Low Drone Tinnitus Does Not Need Much to Shut Down Completely

I would also find MEM to be a logical diagnosis, but even then - Dr. Bance does not think what I have is MEM. For anyone that does not know who Bance is... he is the absolute king of everything middle ear related:

Manohar Bance is an Otologist/Neurotologist and clinician-scientist at Cambridge University, and the inaugural Professor of Otology and Skull Base Surgery at the University of Cambridge, UK. Previously he was the Professor and Head of the Division of Otolaryngology-Head and Neck surgery at Dalhousie University until April 2017, where he was Director of the EAR and SENSE labs in the Division of Otolaryngology. Manohar is clinically active in middle ear surgery, cochlear implants, middle ear implants, eustachian tube disorder, skull base surgery and vestibular disorders with research interests in cochlear implant stimulation strategies, middle ear reconstruction and mechanics, bone conduction hearing, Eustachian tube disorders, gene and pharmacotherapy for inner ear disorders, and vestibular disorders. He has held several research grants in these areas, and is particularly involved in medical device development and translation.

He has over 130 peer reviewed publications, is a board member of the Politzer Society, a member of the American Otology Society, the American Neurotology Society, the Triological Society and the Collegium Otorhinolaryngologica Amicitiae Sacrum anda Council member of the RSM Otology section. Manohar is also American sub-specialty board certified in Neurotology, and is an editorial board member of Otology-Neurotology, and the Journal of Advanced Otology.

 

Hello Ben, I recently joined the forum and have been reading your posts. Chapeau! It’s a ton of information, for instance on BRAI3N. I have been postponing contacting them out of fear for being disappointed yet again. I’ve been suffering from tinnitus since 2013 and, like most of us, have tried just about everything to soften tinnitus. The big ones were rTMS at UZ Gent and about 100 sessions with esKetamine (Spravato) at Jessa Hospital in Hasselt. They did nothing for depression and tinnitus. Recently I’ve been having godawful tinnitus spikes. So I’m now trying Deanxit and Rivotril. That’s how I came across your posts. It’s somewhat comforting that we’re neighbours as I live in Sint-Martens-Latem. I’m now a complete zombie and tinnitus is still roaring. Today, after trying for 2 days, I’ve decided to dump the Rivotril. I hate benzodiazepines anyway. Getting off them in the past was a nightmare. So I’m now left with Deanxit.

Are you still taking Deanxit and, if so, are you still happy about its effect on tinnitus? Did it work instantly or did it take weeks, months? Please let me know will you? My partner is against Deanxit because of all the negative news. For me right now it’s the last straw.

I look forward to your reply. Take care, groetjes, Eduard.

 

Hai man,

I'm no longer on Deanxit, no. I felt like it worked quite fast for me.
I think I best describe the effect Deanxit had on me as: Deanxit made me care less about the noises, and look less for them.
The reason I stopped was obviously that I really want to try and be medication-free, especially heavy meds.

Only thing I'm taking currently is 5-HTP (supplement that creates Serotonin) and Resveratrol. (just got off of a Prednisone course because I had another unfortunate recent acoustic trauma at a tire shop).

What does your tinnitus sound like and how does it behave?

 

Hi Ben, thanks for the speedy reply. Tinnitus is in my left ear, or should I say that’s where the brain areas responsible are sending it. It’s a constant static like sound, like we used to hear when changing stations on the radio. Perhaps you are too young to remember! Of late, it has become so loud I have to turn the TV volume to 40 to mask it. I have mild hearing loss in my left ear and was prescribed a hearing aid by Lapperre. I hardly ever put it in though. No improvement there. I’m in a bit of an emotional roller coaster ever since my Mum passed away and I lost contact with family in Holland. I’m from Amsterdam. As long as I can remember I’ve been highly sensitive. Hyperacusis runs in the family. Dogs barking, lawnmowers, leaf blowers, kids playing football, I can’t stand it. Any irritating noise makes tinnitus worse. Not to mention stress and worrying, catastrophizing.

Bye for now, good luck with the 5-HTP. Ever tried Serotonin enhancing ADs? Okay, I see that you don’t want to medicate yourself. Fair enough. What happened at the tyre shop?

P.S. Your English is really good. Are you a native speaker?
If not, we could communicate in Dutch. But that wouldn’t be right on this forum of course.

 

I don't know if you are still in contact with him, but why don't you propose to Dr. Bance to make investigation/write a paper about our type of tinnitus and associated symptoms? We are quite a number for a study. And he was right about Tegretol. In my case both Tegretol and Trileptal at small doses reduce symptoms.

 

How long did you take Tegretol before it had an effect? What dose did you take?

I chickened out after 1.5 weeks of using it because I researched it too closely > it's ototoxic, of course...

 

After 1-2 weeks of 200 mg of Tegretol or 300 mg of Trileptal I noticed the effect. The low humming was nearly gone unless I "awake" it by car ride, pressing the bad ear, expose to vibrations etc... When I stopped taking the drugs, it returned. Now I am trying Ambroxol as experimented by some people here, should not be ototoxic I hope.

 

Your experiences are invaluable, pretty please do share everything you find out:

If I remember correctly ,you stopped taking Tegretol and Trileptal because you were getting some unwanted side effects like general head vibrations, correct?

When you say "it stopped", do you mean you could just be in a totally quiet room and it would not start up?

Which Ambroxol brand are you taking and at what dosage?

Sorry for the barrage of questions.

 

Hi,
I stopped Tegretol suddenly when one night I woke up feeling like being drunk with a loud head tinnitus (completely different from my hissing and low drone, it went away the next day). I also stopped Trileptal due to non bearable genital and urinary burning.

With both drugs I could not hear low drone in the silence and could sleep without low frequency masking, except some days when it was there at low volume. They improved the hissing but not eliminate it.

No big success with Ambroxol, I am on fifth day (Mucosolvan extended release 2x75 mg per day), hissing is still there, maybe more bearable, low drone is still popping out each night at low volume, and I have to use low frequency masking.

 

Too bad both Tegretol and Trileptal are both mentioned in this paper as being ototoxic and long-term treatment may result in tinnitus, phonophobia, sensorineural hearing loss, dizziness, ataxia, disequilibrium, imbalance, nystagmus, abnormalities in saccadic and pursuit eye movements and delayed conduction within the cochlea, auditory nerve and brainstem auditory pathways evidenced by abnormalities in Brainstem auditory evoked potentials and nystagmography recordings indicating auditory and central and/or peripheral vestibular dysfunctions.

I guess not everyone will get that unwanted side effect, and also not sure if it is permanent damage or if it subsides once you stop taking them.

 

@Maria Francesca, I re-read another post of you just now where you mention you have trouble sleeping.

Same here. I have tried about 10 supplements to help me with sleep and finally after 2 months I have found something that actually works.

It's 5-HTP - I have no clue how but it absolutely works. pretty much from the first day I was taking it.

I'm taking 200 mg before bed, and have recently ordered a 100 mg time release version, to see if that works even better for longer term action.

I'm on the 5th day on 5-HTP and have seriously not slept this good since 10 months, and trust me, I m not the kind of person where placebo comes into play.

 

L-Tryptophan is converted into 5-HTP which is then changed into serotonin. L-Tryptophan is commonly prescribed for sleep disorders and is usually fairly safe. Once you get to 5-HTP and especially serotonin, you become more and more susceptible to imbalances and large swings.

Glad it’s working for you.

 

You mean the more I use 5-HTP, the more moodswings I'll have?

 

@Ben Winders, thanks. I have tried 5-HTP but it gives me an additional ligth tonal tinnitus. Sleeping is now improving, I think because I am moving away from withdrawal from Rivotril. I am taking Ashwagandha on alternate days (it can also give dependence) and a LOT of Magnesium before bed.

 

Why doesn’t Dr. Bance think you have MEM? I do know of Dr. Bance, and have connected with several of his patients. Many who’ve had him perform surgery to cut their middle ear muscles.

What you have sounds exactly like what I had three episodes of now, which I have linked to hormonally driven cochlear Hydrops.

I recently gave birth, and in the week prior, my on/off humming (truck idling sound) returned.
True to form, it stopped and started and I could silence it with an earplug or by laying my ear on my arm when resting. To me, this has to be a mechanical phenomenon.

Now that my hormones have settled, it has gone.

 

This is Dr. Bance's reaction to my email listing all my symptoms:

"I am not sure this is MEM to be honest, sounds more like efferent system or neural, and I would have recommended carbemazepine as well. If that does not work, you can arrange a consult via my secretary, but I would hate to charge you unless I thought I might actually be able to help"

 

Did you follow through about the "efferent system or neural" part of the email? I'm still having trouble understanding how this would be neural.

Also, if it's not sensitive, how did you reach Dr. Bance? Just wrote an email to him?

 

I didn't follow up with the efferent / neural part.

Just sent him an email , yes > he did reply to me that his email is not really to be used as it is not secured, everything needs to go through his secretary. It did get me a reply from Dr. Bance though

I did Google efferent / neural and came to this "conclusion":

Efferent refers to efferent nerve endings of the cochlear hair cells. Tinnitus can be present in people where these nerve endings are lost or damaged.

In that same document where I learned about efferent nerve endings there is a treatment > the complete surgical removal of a segment of the cochlear nerve.

One hundred-one of the lSI patients obtained complete and lasting relief from their preoperative tinnitus. Fortythree patients, although relieved of their troubl esome preoperative tinnitus, still stated that tinnitus was present, although acceptable and not disturbing. They considered the procedure a success. Cochlear nerve section failed completely to relieve the preoperative symptom of tinnitus in seven patients (Table 3).

Document referenced : https://journals.sagepub.com/doi/pdf/10.1177/014556139507400708

 

Wouldn’t this cause deafness? Or maybe just deafness (HL) in that range?

 

Yes.

 

That's really interesting! That would explain why it helped (don't dare to do it any longer) for me to with my index finger, press/pump a few times rapidly on the cartilage “lid” next to the ear canal of my left ear to build up a slight vacuum, and then let go. This would temporarily make the hum/drone stop for me maybe for 10-20 seconds or so.

Now, since I have a new tinnitus sound (high pitch, oscillating sizzle) since soon three months that happened in my left ear when listening to music at night (low volume – "supposed" to be harmless – ear "chirped" for two seconds and the new tinnitus started) I don't dare to do that anymore. The drone feels as if it's coming from the head, but it sure seems related to the left ear. I also sometimes have this kind of crawling feeling in the leaft ear/eardrum, maybe it is this tensor tympani or the stapedius muscle doing things?

 

I don’t really hear mine unless I’m in a quiet room, and when I am I have two other tinnitus sounds in each ear that bothers me more.

But maybe an earplug of the kind that lowers all frequencies evenly and just dampens a little decibel wise would work?

 

Yup, I have this crawling feeling too. That's 100% physical.

Very big plot twist happened today and keep in mind, I am 13 months into this nightmare.

I put my background noise last night at very low volume for sleeping, which usually results in a more persistent drone during the day.

On this day though, I took a seat in an office chair (in my home) that I hadn't been sitting on for the longest time.

I was sitting there, working on my laptop, drone was buzzing at 6/10 volume. But then... I decided to take a break and put on a YouTube video which made me slouch a bit in my chair and bring my chin closer to my chest.

What happened next had me almost in tears (note: first time I have been able to do this since onset), when I brought my chin to my chest, the drone was gone. Gone!
I was so thrown off that I even yelled at my girlfriend to come join me. I brought my neck back up and whaddayaknow, the drone came back to 6/10 level. I brought my chin down to my chest again, drone was gone again.

Now I'm even more sure than before that this is muscle/tension related.

What other tinnitus turns itself off completely some days. What other tinnitus is 8/10 ON after a short car ride and then starts to clearly, audibly stutter before stopping.

Now, that said, I still believe my acoustic trauma started all this, as is being mentioned by this paper on muscle/tension related tinnitus:

"Diagnosis and management of somatosensory tinnitus: review article"

It states that while acoustic trauma can be the trigger for these issues (muscle tension in/around the ear), but the thing that keeps it alive / buzzing is that muscle tension.

Now the million dollar question: how to fix this.

 

@Ben Winders, I believe there is a lot of truth to/in your "discovery".

Forward neck position, bad posture, and tension in both neck a jaw is crucial to get sorted. I would recommend you to work with your posture, and start with doing chin tucks, gentle stretching of neck, and possibly light massage of the jaw masseter, on a regular daily basis.

You could also consider adding in some myofascial treatment with a trained specialist.

 

Interesting you should say this. My LF drone has just gotten better. I am taking AC-11 which is Cats claw extract and supposed to be an anti-inflammatory. There are many published papers that theorize muscle tension/musculoskeletal as the main culprit, triggered by an external event (usually acoustic trauma).

If you believe that the chin tuck is doing something or helping your condition, maybe have a look at these exercises.

Ringing in ear (tinnitus) treated by the neck...

 

Heya! Just jumping on this!

I have lots of ear issues including this hum/revving drone too. It's so strange because it behaves very differently to my other tinnitus sounds. Example, if I hum, or sit in the car, the hum will dissappear but the other noises remain, and it is more of a feeling aswell as a sound. Like a truck engine stuck in my head revving. I do have a hissing sound.. ish, I do have bad posture and always have head bent down, and I do have sinus issues. I have always wondered if the sinusitis is related to the revving feeling.

 

I had also sinusitis when my ETD and tinnitus started one year ago. Then I had turbinoplastic and sinus surgery but I still have hissing and low drone

 

Ah, I'm so sorry... so probably it isn't linked to the sinus issues then. Hmmmm it's so weird though isn't it, as it behaves so differently to other tinnitus sounds and is almost like a feeling rather than a sound.

Thanks for letting me know though and all the best to you and everyone

 

For some reason I didn't read this post.

I certainly have forward head posture, static hissing and sporadically clogged ears. Also - I work on a MacBook 8 hours per day. I should probably connect an external screen so I look a bit "higher" than just down at my MacBook the whole time.

Usual disclaimer: 99% sure my low drone is the result of acoustic trauma, but like I said and the research shows > acoustic trauma can also throw muscles into spasm > tucking my chin sometimes can totally eliminate the drone (unless when it is on at full force, then nothing turns it off).

Makes me wonder if I should be working on my MacBook in a chin-tucked position.

 

Coincidentally (but not really as I've seen probably everything online pertaining to drone tinnitus) I did already see that video, but to be honest, I don't even dare to dream that what I have is actually a muscle issue and not a neurological issue. But who knows - this thing is so complex, it might be a cocktail of all kinds of things combined.

How long did it take before you saw benefit from the AC-11 and at what dosage?