Weird Ear Symptoms (MEM/TTTS/Diplacusis): Clogged and Vibration Sensation

Hi Everyone,

My normal tinnitus is tracking along ok.

Over that last weeks, I’ve had some very strange symptoms.
I’ve been waking up with a clogged sensation in my ear then there is a vibrating sensation that gets worse as I move or lean my head forward.
I’ve had a head cold for a little while.
I can open my Eustachian Tubes but doesn’t stop the clogged feeling.
I’ve been sleeping sitting up as the symptoms start again after I’ve been laying for sleep. This seems to help and the symptoms are pretty much gone for most of the day.
I lay with my son for 1 hour last night and fell asleep.

Even though I had no symptoms when I lay down, they were back with a vengeance when I woke up.
Only other possible issue is that I had a minor surgical procedure and was given Propofol for sedation. The symptoms started two days after that. Possibly a coincidence.

Anyway, I’m sure something is setting either the eardrum or my middle ear muscles off... could it just be fluid?

Finishing a course of antibiotics from the doctor I saw about it but I don’t think that’s the problem.

 

Hi All,

I've been managing my high pitch tinnitus fine for the last 4 years.

The following symptoms have come on progressively over the last 4 weeks -

- Fluttering sensation in ear turning to vibration. This is definitely a sensation as well as a sound - I suspect Middle Ear Myoclonus / Tonic Tensor Tympani Syndrome
- Feeling of fluid in ear, crawling sensation around the outer ear
- Aural fullness, but can pop ear. The fullness subsides as the vibration does
- Diplacusis - when my children (especially) speak, I get a tone like a recorder (which is probably an echo) of the sound

All these symptoms are in my right ear only and seem to have progressively changed, in that the flutter is now a vibration and appears to be with me all the time.

Leading up to this, I had a head cold.

Standard hearing test was normal and no change from 4 years ago.

Two days prior to this I had a minor surgical procedure and was given a light sedation. I'd also received hormone treatment as I was undergoing an IVF cycle (unsuccessful, which is probably a good thing right now).

I've seen a GP who initially said I had fluid behind my eardrum but that appears to have resolved.
Because I suspect I have MEM, I have been begging to try a muscle relaxant. Found a GP who would prescribe Baclofen. Benzos appear to help and calm the vibration, I’m not sure about the Baclofen.

I have a regular ENT appointment on Wednesday, but found an otoneurologist who's treated MEM before and I have just sent off my information and referral for an appointment.

@Greg Sacramento - do you have any ideas here? It's become really distressing and I'm afraid.

If anyone can shed some light, it would be greatly appreciated.

Ironically, the only symptom to have improved is my regular tinnitus. I can literally only hear it with earplugs in when I'm in a quiet room. It's never responded to benzos, so I believe something has changed there to, at least for the better.

I would gladly take my regular tinnitus back in a heartbeat. Better the devil you know.

 

Oh dear. Looks like a complicated case.

To me it seems there is something physical going on, I'm hoping the ENT and/or otoneurologist is able to find out the issue.

I think the ENT will be able to see inside your ear more thoroughly than the GP.

 

Thank you for your reply.
Yes, I agree. Something physical is going on in my middle ear is my suspicion. Probably the worst part is the sensations more so than the low frequency sound, which is really not that loud.
Low sounds are distorted by the vibration I think.

 

@Samantha R

Did you receive estrogen and progestin HRT therapy? Not sure what you mean by hormone treatment! Estrogen alone in the cochlea may not significantly involve the hearing system. If so, and with that - cold - ear fluids, problem could be inner ear potassium ionic balances, but I doubt this.

Aldosterone can help tinnitus. Did you receive this?

With sedation - you and I talked about this probably two years ago. I had asked an anesthesiologist and he send a link which I posted to you. Don't think that's your problem either.

I may be just ear muscles, - fluids and a cold - which we discussed about two week ago.

 

Thank you. I should have mentioned the IVF procedure but didn't think it was a connection.
I received Follicle Stimulating Hormone (Gonal-F, to develop multiple eggs for collection) 450iu for 10 days, Orgalutran (Gonadotropin releasing hormone antagonist, prevents ovulation in the IVF cycle) and then 500iu Pregnyl (human chorionic gonadotrophin).
Then progesterone is given post embryo transfer.
So no Estrogen therapy, though I'm not sure the effect of FSH and GHA antagonists on natural estrogen production.
450iu is a high dose of FSH, but required to due to my age (42).
I received 300iu of FSH in my previous IVF cycle at 37. No adverse affects to the ear post this procedure at the time.

No, I did not receive Aldosterone.

I previously supplemented with progesterone at the same dosages as this stimulated IVF cycle, last year after two frozen embryo transfers (no other hormonal support received) with no change to my hearing or anything else.

What do you think about my MEM theory? There's an inner voice telling me this is potentially significant and could be my diagnosis?
Particularly because of the fluttering / vibration sensations.
I also connect hormones now to maybe being a trigger for a middle ear episode. I experienced stop / start fluttering and vibrations 4 weeks post partum with the twins for a week. I didn't think anything of it at the time as it resolved, then I developed the high pitched tinnitus.

Yes, I do remember us talking about hormones and sedation (namely epidural/spinal block in c-section procedures if I remember correctly?). I'll search for that.

Thank you as always.

 

@Samantha R
Past discussion Aug, 12 2018

Other authors have suggested that this is due to cochlear patency, such that the pressure change cannot be transmitted to the peri lymph unless the cochlear aqueduct is particularly patent [8,9]. In fact, one study specifically excluded patients who did not present with a patent cochlear aqueduct when investigating the correlation between tympanic membrane displacement and hearing loss [10].

In reference to hormone associated procedures - studies point to Presbycusis and cochlear patency and this has been connected to the tympanic membrane, but is very very rare. They also discuss Perilymph involvement which is extracellular fluid within the inner ear. This is found within the scala tympani and scala vestibuli of the cochlea.

I remember the anesthesiologist asking me if you also ever had hormone therapy. He mentioned, a possible enlargement of the cochlear aqueduct. He wanted to know (2018) if you had ear thumping and I said no. From what he said then - everything will improve to be very manageable.

Samantha, give it a little more time.

 

@Samantha R I'm experiencing something similar - ear fullness, fluttering, vibration, and very low bass sound of tinnitus, for two weeks. I can feel/hear it almost all day, it is not maskable. But it stops if I plug my ear with cotton wool or finger. I'm also worried about it.
@Greg Sacramento Please, help. Maybe, you have an idea what it could be, if it stops then i plug my ear? Should I be worried?

 

@Greg Sacramento thank you for your words of reassurance. I'm not a patient person, particularly with my health.
Your kindness and help is much appreciated. Thank you.

@lucy_snow please tell me have you had any recent incidents, like an acoustic trauma?
I have been researching this as much as I can over the last few weeks, along with my dear friend @DebInAustralia.
Greg also believes my middle ear muscles are spasming.
I've joined two FaceBook groups - one called Tonic Tensor Tympani Support and the other Middle Ear Myoclonus.
Both have sufferers there who experience similar symptoms to us.
I've experienced vibratory tinnitus previously (4 years ago), that went after a week.
I believe a lot of people experiencing low frequency tinnitus are being "misdiagnosed" as just having tinnitus when in fact their middle ear muscles are in constant spasm. I'm sure of this.
It's because we are describing the sound, not the sensation.
There is every chance that this will go. You could up your magnesium and potassium intake.
Mine is changing with movement, and is also less noticeable if my ears are plugged.
I'm trying prescription muscle relaxants, they can take a couple of weeks to work, if at all, so I'll have to be patient.
I have an ENT consult today also. It is with an ENT who practices with an ENT who has performed surgery on the middle ear to cut the stapedius muscle and the tensor tympani muscle in patients with middle ear mycclonus. I opted to see him, as the ENT who has performed the surgery was unavailable until 4th August. I figured if he practices with her (he's actually her brother), then he'd be familiar with the condition.
Keep me posted, and stay in touch and I will do the same. Perhaps join the FB group and post in there too. You'll receive great info, and one member has compiled a list of ENTs who have performed surgery for MEM.

 

It appears that your tinnitus was caused from a viral ear infection. At this point, turmeric may help. Don't take magnesium and other vitamins at the exact same time when taking turmeric. Space it out by a couple of hours. Magnesium use should be spaced out as well. 1/3 tablet three time daily. NAC may help as well - one tablet a day. Drink a fair amount of water. Lucy, you should see improvement.

https://dealwithtinnitus.com/how-to-treat-tinnitus-caused-by-viral-infections

Muscular tinnitus is often present with physical tinnitus where there may be some hearing loss. Muscles not in place.
With TMJ, pain is often caused by muscle strain from opening mouth too wide for too long. Muscle strain happens a lot easier when there's infection.

Read that for some, plugging ears can decrease ear muscle and sinus pressure by lowering blood pressure just a tiny bit. Ears plug placement and removal needs to be done correctly if there's ear fullness and/or any muscle or eardrum trauma. Muscles relaxants can lower blood pressure if not from a vascular cause. Benzos do not lower blood pressure.

 

thank you Greg. I had a repeat audiogram today and I have indeed lost hearing in the low frequencies. I’ve dropped to a 45db loss at 250hz and 40db at 500hz, 20db at 750hz. Somewhere between Wednesday last week and today.
I suspect around Saturday when I developed the diplacusis.
I still think this vibration is muscular, but there may be an element of low frequency tinnitus there too?
I’m not in a good way. I am on prednisolone.
@Greg Sacramento

 

@Samantha R
I did more research and it seems that the anesthesiologist is correct - post above #7.
Epidural/spinal block or hormone therapy can off balance Perilymph extracellular fluid balance between ears and cause vibration of ear muscles. Complicated process reactions - including ear muscles which I don't completely understand, but I will take research at word. Noted is a cause of diplacusis. Potassium and prednisone is used to resolve hearing loss and Perilymph ion imbalance.

 

thank you @Greg Sacramento. This makes sense to me, especially given the timing of the onset of the symptoms.
I saw the ENT today who took one look at my referral and a quick look at my Audiogram and told me I have Meniere’s given I’ve got low frequency hearing loss. I’ve experienced no vertigo or dizziness. Maybe that’s to come?
So I am on prednisolone in case it’s SSNHL.
I’m wondering if my symptoms this past month have been indicative of Ménière’s?
I don’t think so, but I don’t know.

 

@Samantha R

Meniere's did come to mind after seeing your audiogram and with consideration of possible improper ear drainage and viral infection. Since you were seeing the ENT after your audiogram, consideration for Meniere's would be made even without other testing and much observation for early stage. It may be best to follow the ENTs Meniere's protocol.

You have not expressed many of the symptoms for early stage of Meniere's, except with ears.

The anesthesiologist back in August 2018, highly expected an enlargement of the cochlear aqueduct. Now with very possible Perilymph involvement within the inner ear, the scala tympani and scala vestibuli of the cochlea, it's very possible that you do have enlargement of the cochlear aqueduct. If so, prednisone and muscle relaxants should greatly help. Studies express that ENTs are not well educated with this subject matter and they need to be.

Coronavirus disease side effects - who's knows - read a lot of case developments and more are being discovered daily.

 

Thanks Greg. I am following the low
Salt diet (haven’t eaten a thing today).
The MEM makes the low frequency tinnitus worse. The ENT seems to think all will be fine in a couple of days. the diplacusis is debilitating but I might need to see an audiologist for that, maybe a hearing aid will help.
I’ve just taken a clonazepam as it’s be a stressful
day and the ear vibrating is at it’s worse.
ENT thinks will stop when the fluid drains.
I still think too many other causative factors
to pin this on Meniere’s...any specific muscle relaxants other than benzos as I have taken too many of those lately.

 

Recently has this from a head cold, hopefully once it's cleared you'll be back to normal

 

@Greg Sacramento
I went to ENT yesterday, she suggested to take a short (one week's) course of prednisone regarding the ear fluttering and vibration. She had never heard of TTTS though. She just said that prednisone is the only option that could help and a week of it should not do any harm.
Do you think it's worth to try? I'm really struggling at the moment.
Thank you very much for your previous advice and for taking your time to answer.

@Samantha R I'm so sorry to hear about the hearing loss and all your struggles. I hope it will settle down for us.

 

@lucy_snow

I would try it once again for this: One often does not know if there's a little ear or jaw inflammation going on causing vibrations.

Other thoughts on stuff to do from your posting history.
Fluttering and Vibrations:

Magnesium and calcium may help these problems: Consider thoughts to you in post #10 above. Drink a fair amount of water during the day, as lack of fluids can definitely cause ear fluttering as well as lack of magnesium. Magnesium will also help when one has fluttering (secondary reaction) from sharp sounds such as a spoon hitting a dish.

I won't say to take a vitamin tablet with your magnesium and NAC every day, but this may help with damage control if you need to go the dentist or be in a place where you can't use ear protection. A vitamin tablet with an added whole magnesium tablet should be taken one hour before visiting a dentist or getting a MRI.

I would use a surgical hair net with placement over ears when running home air conditioning, heater or fan. You can buy a bag online for just a few dollars. Hair nets will also stop dust from going into ears.

I would avoid a powerful electrical fan where position is sending air directly into your ears. This can cause the eardrum to react and muscles can invert outwards causing fluttering and vibrations. Muscles sometimes don't revert back into normal position quickly.

At some point I would get complete blood work - CBC. Not just for infection, but to check vitamin levels and to check values that may associate to a host of other things.

It's always a good idea to monitor blood pressure with changing tinnitus levels and with having any ear or head sounds other than buzzing.

I would also try using two pillows for a few hours to see if either fluids or blood pressure has any involvement.

Eating small meals that are low in carbohydrates and drinking a fair amount of water often during the day will help control chronic fatigue.

 

That’s how I feel.

Drone I can deal with but not this new high pitch sound which took me back to square one.

My drone started during a bad head cold.

I’m sorry to hear of your new trouble but hopefully it gets better.

 

Sorry to hear Valeri.
I’ve been told I have SSNHL, Meniere’s Disease, stapedial myoclonus and now (this will shock you) anxiety....
I refuse to sit back and blame everything on
anxiety and take back control of this.

 

@Samantha R Are you feeling any better?

 

no. There is something going on with my ear and the tinnitus is doing odd things.
I’m starting a diuretic today.

How are you?

 

@Samantha R, I hope you don't mind if I join in the conversation, even if I can't really offer anything, I'm trying to search for what caused my weird tinnitus.

I have a "regular", UHF, bilateral tinnitus, which could have been caused by a myriad of things, but most likely by cumulative noise exposure (earbuds.)

The weirder one and which is a bit like yours: Since 2016, every year (except for 2018) for 1-3 weeks, I have had a very low frequency, washing machine type, buzzing, vibrating sound, unilateral, left ear, loud, and I had thumping in my ear too. It stopped when I plugged my ear, when I talked or when I covered my ear really hard creating a vacuum. It must have been something physical, but I visited a bunch of ENTs, but the moment I mentioned that I hear sounds, they said that this is tinnitus, nothing can be done, get used to it.

An audiogram was done back in October, it was not bad, but my tympanometry was shallow and the ART was not the best. In February, an other pure tone hearing test was done, which showed ABG and as far as I'm concerned significant worsening in the lower frequencies. Not horrible, but concerning. I asked about Meniere's, but because I never had vertigo, I almost got laughed at the face. ENTs doesn't think it's otosclerosis either, because the ABG is not big enough, no Carhart notch either. I asked about hydrops as well. My left ear always has been the weaker one. I used to have ETD in it, but resolved. In August I struggled with some kind of ear infection, both ears were itchy, a bit in pain, and leaking fluids, but doctors said that no way that it would cause tinnitus 1,5 month later.

I don't remember this about the previous bouts of tinnitus, but this time it stopped the exact moment I got my period. Can be a coincidence though.

I also had and still has the feeling that fluid or something is moving in my ear. And it also hurts from time to time. It's hard to explain, but it's like something is under my skin around the tragus. Like a slushie being pushed around.

When COVID-19 lets me, I will go to an other ENT, although none of them I visited were much of help. If they have any idea, I will let you know.

 

That’s been established (at least in case of tinnitus) as a familiar and easy cop out for clueless doctors!

Sam if I remember correctly you used to have low drone at the beginning, is what you have now different?
Is it a sound or sensation?

 

I have similar symptoms pretty much every day 2 months now. Constant ear pressure, moving facial tightness, head vibration and pressure, along with tinnitus. Not sure whether to see a neurologist or ENT.

 

Yes

yes I had a low drone and it went away.
It started with a flutter so I know it was myoclonus. That happened 4 weeks after the birth of my twins.

This episode began after finishing an IVF cycle, but I now had confirmed low frequency loss.
I find it hard to believe that it’s a coincidence that all of a sudden I have Meniere’s?
I have sought out a Meniere’s specialist but who knows how long to get in to see her.

 

You should seek out an otoneurologist and get a hearing test ASAP.

 

You are fortunate this has stopped for you.
Unfortunately , my symptoms are persisting. But they change.
I think the vibrations and thumping
are middle ear myoclonus. Never mention sounds alone when talking about myoclonus, you must mention sensations. Sounds will always be dismissed as tinnitus.
How low is your low frequency loss? According to one ENT I saw, this was diagnostics of Meniere’s alone.
I have the fluid feeling, especially when standing up from bending down.
Cochlear hydrops could be, I need to do some more research to see if somehow myoclonus could be a symptom of Meniere’s and hydrops. Does the extra fluid somehow upset the middle ear muscles and they misbehave?

 

Unfortunately the biggest problem is lack of understanding when it comes to ear issues.
ENTs' knowledge rarely goes beyond putting grommets and referring you for MRI and hearing test.

@Samantha R when my drone started I read that it could be atypical Meniere’s or hydrops.
I saw 7 ENTs and not one mentioned that as a possibility.
I really hope you find something that helps you.

 

I know, I'm very grateful that right now the low buzzing is unnoticeable, but I'm dreading that it will come back, because it has. And that's pure torture. UHF tinnitus is ruining my life as well, but if I'm honest to myself, the washing machine noise when my ears and my whole head felt like they were vibrating was on an other level of suffering. I don't recall having the clogged sensation though.

The lowest in my left ear is 35 dB at 125Hz, 25 dB at 250 Hz. I'm 31.

I don't think that low freq hearing loss is enough to diagnose Meniere's alone though. I visited an otoneurologist, but they didn't think that without vertigo attacks, this could be Meniere's.
Of course, all my symptoms were blamed on anxiety.