One year since last attack. Here's what has worked.

Hi Everyone.

I've had a long and slow developing journey with Meniere's Disease, and am happy to report I've been attack free for a year. I wanted to share my symptoms, diagnoses, and regiments, in hopes of helping someone else.

SYMPTOMS (many, that is)
- A few times a year, starting around 2005, I would have a strange wind-like flutter in my left ear. It only lasted a couple seconds with no other side effects. Freaked me out, saw a doctor, and he said, it's probably just a nerve thing. No need to worry.

- I live in Northeast Ohio, and from 2012 to 2018, especially when spring was beginning to bloom, I noticed I would get very quick dizzy jolts. It felt like a ghost was giving me a little push without actually touching me. The effect ended very quickly, but freaked me out. Saw a doctor, nothing was determined. I started to notice that caffeine was perhaps a trigger. I would avoid caffeine around April to avoid these with decent effect. I don't know why this time of year was a factor. I do have hay fever allergies in the late summer, but spring was never a problem.

- In 2019 things started to get exceedingly weird. I am a musician and have spent many years as an audio engineer. I noticed when I phoned someone my left ear was hearing the phone ring in a lower tone than my right ear -- down three half steps. I didn't understand how this was possible, but my ears were absolutely hearing a different pitch from the same source. (Try this yourself by making a call and quickly moving the phone from right to left during the same ring.) Being an audio engineer I started experimenting. I found a tone generator on youtube that went from low frequencies to high. I put a headphone on each ear and moved it during each tone to see which frequencies were changing pitch. Mid voice-range frequencies were the problem areas. It was around 400 hertz. The high frequencies sounded very much the same in each ear, but I discovered that the low frequencies in my left ear were almost not being heard at all. As a musician, this hearing loss was heartbreaking. Saw my ENT, had another hearing test done, and both ears came out ABOVE average. I told the doctor that something is wrong with his hearing test explaining my own discoveries. He said low frequencies can't be reliably measured. Needless to say, I'm extremely disappointed by the scope of current hearing tests.

(A quick simple low frequency test I do is listening to my dog's heartbeat. If I put my head on her chest I hear perfectly with my right ear, but almost nothing with my left. Also if you're in a car that is normally idling you can put your hand over your ear and touch your elbow to the door you should hear a deep rumble. Try with both ears to see if it sounds the same. May not work with electric cars.)

- In early 2019 when I would use the phone on my left ear it sounded like I was talking to a robot. Things sounded fine in my right ear. So now I got robotic sounding phone voices. Great.

- Another thing that was related, but not quite the same, is I was hearing a harmonic in my left ear that was most noticeable when listening to music. It sounded like an out of tune female ghost was singing along in my left ear. Drove me crazy. Maybe my ear was frigging haunted.

- Then in May and June of 2019 my ear had that full feeling. It was ringing heavily off and on at about a 400 htz tone. I started having more serious dizzy spells. It felt like those earlier described shakes, but much more frequent, and with longer lasting affect. I was told by a nurse family member that my ear crystals could be out of place, so I started doing the Epley Maneuver. I'm not sure if that helped.

- I am a comic book creator by trade, and in June of 2019 I was set up at a local comic convention, and become extremely dizzy as the day went on. That led to nausea, then extreme nausea. I stumbled to the restroom and got violently sick like never before. I was unable to move any part of my body without getting sicker. This lasted over an hour. I managed to phone my wife. She arrived, I was taken on my first ambulance ride to a nearbye hospital. They gave me IV, anti-nausea meds. A couple hours later I went home. A few days later I felt great! My ears were not ringing. The weird distortion and ghosting was gone. Previous to the attack I had just eaten food from the taco truck, and assumed it was the word food poisoning of my life. I was joking that I ralphed out my ear ghost. Woo hoo!

- Over the next six weeks the ringing and dizzyness gradually came back. There was a day in August of 2019 when my left ear was ringing extremely loud. I became very dizzy and tried the Epley Maneuver, and within moments I had my second attack. This time I was at home. It felt identical to the first attack. The room was shaking back and forth as I got sicker and sicker. I told my wife not to call an ambulance this time. It lasted over an hour before it finally passed, but this time I wasn't clear as a bell when it ended. The light-headed feeling was lingering.

I saw my ENT, and he diagnosed me with Meniere's. I was relieved a bit to know what all this was about, but also pretty bummed about the next steps. In retrospect it's ridiculous to say now, but it was heavy comic convention season, and I had prepaid for booths in Atlanta, Toronto, New York, Pittsburgh, and I really didn't want to toss all those booth fees to the wind, and lose all that business.

Treatment
My ENT put me on a water pill, and told me to drink lots of water, and cut down on salt. The problem with that was my blood pressure is on the low side of normal, so taking a water pill, drinking more water, and reducing salt would all potentially lower my blood pressure to the point where I might be light-headed all the time for a completely different reason!

After three days I decided to stop taking the water pill, and focus on diet. I researched forums which thankfully led me here. I was very intrigued by bennyhill's The Cure for Meniere's Attacks thread. I've always been somewhat suspicious about vitamins, but figured it was worth a try. I also had read about Magnesium being potentially helpful, so I added that.

It took a couple months, but I did manage to attend all my comic cons, and the fog gradually faded. Most of the time I feel like my old self.

Diet
Any time I have to eat out I ALWAYS say no salt. If I forget to do that, my ear will probably be ringing the next day. Produce is key, but low sodium cereals, no-salt burgers with no-salt fries all can work for me. It's amazing how fast you can get used to unsalted Kettle Chips or nachos. It blows my mind how much salt I used to consume. Our whole family is eating much healthier as a result. I'm a social drinker, and do find the alcohol might also trigger the ringing. At dinner I can do a pasta with low sodium pasta sauce or something. It seems if I'm really good for two meals I can cheat on the third. Pay attention to sodium levels on everything you buy. Once salsa can be 15% of recommended sodium intake and another only 5%. The daily recommended sodium intake is probably too high for anyone with Meniere's. I'm probably doing 1/3 of that.

Get Out of Jail Quick Meal
This isn't scientific at all but it works for me. When my ear is ringing I double up on my water intake, and my go-to meal is a fresh organic kale salad with olive oil, balsamic vinegar, shredded carrots, avocado, dried cherries, diced no-salt almonds -- and this is the key if you can stand it -- fresh crushed uncooked garlic -- like two big cloves. There is a lot of strong flavor in this, but there's zero sodium as far as I can tell, and you are not wanting for salt at all. I also drink Kombucha. That has seemed to get me back on track time and again.

Daily Vitamins
B-6 100mg from a local health food store in Akron, Mustard Seed
Pantothenic Acid Vitamin B5 (125 mg) by Source Naturals (250mg broken in half)
Magnesium (400mg) with Vitamin B6 (25mg) by Solgar

I take no other supplements, and no water pills or medicine.

Quick Hearing Check
I'm ever-aware that when I had attacks in the past my ears were not right. I mentioned my DIY low frequency test earlier, but the one I do several times a day is just a simple rubbing my thumb and fingers back and forth close to each ear - one ear at a time. Try it. Does it produce an equally high crisp sound on both sides? If they are not the same it could be for a lot of reasons (wax build up etc), but for Meniere's it usually lets me know I need to get more serious about my diet again. (No substitute for seeing your ENT of course!)

Conclusions
The ringing has become unnoticeable much of the time. I do find naps are extremely helpful. It seems I take one or two a week.

I'm disappointed that both of the ENTs who I saw immediately wanted to put me on the water pill before giving diet a chance. I'm grateful to have found this forum. Grateful especially to bennyhill!

I had used my left ear for phone calls most of my life. I'm not saying there's any correlation, but I certainly will never put a cell phone up to my ears again.

It's been just over a year now since my last attack. I hope something in here can help you, and I absolutely sympathize with your pain and the struggle. It's nice to have this community. If you're looking for something to read check out my comics

Best wishes.

Ted

 

Hi Ledwards. Yes. I take all three in the morning before or after breakfast.

 

So sorry to hear about your bilateral Meniere's. I have had some neck and back pain through the years, which I I've read has been theorized as a cause.

One other thing about the head/ear pressure, is we live in an old house with uneven floors, so our bed seemed to tip down to the head position. When my ears felt really full I found it helped to swap head and feet positions so the head was elevated. It seemed to relieve some pressure.

Best wishes.

Ted

 

Hi Weeba.

I'm completely out of my element on amounts of B5 that are potentially problematic. I was going by what was suggested by Bennyhill in this forum. If you click that link I believe you'll find more detail about why 100mg is the optimal amount of B5.

I mentioned earlier that I've always been a bit suspicious about vitamins. However, it seems if I accidentally miss a couple days of the supplements the ringing creeps back up, so they must be doing something.

Ted

 

Sorry I this is the link I meant to post. The Cure for Menieres Attacks