracted from the noise. I think I was held back earlier this year because I'm working from home and was scared to death of getting COVID-19 and that making tinnitus worse. (I got COVID-19 last month and it didn't affect my tinnitus at all). Isolation doesn't help anyone with anything except like, infection prevention.

Prepare for a lot of change, and change is normal.

I can relate to your sleep issues. Before tinnitus I slept with earplugs for about a decade, and have been a terrible sleeper for as long as I can remember. The slightest stressor will ruin my night. Now, earplugs don't affect my tinnitus at all and now that I'm more comfortable with the tinnitus itself, I can use them without a problem. I did get used to not wearing earplugs but it took time, the right white noise track, and Trazodone. I still use Trazodone nightly and sleep as well as I ever have at this point (that is to say, still not great but a lot better).

I wish I'd found tinnitus podcasts sooner. The Tinnitus Talk Podcast, ATA's Conversations in Tinnitus Podcast, and Outring Tinnitus Podcast (I really like Frieder, he also wears earplugs to sleep btw). They really help you to get your head around the issue with evidence and practicality, as well as normalize the condition. i.e. plenty of otherwise normal and successful people have it and live their lives in spite of it.

The Oto app helped as well in early days.

A few therapeutics I've found helpful:

• Klonopin sparingly i.e. once weekly - a little more in early days. for me it was a lifesaver.
• Low dose marijuana edible I've recently found quiets my noise materially, doesn't take effect until the next day.
• As does Doxylamine succinate - once in a while I take half a 25 mg tab, the next day is much quieter.

Thanks for the tips and welcome @blamingeverything - I have some follow-up questions

- When you say earplugs don't affect your tinnitus, do you mean you can still hear it? Because earplugs definitely draw attention / amplify the ringing for me.

- How many hours do you get on Trazodone? I'm taking 50 mg (1 pill), but I'm at least consistently getting ~ 5.5 hours of not great sleep. I'm wondering if there's a way to push that up to 8, whether it's through dosage or something else.

- Is Doxylamine OTC or do I need to get a prescription from a doctor?

Thank you for the podcast + Oto app suggestions. I'll check them out!

 

[blamingeverything]

Happy to help!

When you say earplugs don't affect your tinnitus, do you mean you can still hear it? Because earplugs definitely draw attention / amplify the ringing for me.

Right, I still hear it, what's changed is that it's no longer amplified. It just is and it doesn't bother me any more than usual.

How many hours do you get on Trazodone?

I take a little less than 50 mg and the rest of my sleep duration and quality comes down to the other usual factors - how stressed am I, alcohol, sleep hygiene. More Trazodone hasn't helped me when those things aren't taken care of and further find that higher doses spike my tinnitus the next day. I'm usually in bed for 9 hours and aim to get 7-8 hours, accounting for some brokenness where I'll be awake in the middle of the night once or twice. Early on I was lucky to get 5 hours of broken sleep - give yourself time to adjust as you work on it.

Is Doxylamine OTC or do I need to get a prescription from a doctor?

It's OTC in the United States, I bought it on Amazon:

https://www.amazon.com/Basic-Care-Doxylamine-Succinate-Tablets/dp/B079HXLZGY/

 

[Jonnie]

@blamingeverything - I'm getting ~5 hours of broken sleep as this is all very new. I'm going to give Kava Kava and CBN a try as well. The doctor did say that the Trazodone is safer than Zoplicone, which is to be used sparingly.

Next Friday, I'm going to a new audiologist to do a HF test as well. I do feel like my left ear is a little less acute and certain HF noises really stand out.

I can relate to a lot of what you've shared, and it gives me hope that you seem to be doing well. Thank you again!

 

[blamingeverything]

@blamingeverything - I'm getting ~5 hours of broken sleep as this is all very new. I'm going to give Kava Kava and CBN a try as well. The doctor did say that the Trazodone is safer than Zoplicone, which is to be used sparingly.

Next Friday, I'm going to a new audiologist to do a HF test as well. I do feel like my left ear is a little less acute and certain HF noises really stand out.

I can relate to a lot of what you've shared, and it gives me hope that you seem to be doing well. Thank you again!

You're so welcome. I'd say as for sleep, embrace the suck for now. The early days of tinnitus are so striking and novel I don't know that there's a way around it. Personally, when i need an off switch and especially in those early days, Klonopin was it. I'd much rather take that than Zolpidem/Zopiclone, those drugs never worked well for me and left me feeling terrible.

It's really important to hear about people living despite tinnitus, that was the most meaningful thing for me and continues to be. That's where the podcasts really help. I'm living my life normally again but I still have down days, mostly related to poor sleep!

I bought some Kava but haven't taken the plunge of making it due to hearing how awful it tastes! I've taken the capsules as well and I do think they have some effect, although minor.

A lot of I's in this response but I hope it's helpful.

 

[Leila]

Hi @Jonnie, you mentioned you're a "digital nomad", does this mean you're often using a headset to communicate? Working from home during lockdown forced a couple of friends to do so and it didn't take them long to develop tinnitus. Two of them kept using their headsets and their tinnitus seems to have become chronical. One friend switched to speakers and a clip on mic and her tinnitus calmed down. The other two haven't said much after their initial inquiry, so I figured their tinnitus either must have calmed down or they've found a way to live with it.

I know dealing with tinnitus is hell, especially in the early days. If at all possible, try not to give it too much room. If all you focus on is the sound in your head, it has the tendency to increase in volume and suddenly it's all you can hear. Find a nature sound you enjoy and have that playing in the background when you go to sleep or maybe switch your exercise time to late in the day, so that you're physically exhausted and it's easier for you to fall asleep.

All the best!
Leila

 

[Jonnie]

Hi @Jonnie, you mentioned you're a "digital nomad", does this mean you're often using a headset to communicate? Working from home during lockdown forced a couple of friends to do so and it didn't take them long to develop tinnitus. Two of them kept using their headsets and their tinnitus seems to have become chronical. One friend switched to speakers and a clip on mic and her tinnitus calmed down. The other two haven't said much after their initial inquiry, so I figured their tinnitus either must have calmed down or they've found a way to live with it.

I know dealing with tinnitus is hell, especially in the early days. If at all possible, try not to give it too much room. If all you focus on is the sound in your head, it has the tendency to increase in volume and suddenly it's all you can hear. Find a nature sound you enjoy and have that playing in the background when you go to sleep or maybe switch your exercise time to late in the day, so that you're physically exhausted and it's easier for you to fall asleep.

All the best!
Leila

Thank you for the kind and helpful words @Leila.

During the day, I mostly don't notice it - I do feel my left ear is a bit less acute and I get a sort of static. I'm doing a HF hearing test on Friday, so I'll find out if it's hearing loss very soon. It's mainly the sleep that's rough - this has taken away my energy and focus during the day.

My last contract was February, so I haven't been on many calls. However if it is hearing loss, and not something neurological, it'd have to be my previous living situation, EDM concert I briefly stopped at and/or the yelling I did during a breathwork session. I'm sorry to hear what your friends went through. I'm now a huge advocate of earplugs for those around me.

Once again thank you. This community has immediately given me a bit of relief, being able to share space with others going through similar challenges.

 

[Leila]

It's good you're having your hearing checked, so you can be sure there's nothing physically wrong with your ears. I hope the ENT you've picked is a knowledgeable and understanding person who will take your suffering seriously.

They probably won't be able to offer you much of a treatment plan but it really helps if their go to advice isn't, "Are you open to try an antidepressant?"

When I first got tinnitus, I found it very hard to grasp that something that is such a horror to live with is basically shrugged off by the people you seek out for help.

You're right in you're perception that sharing your experience with other tinnitus sufferers makes a difference. I only signed up to Tinnitus Talk when I got a third tinnitus noise and that in my good ear and just being here and getting to talk to people who know what you're going through because they've had similar experiences has helped me a lot as far as my frame of mind is concerned. I'm glad the same happened to you!

 

[Travis Henry]

I'm excited to be a part of this community to learn, receive support, but also provide support for others.

Cheers!

Hope you can keep that excitement. I never had it from the start. My recommendation is to not take any more drugs or medications ever again and live as cleanly as possible for the rest of your life and eat an anti-inflammatory/anti-histamine diet. Keep your ears away from any high frequency sounds, wear protection during any loud activities and stay away from concerts forever. I messed up and made my livable tinnitus worse and worse, but I also had the COVID-19 vaccine & let doctors and family push me on medications which I think caused hyperacusis to worsen and let people push me to go to loud places still...

Even with protection on you can still worsen. Stay away from headphones. I hope you heal. Please be very careful for as long as possible. It sounds like your tinnitus could go away. Drink lots of water.

 

[Samwise_The_Loud]

Hi Jonnie,

Welcome! There's some great advice given already, but number one I would say is not to panic. Tinnitus has a relationship with stress, so try to minimise stress where you can for now.

Otherwise, try to use ear protection in loud places, and don't go anywhere that is crazy loud for now. Just hang in there, find a peaceful quiet place and don't make any rash decisions based on fear (strong medication and the like).

Also, ironic given your kind finishing words and I wish someone had told me but don't go on a deep dive on this forum. I would only stay on this thread, even then, only visit this thread maybe once a week. Take the lessons here and put them into action away from this forum. Otherwise, you will scare yourself with the stories of others and certain poor souls who are unfortunately in a place of extreme suffering but whose tinnitus/other issues are incomparable to your own experience. Feeding on their misery will make your fear of tinnitus worse.

Hope this helps and wishing you all well,
Sam

 

[blamingeverything]

Hope you can keep that excitement. I never had it from the start. My recommendation is to not take any more drugs or medications ever again and live as cleanly as possible for the rest of your life and eat an anti-inflammatory/anti-histamine diet. Keep your ears away from any high frequency sounds, wear protection during any loud activities and stay away from concerts forever. I messed up and made my livable tinnitus worse and worse, but I also had the COVID-19 vaccine & let doctors and family push me on medications which I think caused hyperacusis to worsen and let people push me to go to loud places still...

Even with protection on you can still worsen. Stay away from headphones. I hope you heal. Please be very careful for as long as possible. It sounds like your tinnitus could go away. Drink lots of water.

Bud, you're having about as rough of a go as it gets with tinnitus by the sound of it. I would just caution you about linking it to those things, which is easy to do (I blame many things myself!). Your tinnitus course may have happened this way without any of those medical interventions.

 

[Jonnie]

@Leila, since I'm still going through my doctor visits and trying things, I'm sure I'll undoubtedly encounter those things. Recent days it's been easier to be hopeful/optimistic. I am on Trazodone for sleep, which I'm not too fond of. I'm still trying different remedies to try to sleep without meds.

@Travis Henry, I'm sorry you've had such a rough time. My first few weeks were hell - it was especially frustrating since I was living a healthy lifestyle already. I found this article helpful.

Everyday I try my hardest to do things I used to enjoy (e.g., go out and see friends), and when I do, I feel much better. The good friends who truly care about you, will understand your condition, and not push you to things you don't want to do.

@blamingeverything, I do find every so often, I'm still searching for things in the past that may have caused my situation. The truth of it is many of us will never know for sure, since the ears are so intricate. But I do recognize it's not helpful either, so I also try not to dwell too long when it does come up.

@Samwise_The_Loud, thank you for these great tips. You're right, I've kind of realized this forum also has a lot of rabbit holes to negative mindsets (and to nobody's fault, this illness sucks!). I've been trying to stick to my thread, success stories and ones regarding treatments. P.S. I love your forum handle and avatar.

 

[Jonnie]

I was really struggling last night when I found out I contracted COVID-19. Combined with my inability to sleep, I felt like a mess physically and mentally. It just feels like no matter how hard I'm holding on and staying optimistic, the universe keeps piling it on. I feel feelings of anger, frustration, sadness, and loneliness.

 

[blamingeverything]

It'll get better, mate. Early days.

 

[Jonnie]

I just wanted to share, today I had a bit of progress and I'm a bit better than the day before.

Last night, I used Tylenol Night, followed by Zopiclone, and when I woke up again, Tylenol Night. It got me through the night with a bit of sleep, which is important since I have COVID-19.

Everyday, I'm fighting minute-by-minute, hour-by-hour, day-by-day. Some days seem harder than others, but I'm determined to survive, and someday thrive.

Today is also my birthday

 

[blamingeverything]

I just wanted to share, today I had a bit of progress and I'm a bit better than the day before.

Last night, I used Tylenol Night, followed by Zopiclone, and when I woke up again, Tylenol Night. It got me through the night with a bit of sleep, which is important since I have COVID-19.

Everyday, I'm fighting minute-by-minute, hour-by-hour, day-by-day. Some days seem harder than others, but I'm determined to survive, and someday thrive.

Today is also my birthday

Try the Doxylamine! And keep with it. More ups and downs to come, before long it won't even rank on your mental list of worries.

 

[Joe Cuber]

I just wanted to share, today I had a bit of progress and I'm a bit better than the day before.

Last night, I used Tylenol Night, followed by Zopiclone, and when I woke up again, Tylenol Night. It got me through the night with a bit of sleep, which is important since I have COVID-19.

Everyday, I'm fighting minute-by-minute, hour-by-hour, day-by-day. Some days seem harder than others, but I'm determined to survive, and someday thrive.

Today is also my birthday

Happy Birthday @Jonnie - Keep it up! Once you get over COVID-19, I'm sure you'll be getting better sleep and you'll be able to tackle your tinnitus too. I got COVID-19 after my tinnitus onset, and it really sucked, everything went haywire, but after COVID-19 ran its course, my tinnitus went back to its usual routine. No one deserves this, especially on their birthday, but by your next birthday, I bet you'll look back and see how far you've come.

 

[Jonnie]

Thank you @Joe Cuber - these words of encouragement were needed!

I wanted to share some small wins today:

• My COVID-19 symptoms have improved.
• The new room I moved into is more peaceful than before.
• I noticed my right ear multi-tone ringing is not as perceptible, unless I plug my ear - I think meditation, breathing exercises, and not focusing on it has helped.
• Both the ENT & Audiologist have seen my audiology test and say I don't have hearing loss.

There are also some frustrations to vent:

• An ENT did a phone consult today, and he was not very helpful as most people have shared - is convinced I grind my teeth at night - but I plan to see the dentist anyways after my COVID-19 subsides to rule out anything mouth related.
• I'm pretty sure taking Zopiclone makes me feel foggy. I think I'll stick to Trazodone, even with the stuffy nose side effect.
• The static/ringing in my left ear feels strong, but it feels more in my brain than my ear.

 

[Joe Cuber]

Sure thing @Jonnie, glad you got some wins, it helps to think of the positives. Glad you have a peaceful room, hopefully you can get some good sleep there.

I take Trazodone too, 100 mg/night to help me fall asleep. Works well for me for that purpose.

When I was going though COVID-19 and was pretty miserable, my wife told me something that I still remember. She said, "Your mind is stronger than you know." She was right. A big part of it is a mind game. When I got in the habit of looking at the positives and did things like meditate and small chores like sweeping the porch, my mind became my ally.

 

[Scarface Tony]

I was doing really well with tinnitus fading slowly day by day as I could hear it less, but last night I had a severe backache, couldn't move, couldn't walk. So out of desperation I took one Tylenol extra strength (500 mg) and within 2 hours my tinnitus came back loud. Usually my mornings are the quietest but today it was not. Could it be due to the Tylenol? I will avoid Tylenol even if I have to stay in pain.

Silence is better than pain, backache will get better with or without medicine.

 

[Jonnie]

Quick update: Slowly, but surely, things are improving

A key part of recovery is reducing stress. I've finally moved back to my family's place where they are helping me out day-to-day.

I still hear the tinnitus and audio distortions, but my anxiety has been greatly reduced. Some of the things that have helped me:

- Doing CBT with the Oto app
- Keeping myself busy mentally and physically (yoga, meditation, etc.)
- Eating healthy and working out
- Switching medications from Trazodone to Mirtazapine, which is giving me better rest (at the expense of grogginess)

In a couple weeks, I'm going to try to get off the antidepressant and see if I can sleep on my own accord. I'm definitely feeling much better mentally (like my old self), and I feel I am able to work very soon.

I am optimistic I can return to my former state (or even better), even if I have to live with tinnitus.

Sending good vibes to those who are struggling - keep fighting the good fight!

 

[Jonnie]

New Year's Update:

Time has gotten me through the initial on-set of anxiety and depression. In the past couple of weeks, my tinnitus, which changes tones and frequencies, has calmed down A LOT. This coincidentally coincides with when I started noise therapy. (A friend of mine is an Audiologist and hooked me up with demo hearing aids. He boosted certain frequencies in hopes to exercise some of the high requency hearing loss in my left ear.)

I'm slowly tapering my sleeping medication (Remeron/Mirtazapine) and feel confident very soon I may not need it at all.

I started a new role which I love, and have filled my free time with exercise (e.g., climbing, volleyball, etc.)

For every tough day you go through, remember the good ones, because they will come back!

 

[Joe Cuber]

Way to go @Jonnie, really happy to see that you've improved a great deal

 

[Jonnie]

Looks like I spoke too soon, last few days my tinnitus has rebounded with vengeance (loud and obnoxious)

 

[Joe Cuber]

Oh no @Jonnie, do you know if there's a cause for the rebound, like the tapering off the sleep meds?