Cycling Tinnitus with Good and Bad (Severe Reactive Tinnitus) Days — What's My Outlook Like?

Hello,

As some may know I've been dealing with my second bout of tinnitus, first one was from gunshots in 2016 and recently in January, a 120 dB car alarm went off in my ear. I could only hear it in super quiet rooms or when I smoked weed.

First week I noticed my tinnitus was heightened, and it started to react to fans, which it did when I first got tinnitus. Nonetheless the first week wasn't bad, definitely spiked but nothing severe.

Long story short, I had a freakout a week later and I woke up with raging loud tinnitus. Went to bed the next night and it was back to normal, maybe a little heightened like the first week.

Ever since then it's been 1 day of fairly mild tinnitus where I can't hear it outside and 1 day of reactive tinnitus that ramps up to extremely severe levels throughout the day. Around 2-3 pm I am nearly debilitated. In the beginning the pattern was 1 day on, 1-2 days off. Then 3 days on, 1 day off.

Finally, this month, for the first time in 6 MONTHS, I got 2.5 good days, then 3.5 good days, then last week 5 days of mild tinnitus in a row. It was so blissful. A couple of those times I had to shower it away or run my ear near the faucet.

Unfortunately, on the bad days, it is just as severe as in the beginning, as it immediately ramps up to compete with any outside noise, not just fans or cars etc. I can walk outside in the morning and it rides over any noise.

My bad day tinnitus is much higher pitched and electrical sounding, sometimes centralized, but mostly in my left ear.

It's been almost 7 months now, and I guess my question is, what are the chances I can get back to normal mild tinnitus days? Anyone have any similar experiences?

The only thing I have changed is trying to relax more (very difficult), and diet. I have not had a single carb or gram of sugar since June 1st.

Thanks.

 

Mine just started in December but I have a similar pattern. As we’ve talked about before, weed really affects me. Last week I was having some rough days out of seemingly nowhere, my wife pointed out that for the previous 3 nights I’d eaten giant cupcakes. Which is atypical for me anyway, but sure enough, one night without sugar and bam, back to mild.

I am open to the possibility that it’s related but not totally convinced. My anxiety has been ramped about other life stressors thankfully not driven primarily by tinnitus. So it could’ve been that.

Anyway. Hope to hear what others have to say. I just never expect to get good news here, it’s a very specific user base after all.

 

Tinnitus is very individual so probably no one can tell you what the future holds. But it's a very good sign that you have experienced improvement. So there is no reason why it shouldn't continue to improve if you relax and protect your ears.

 

Wow @BrysonKingMe, you pretty much nailed my current experience. Completely on for 1-2 days, then completely off/mild for 1-2 days. Rinse and repeat. When it's on, it's on full blast, an electrical hiss in my right ear, rising above all outside noise, sometimes competing with the shower.

This has been happening to me for 4 months. Very slowly getting more good days than bad.

I'm heartened to here your mild consecutive mild days are getting longer. Hopefully that keeps extending. I'm wondering, like you're probably wondering, whether the intensity on the bad days will lessen over time.

 

I'm jealous of those that say their tinnitus has improved over time. For me the best thing I can scrape up to say is that I'm doing my best to mentally get used to it which isn't all that encouraging. I was hoping the reactivity component of my tinnitus would settle down over time but unfortunately it's not changed. I believe the reactivity component of tinnitus is not simply what is typically referred to as hyperacusis by some. I have reactive tinnitus plus some degree of hyperacusis. They are still both the same since the onset.

 

Do you believe you're coping a little better with the severe unmaskable intrusive reactive tinnitus than before? Is your reaction to it better at times?

 

When I get a good night's sleep, then I'm able to cope with it better. But that doesn't always equate to a better day as that depends on many factors - mentally, emotionally & physically. Just knowing what triggers it & learning to not over react to it was a learning process over months & still an ongoing process. I'm still very frustrated with it as I have to limit or sometimes avoid doing things I love to do such as playing piano/keyboards or watching sports on TV/YouTube. I also am very stressed because I'm not working at present time & want to be able to find a job in the near future that won't greatly affect my very reactive form of tinnitus. Wish these perceived sounds would take a holiday, but that's asking a lot.

 

I understand. I hope and pray there are treatments for us in the future.

If you think reactive tinnitus isn't hyperacusis, then what could it be?

I agree good sleep can help me react to it better emotionally too.

 

Hyperacusis in general is an umbrella term for sensitivity to sounds. Usually external sounds seem much louder then they actually are to healthy ears. It's some form of amplification that happens in the auditory system or even perhaps certain areas in the brain for whatever reason. It's commonly referred to as low sound tolerance. Some have the type where they can even hear their eyes move. That somatic form can be corrected with surgery. I hear a loud tone sound when my fridge compressor is running. Nobody else hears it. Sometimes I hear the lights above my vanity in the washroom. Those are examples of hyperacusis.

Reactive tinnitus is where an external sound spikes your tinnitus for a duration of time but eventually goes back to 'baseline'. It's like an irritation. My tinnitus will compete & outperform the external sound i.e. TV, radio, music instrument, etc. Hence why it's not possible for me to mask my reactive tinnitus.

There is no professional acoustic test for reactive tinnitus but there is one for hyperacusis: the loudness discomfort level.

Some like to include coffee, salt, sugar, and certain foods that they say spike their tinnitus. But those aren't included in the definition as Dr. Neil Bauman has defined it in his article on reactive tinnitus, which I think is the proper way to define it.

 

I have one more question if you don’t mind me asking. What quiet activities do you do when you’re spiking so bad that you can’t listen to anything? What do you do when spikes get unbearable?

 

Depending on time of day - I will do my chores i.e cooking, cleaning, laundry or get involved in political discussion online (as long as I don't feel to stressed by the subject) or watch talk videos on different subjects or go on Twitter or Facebook.

 

Hello everyone,

Just an update to my situation. When I got back from Korea I realized that this was all benzo-induced tinnitus. I had cold turkeyed Klonopin in 2020, 0.5 mg a day, with no issues after using it for 4 years.

One year later I had a spike from a car alarm that I mistook as noise exposure. I had a panic attack and took a Klonopin at the same time and it was just a very confusing situation for me. This is why my tinnitus was cyclical.

In an effort to get my life back, I have been tapering Klonopin for about 6 months and I'm on 0.034 mg a day. It has been the most brutal and horrible experience I have ever gone through in my entire life. The noises in my head change everyday, I noticed a really bad period between 0.16 mg and 0.125 mg where I had a dentist drill going through my skull for days at a time. Luckily that has not come back but I'm not sure what will happen when I'm completely off the medicine. It's either going to get a lot worse or a lot better.

At this point I have head noises everyday, very electrical and changing all the time. They are reactive as well so they are quieter in a quiet room. I have made compromises with myself saying that I could actually live with this electrical storm in my head if it didn't go away when I'm done tapering, but I do have another problem that has come up.

I have tones that I didn't have before and very severe hyperacusis. Very low volume sounds Spike the tinnitus for days at a time, I just recently bought a Toyota Tacoma and the third or fourth time driving it is when stuff got really bad and I had burning ear pain. And the tones got really loud.

Currently I have taken medical leave for my job, but was wondering if anyone had any advice to help with the reactivity. I'm hoping that this will subside in the following months that I am off the benzo completely since it happened right when the hyperacusis happened as well. I'm pretty much trapped in my room at all times which sucks but I am so desperate to get my life back I will continue doing this if it means I have a better chance of healing.

1. I have read some horror stories pertaining to benzos and reactive tinnitus here, do you think I should continue to be overly protective for the next following couple of months as I should be off of this garbage in a week?

2. If anyone has gone through a similar experience pertaining to hyperacusis and reactive tinnitus when withdrawing from benzos, did the reactivity get better?

Again, I never thought I'd be saying this but I'm willing to cope with the electrical shit show in my head as long as I can go live my life.

 

I'd be so interested to know what happens if you're completely off Klonopin for say 6 to 12 months. On BenzoBuddies there are many stories of people who had lingering effects for many months, some even years, after quitting benzos, but eventually they got better.

I have this "intuition" you will get a lot better after your body has completely cleared of it and been clean for a while. I only know that brain plasticity is slow progress and reversal of bad effects can take some time.

It looks like you do have a very bad case of this, I'm sorry I don't have a successful anecdote to share with you.

 

Needed to hear that, thank you.

I would be almost positive that this would settle down if I didn't cold turkey in 2020 but I have no idea what reinstating did. I had no idea this crap could cause tinnitus as I was on it originally for mild tinnitus but my psychiatrist and college just kept me on it for 4 years.

What's crazy is my mild tinnitus even got better when I cold turkeyed Klonopin and I felt amazing for a year. I also had zero side effects besides some legs shaking and a little agitation for a couple of weeks. Then comes a super loud car alarm that spiked it to moderate levels for about a week and I rushed back to the Klonopin because that's what I used it for originally. The day after I took that Klonopin my life changed forever.

Psychiatrists, TRT specialists, ENTs all blamed it on anxiety and so I kept taking the anti-anxiety drug. F'd up my life real bad.

I also know I would have been fine if I had stopped Klonopin within the first month or so, but I kept taking it for 6 months and I kept getting worse and worse and worse so I really had no choice but to taper down.

Symptoms I have now are brain crushing tinnitus, severe hyperacusis, anxiety, panic, insomnia, suicidal ideation, extreme twitchy body and more.

I have lost my six-figure job, ability to drive or do anything and pretty much my whole life so my brain has a lot to fix. I'm 29 so I'm not sure if my youngish age will be in my favor. I have a feeling that the brain altering drug is stronger than any age-related healing.

I had no idea what I was putting in my body for 4 years unfortunately.

 

I'm not proud of it but I was addicted to Valium at one point... It did make me miserable when I got off it and I didn't even cold turkey. My hearing was very sensitive, the tiniest of sounds felt like launching an attack on my ears and my tinnitus was BLARING away. It's like the gain was increased. The agony continued for several weeks after I was already off it.

I'm now better and will not touch benzos again any time soon...

 

I am at 0.034mg Klonopin, I plan on jumping from this dose in a about 10 days.

Looking for more reassurance that this could settle down, I feel like I am going to end up maimed/disabled from this, locked in my room with loud reactive tones and screeching in my brain.

I would say it is a true 10/10 after this last cut, extremely intrusive electric hiss through my brain and about 8 tones, with severe hyperacusis.

I definitely would have stayed on the Klonopin if I had known this reactive tinnitus shit was going to happen cuz it guaranteed me good days and I was still able to drive and live my life.

I'm not sure if there's a chance here to updose and wait it out for the Shore device or if it would be smarter to go down to 0.

 

Don't beat yourself up too much about the medication man, I've got the same reactive hiss and I didn't even take any meds for mine to develop.

Actually as I'm writing this, my hiss is full blown sizzling my brain. I had a setback last week which caused the hiss to go haywire. But anyways, I took Magnesium 450 mg glycinate and my hiss eventually went almost completely away. Have you tried any supplements?

I also have the multiple tones thing going on and fans are also my enemy lol. Just wanted to stop by and say you aren't alone. I have almost exactly what you described.

I personally feel that the reactive hiss is actually the tensor tympani nerve constantly fluttering making the hissing sound. But like I've said it, went away for a good while so have hope that this isn't going to be forever.

 

Thanks for your support, but maybe I have described my tinnitus poorly, because it is not a hiss. It is a screeching , mind crushing noise that moves all over my head that feels like it is ripping my skull apart. It is the most chemical ungodly noise you could possibly imagine. I writhe around in pain when it's at its worst and can't listen to anything on my computer or leave my room.

My tinnitus was caused by Clonazepam, so unfortunately there are no supplements that are going to help this.

 

My tinnitus, which I have had for 15 or 20 years maybe, seems to go up, down, and change pitch seemingly of its own accord. I've tried numerous strategies to try and figure it out w/ no luck. It just does what it does. The tricky part in this is that while it's a real thing, we experience it subjectively many times. If I'm out and about, it could be very loud but I would be unaware of it due to sounds outdoors.

Meditation often increases my awareness of it, so was it that loud all along, or did I just become more aware of it? In the end the results are the same. Biking or any exercising gets my blood pressure up due to the exercise and that makes it louder, but it always goes back down. Weed really amped it up! That is no longer for me, and I'm better off w/o it anyway.

Mine was largely caused by antibiotics, and a doctor that kept brushing me off when I went back to them several times complaining about it. This may not be news to most of us, but not everyone in the medical field is caring or competent. Like others here, I find that the best thing to do is to find masking noises that work and stay busy doing things I enjoy. Getting quiet housing is a priority, ever since I got this it sorta controls a lot of my life, but that's OK. If it wasn't this it would be something else.

 

Mine cycles, but it cycles throughout the day rather than over days.

I've had tinnitus for over 15 years but had learned to live with it & could do most things with basic ear protection. Then last Febryary (2022), it suddenly changed to a loud fire alarm noise, very loud & unceasing. This lasted for about 10 days & I was almost ready to call it quits at one point. All ENT could offer me was an MRI - no way was I risking more damage.

It then changed to what I have now: musical tinnitus (or MES) overlayered with the usual tinnitus noises of engine-like sound, or high winds, hisses, & tones. Now there are some days when the MES is more bearable than others, but some days I hear noise that sounds like something from Dante's "Purgatorio". At present I have Dancing Queen, with thrash metal over the top in my right ear, & the usual tinnitus in the left. Other days it can sound like someone playing seven keys on a Wurlitzer all at once - a cacophonous racket.

It seems to be reactive too - it quiets to about a 3 or 4 around 5am, but then builds throughout the day with noise exposure until by 7pm it's 11 out of 10 & stays high all night. I can't sleep properly or concentrate on much. On top of this I have severe hyperacusis which hates voices & digital sound - so no sound enrichment for me as it gives me pain & the tinnitus (both kinds) reacts & ramps up to outcompete the sound. Even the very lowest volume on my PC speakers for mere seconds sends my tinnitus skyhigh for hours.

ENT have no answers, there was no noise trauma, no medication changes, & a CT scan ruled out anything sinister (although the CT worsened my engine noise tinnitus possibly permanently). They now seem to have lost interest in giving me any answers as to causes & I am stuck with Audiology who gave me the "don't overprotect" speech. So now I wear earplugs/ear defenders when out but try to leave them off in the house except for noisy environments like the kitchen & the shower, but it feels like it's getting worse due to this noise exposure not better. Except for medical appointments I'm housebound.

I don't have any answers but I just hope one day it settles back to previous levels or at least to a level I can live with. I'm due back at Audiology end of next month & between now & then I'm stepping up the ear protection again & hoping it settles so I can start to slowly increase sound in due course. Audiology won't be happy when I turn up in ear defenders again, but you know what, I have to live with this - not them.

All I can do is say I really can empathise & I hope your tinnitus improves @BrysonKingMe.

 

@momus, I've also found that attempting even gentle exercise sends my tinnitus soaring for the rest of the day/night. With how bad it is 'at rest' at present, I've been too apprehensive to try again which is not good long term.

 

Well, today is the last day I ever put this DOG SHIT in my body.

My brain has a lot to fix.

I don't think many people understand what they're taking when they put a benzo in their body. I am 29, this started right after I turned 28 and if you could see me before I put this trash in my body and now, you would be shocked.

I was happy, healthy and in great shape.

I've lost 55 lbs, I have severe hyperacusis and bad reactive tones, and on worst days a dentist drill going through my skull.

Lost my job, sanity, probably lost my girlfriend here soon too.

Please keep me in your thoughts because this is either going to get a lot better or a lot worse!

 

You got this buddy.

Keep exercising till exhaustion. Eat super healthy.

Build back one day at a time. We are all rooting for you!

Daniel

 

Thanks man, I didn't even know this level of tinnitus exists. If your tinnitus is in your ears, be thankful!

I really think benzos cause the worst tinnitus imaginable. Shrieking white noise ripping your skull apart.

 

I'm praying for you now.

 

Hang in there man. I am in the same boat as you. I was at the peak of my life (30 years old), healthiest I had ever been and just started my engineering career a year ago after 6 years of sacrifice to get through college.

I'm on the verge of losing my career and everything I own. Just hoping my girlfriend can hang in there as I try to make it through this. She has been a blessing through this journey but I know it starts taking a toll, going from enjoying a normal functioning life to a life of isolation.

 

@BrysonKingMe, if you are down to that low amount of Clonazepam and you want to come off, I'm rooting for you mate. Pick a day, jump off, and replace with a good high dose Magnesium glycinate.

You say you took it daily and for 4 years. To get an insight:

Did cold turkeying Clonazepam ramp up your mild tinnitus and cause hyperacusis, even a little?

I've read that it can take a month or so for it to settle after jumping off. I think you have done well to taper off in reasonable time and should be proud of yourself. At such a minuscule dose now, it may be more psychological than physical.

Looking back at your event it seems the loud noise exposure caused your relapse and the Clonazepam you took just coincided with it.

 

My heart goes out to you. I don't think I had it as severe as you did, based on your description, but you are the only other person I have found who describes a noise moving all over your head. When I first got tinnitus after a short course of Clonazepam and Trazodone, it was like that. Top of the skull, right temple, left temple, base of the skull, etc., just moving all over. The worst was the back of the throat. I didn't bother describing it in my intro thread since I didn't think anyone else could understand it. It is slowly calming down.

I hope you have improved in the months since stopping the medication. I hope you get back to your normal self. You are young man and that is a huge point in your favour. Keep going strong!

 

If it's what I had, was it like a super high frequency (~11000 Hz) static sound?

I still have it some days, but it's at such a low level I can usually ignore it. I knew you could get it from withdrawing, but I didn't know you could get it while taking it. In my case I was paradoxical so the more I took, the worse it got. I gave up trying to explain what it was like to people, a lot of people said "oh I had that too!" Lol.

It got so fucking bad while on it and while tapering. I will never be able to describe the noises I heard in my head, and I am completely fucked up from this experience and how long this has been going on for. The tinnitus is not as big of an issue for me anymore, I still have tonal tinnitus that I've always had, but it is much worse and insanely erratic from the severe hyperacusis I got.

Hanging in there I guess. Apparently it gets better, mine is still horrendous.

 

Nick, I just saw this, but I can 100% say my noise exposure had absolutely nothing to do with my tinnitus, but you would (and I did) think that because of the timing of it all.

The tinnitus was from the benzo, and the insanely severe pain hyperacusis I have now is from the benzo as well. I had mild tinnitus and no hyperacusis before taking it.

You get ONE chance with these drugs. Once you withdraw (if you ever choose to), do not ever get back on it. That's when the problems start.