Hi all - I have been to four ENT's in the last three months. Two and half years ago I woke up with my left ear plugged. After seeing my GP who cleaned my ears, it wasn't better so I went to ENT. He said either Sudden Sensineural Hearing Loss or Menieres. I had documented low frequency hearing loss on the hearing test but no dizziness. I was prescribed a month of prednisone and with 24 hours of the first prednisone dose my ear cleared and my hearing returned. Never gave it another thought and learned to live with the resulting tinnitus. Except the same thing happened in August of this year 2015. Woke with plugged left ear and low frequency hearing loss. The ENT said it was now Menieres and would not give me prednisone, told me to do low salt, avoid pizza and learn to live with it. Second ENT gave me prednisone and again it cleared up. Five weeks later however the same symptoms returned and since September I've had five episodes of low frequency hearing loss, aural fullness and lots of tinnitus. I've been religiously low salt but I keep having episodes. Saw a third ENT at Mass Eye and Ear and he said "unstable ear" because i would need to have dizziness to have Menieres. He said next time it happened test my hearing with an app and if continued to decline to call and we might try steriods. Saw fourth ENT recommended by one at Mass Eye and Ear (closer to home) and he thinks I have Autoimmune Inner Ear Disease and doesn't like steriod use. He did an MRI and it was fine. He wants to test me for allergies next week. So - I'm having an attack now - low frequency and upper frequency loss and aural fullness - still (thankfully) no dizziness. I feel like time is of the essense to figure this out but I am confused. I've read it could be viral and I live near Worcester and could go see Dr. Graceck but since i don't have dizziness, would acyclovir even possibly help? I've read it could be caused by injury to the upper cervical spine and going to a cervical spine specialist could help. I've been tested by my GP for all sorts of autoimmune markers and everthing comes back ok. I'm 56 years old, mom of two kids and other than this, life has been pretty good to me so I hate to be whinning about this but I'm basically freaking out. I am so glad I'm not experiencing dizziness so I hate to sound like I'm complaining but I alternate between being on the verge of tears and pulling it together and saying to myself - it could all be so much worse. But I'm petrified of lossing my hearing. Does anyone out there have a diagnosis of Autoimmune Inner Ear Disease? And does everyone ultimately go completely deaf? Could this be Menieres that has yet to manifest with dizziness? It seems like these symptoms could have multiple causes and some people end up getting a doctor whose approach helps while others go from doctor to doctor in search of what will work. Any advice would be appreciated from those of you who are more experienced. I am just so confused and going down the rabbit hole of internet research isn't helping. I just feel like the clock is ticking and I need to find help before my hearing is gone. Thanks for reading. Susan
I would go see Gacek. Antivirals certainly can't hurt and they might end this before it gets bad. I also had hearing loss years before vertigo. Would have liked to avoid a lot of that.
I agree with Scott, but usually if prednisone helps it usually points to Autoimmune Inner Ear Disease
Hi Susan56, Your situation sounds identical to mine. My right ear was congested for several years before my 1st vertigo attack. I had the one attack and then did not have another one for a couple of years. During that time, the congestion continued, constant fullness, continued hearing loss and in the past 2+ years, vertigo and tinnitus. I wasn't "diagnosed" until 4 years after my 1st vertigo episode. And probably close to 8 years after I started to notice the congestion. You are fortunate someone diagnosed you at the "congestion" stage. I would definitely go see Dr. Gacek, especially since you live in the area. In my opinion, I wouldn't risk letting it progress. I feel there is nothing to lose. And I too am scared that I will go deaf. I recently had vestibular testing done and the doctor confirmed there was some fluid in my "good" ear. I am so afraid that it will spread to my good ear and then I will have no hearing. Just my thoughts.....please keep us posted. Take care!
Hi all - thank you all for sharing your experiences. I guess I have some work to do exploring the multiple causes/treatments. So far I think I need to look into: allergy connection - environmental allergy testing scheduled for this week upper cervical spine treatment - first appointment scheduled this week antiviral treatment - will call to make appointment with Dr. Gacek get checked for lyme disease - will ask GP find out when, if its autoimmune inner ear disease, do we try a steriod course? ENT instead of oral steriods - intratympanic steroids? ENT wisdom tooth extraction - oral surgeon Am I missing anything I should be checking into? Reading this message board and hearing from you all gives me some hope that the worst case scenario may not happen. Thank you all so much. Susan
I have had mm for about 1.5 yrs that I am aware of. Mine started with just the fullness and hearing loss. I didn't get the ringing (tinnitus,), for awhile. Then dizziness started about 8 months later, gp had no idea what to do and finally sent me to ent. My ent did prednisone, I hated it and didn't work for me. Finally put my on low sodium, no caffeine, no alcohol. Sodium seems to make some difference, cafine and alcohol dont seem to make much of a difference. I am still doing JOH regime. The dizzy is just now starting to come back and will have to see ent again. Hoping for antiviral, and diuretic. Everyone one of us is different and even though our symtoms are very similar, our treatment may be dfferent. Keep pushing forward for what you need, even if it means going ot of town. good luck!
Prednisone helps with many types of inflammation. Rule out inflammation of the inner ear caused by a misaligned cervical spine (neck). Also rule out TMJD a 360 degree x ray of the jaw can do this. Nucca.org for upper cervical info.
Prednisone is an oral steroid. There are steroids administered though inter tympanic injection but I'm not sure what steroid it is. With injections you can avoid some of the side effects of prednisone, but it does involve puncturing the ear drums.