Hi Guys. LONG POST AHEAD. PLEASE READ.
Hope all is well in these crazy times.
It's lockdown madness in Victoria Australia, incompetence abounds in our Government here.
Anyway COVID-19 aside, I've had a rough couple of months.
I've self diagnosed myself with Endolymphatic Hydrops, potentially triggered by an IVF cycle (hormonal).
It started with myoclonus in my right middle ear, which eventually became worse and I had a sudden low frequency hearing loss, not noticeable except for a sudden onset of diplacusis, low frequency roaring tinnitus heard over everything, shocking reactive tinnitus/hyperacusis, ear fullness so bad my ear felt like it would burst and feeling like I had a swimming pool in my ears. Confirmed on a hearing test I've lost 45db at 250 and 500 and 35 dB at 1000.
Three ENTs - one diagnosed SSNHL, one said a transient hormonal shift and the other Meniere's.
I start a low salt diet and already had myself on high dose Prednisolone.
Death is looking pretty appealing at this point.
Agony to be around my kids as every noise has a robotic echo attached.
I think I need diuretics at this point as I'm thinking Meniere's without the vestibular symptoms.
No damn ENT will prescribe, so go to emergency and beg the doctor in charge for a diuretic. He says it is unlikely to work, but prescribes anyway. 24 hours later, roaring tinnitus gone, no diplacusis and no reactive tinnitus. Still have on/off myoclonus, but still better than I was! Hearing test confirms all low frequencies are back to normal.
Anyway, I still feel like my right ear is wet, there is fluid building up and one night, my left ear feels full and wet and I just know I have bilateral Endolymphatic Hydrops / Meniere's (?).
Anyway, lots of research - bilateral Meniere's almost always auto immune. Must try something to settle my immune system.
My dear friend
@DebInAustralia suggests LDN (low dose naltrexone). She has saved my life at this point, I'm about to discover this is my magic pill.
I find a doctor to prescribe this, not easy. I start at 1mg taken at night.
Within three days, I can tell the 'wet' feeling and the minor ear fullness is improving.
5 days in, the ears are completely normal. No symptoms at all. It continues this way at a month and counting now.
What's more, I have no tinnitus at all, my head hissing is gone, barely audible in the quiet.
I just wanted to share my story and what helped me with not only my Hydrops, but my regular hissing tinnitus.
Might be something to add to the list of potential treatments.