MEM/TTTS/Diplacusis: Clogged and Vibration Sensation

[Samantha R]

Hi all,

I've been managing my high-pitched 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 I can pop my 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.

 

[ajc]

Oh dear. Looks like a complicated case.

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.

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.

 

[Samantha R]

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.

 

[Greg Sacramento]

@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.

The problem could be inner ear potassium ionic balances, but I doubt this.

Aldosterone can help tinnitus. Did you take it?

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

It may be just ear muscles - fluids and a cold - which we discussed about two weeks ago.

 

[Samantha R]

@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.

The problem could be inner ear potassium ionic balances, but I doubt this.

Aldosterone can help tinnitus. Did you take it?

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

It may be just ear muscles - fluids and a cold - which we discussed about two weeks ago.

Thank you. I should have mentioned the IVF procedure but didn't think there was a connection.

I received:

• Follicle Stimulating Hormone (Gonal-F, to develop multiple eggs for collection) 450 IU for 10 days
• Orgalutran (Gonadotropin releasing hormone antagonist, prevents ovulation in the IVF cycle)
• Pregnyl (human chorionic gonadotrophin) 500 IU
  
• Progesterone given post embryo transfer

So no estrogen therapy, though I'm not sure the effect of FSH and GHA antagonists on natural estrogen production.

450 IU 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]

An update for anyone who is interested:

• My low frequency hearing loss has completely recovered. Back to normal.
• The diplacusis is gone.
• The roaring wind tunnel tinnitus is gone.
• The myoclonus remains my only symptom.
• I'm still on Prednisolone but tapering now.
• I don't need HBOT anymore as the hearing loss has recovered.

I took diuretics in case I had fluid in the inner ear. Coincidence or not but the symptoms resolved on day two of the diuretic.

Not out of the woods, but much better.