How Do You Know For Certain It’s Meniere’s?

Since there is no scan, blood test or physical evidence that what I’ve been diagnosed with is actually Meniere’s, how do I know this diagnosis is correct? Let me back up a moment...this journey started, for me, about 15 years ago. I had a sudden attack of vertigo that lasted a few hours. I had no issue whatsoever with my ears, no fullness, no tinnitus, nothing. Fast forward about five or six years later, I’ve had two or three times where I’ve had tinnitus, no vertigo or dizziness of any kind. I’ve had two or three times that I’ve had dizziness, but no ear issues. I’ve seen an ENT a couple of times, they did a hearing test when the tinnitus was in full force and of course, there showed some hearing loss. The second test I had a couple of years later showed my hearing had improved. A few weeks ago I had a dizzy spell that lasted about an hour. I did the Epley maneuver and it seemed to go away. Then came the tinnitus that sounded like a machine continually running. That’s when I had the hearing test and again, of course, it showed hearing loss. Duh...if it sounds like an ocean roaring in your ear, of course you won’t be able to hear well. Anyway, the off balance feeling has stayed with me ever since...not dizzy or anything. The ENT right away said “classic symptoms! You have Meniere’s disease, nothing you can do but go on a low salt diet. Here take these meds (steroid, diuretic and Meclizine) and come back and see me in a month”.

So again I ask the question, how do you know with certainty that it’s Meniere’s? Should I think about seeing a neurologist, have an MRI, or suck it up and live with this diagnosis...whether or not it is an accurate diagnoses. I just don’t know if this is my anxiety talking and I don’t want to face a life of continually feeling off balance or do I have a legitimate question here?

 

Zotjen - the hearing loss was in low tones, however, it was only during the time os tinnitus. Once the tinnitus cleared, my hearing was back to normal. I did set myself up to see a neurologist. Unfortunately, I can’t get in until July, so I’ll have to wait for some answers. Thank you for taking the time to respond.

 

Well there’s a fun thought.

 

Thanks for this post...it kind of puts everything all in one place. I am currently doing most of what you are suggesting with moderate improvement. I see a chiropractor regularly, seeing a physiological dentist (TMD), and have an appointment set up for the first part of July with a neurologist. I also have scripts to have my blood tested for candida, lyme, and herpes. Currently taking l lysine, b complex, along with a boat load of other supplements. On a low histamine, low sodium diet and drink tons of water. My husband thinks I’m nuts for doing all of this and doesn’t know why I don’t just take the diuretic and Meclizine the ENT prescribed. I am also doing balance exercises to help me from tipping over.

Again, thank you for posting this...it’s quite informative.

 

Here is an update to my journey...Still seeing a chiropractor, but feel she is doing little for my situation. She adjusts my entire body, but I don’t think it’s doing much. I wasted time and money seeing the physiological dentist. He did a complete head scan, sleep study and attached electrodes to my face and did a muscle reading. I told him why I was coming to see him and that there was someone else I knew who had been diagnosed with Meniere’s and through a mouth orthotic, she had significant relief. $1,000 later, he said “ I can help you with those headaches and can help with your mouth pain”. Seriously!! Why are some in the medical/dental community so dense! I will not darken that doorway again! Then I was supposed to have an appointment next week with a neurologist...I took others on here’s suggestion to rule anything more sinister going on. I set this appointment up almost three months ago and this was the soonest I could get in. The hospital he is associated with called to let me know that he was not in my network and I would have to pay $500 in order to hold my appointment. After spending a half a day between my insurance company and the doctor’s office, I finally had to cancel that appointment. Ugh! I have set myself up with another neurologist who specializes in dizziness, but again can’t get in until the middle of August. I triple checked to be sure this guy is in network. I am also talking with an ophthalmologist who specializes in binocular vision dysfunction. I seem to have all of the symptoms (which weirdly are similar to Meniere’s). They are checking to be sure my insurance will cover, at least, some of the expense. I am continuing to take my B5/B6, lysine, olive leaf extract along with exercising daily, eating a low sodium diet and eating as clean as I can without driving myself batty. I drink no alcohol or caffeine (cut caffeine out a long time ago as it causes too much jitteriness). All in all I feel pretty good. I still have tinnitus, but it’s not all that bad. I seem to have more of a problem with “dizziness” (and I quote it because it’s not like the room spins, it’s more of a head buzzing, if that makes sense) when I wear my glasses. This is why I am starting to think this may have more to do with my eyes than my ears. I have only had vertigo once about 10-12 years ago with no issues with my ears. Other times I have had ear issues, with no dizziness. A couple of times the dizziness, again nothing with my ears. It was only 3-4 months ago when an ENT diagnosed me with Meniere’s that the two collided. He gave me a hearing test and immediately said “classic Meniere’s, nothing you can do but take these prescriptions and eat a low sodium diet”. Yeah, that’s why I’ve been on this journey. I felt he was too quick to diagnose and was very little help. I apologize for this long post, but wanted to document everything.