Meniere's Disease Support Group
Meniere's disease is a balance disorder of the inner ear. The symptoms of Meniere's are variable; not all sufferers experience the same symptoms. However, "classic Meniere's" is considered to comprise the following four symptoms: Periodic episodes of rotary vertigo, hearing loss, tinnitus, and a sensation of fullness or pressure in one or both ears.
Just curious what everyone has identified as their triggers. Being newly diagnosed I am still trying to figure it out, and I can't seem to find much info online that lists all the triggers people could have.
Flying is definitely a huge one for me, I used to fly every other week for work and now cannot fly at all anymore. It would start when the plane started to descend and last for days afterwards.
Stress/emotional upset- when my grandma died and when my mom had a health scare I found I had issues with my symptoms.
Eating dairy/MSG/and anything "unnatural", I eat a whole foods diet now and avoid a lot of foods that seem to cause me issues. This really only seems to affect the diarrhea component of it. (When I get dizzy I also get a lot of vomiting and diarrhea)
Most of my attacks come with no obvious trigger though.
Flying is definitely a huge one for me, I used to fly every other week for work and now cannot fly at all anymore. It would start when the plane started to descend and last for days afterwards.
Stress/emotional upset- when my grandma died and when my mom had a health scare I found I had issues with my symptoms.
Eating dairy/MSG/and anything "unnatural", I eat a whole foods diet now and avoid a lot of foods that seem to cause me issues. This really only seems to affect the diarrhea component of it. (When I get dizzy I also get a lot of vomiting and diarrhea)
Most of my attacks come with no obvious trigger though.
C=CAFFEIN
A=ALCOHOL
T=TOBACCO
S=SALT
I consider 2 different things "attacks": 1. Random weird sounds, feelings, deafness, etc that suddenly comes on and can last seconds to hours. 2. My usual hearing problems have progressed to such a degree that it triggers a panic attack, in which case the only thing that helps me is quiet and a very calm environment, less total sensory input. I've never found anything to prevent #1 and excess exposure to harmful environments or sounds causes #2.
I'm sensitive to barometric pressure and heights, too. I'm very sensitive to weather changes. I don't fly commercially a lot, but my girlfriend is a private pilot and flying in a little Cessna means hours (or a day) of recovery. Pressure changes and the plane often cause migraines.
The worst sound for me is the deep rumble of a motor/engine. Sometimes it's so low that it's almost inaudible. Even a few minutes with the right low frequency hum can give me a migraine and ramp my hyperacusis into full gear. (Yeah... Cessna engines are not fun...)
High pitched frequencies are also bad like my daughters' voices and metal-on-metal.
Loud or sudden sounds. Putting dishes away is very hard for me cause the sounds are high pitched and sharp. Though even low sudden sounds are bad. Dropping a small box on the floor will make me cringe. High fives and clapping are bad.
Excess background noise. I have trouble tuning out background noises. The volume doesn't have to be very high to be a problem. The more environmental sounds there are, the worst I handle it. A houseful of happy people talking and moving about doing things (aka making noises), with fans running can send me quickly to panic level.
Sounds need to be offset - They need to be louder on my left than right. Even by a slight bit. Talking (even whispering) into my right ear might make me scream. If I'm talking face-to-face with somebody, generally my head is just slightly turned so they're a bit more on my left.
The smaller the room, the worse it is. Cars are particularly bad, especially if I'm driving with a passenger (both a small space and sound on my right). This is another place where pressure is an issue - I need control of car windows. How I need the windows may differ minute by minute.
Phones are very bad. I've developed a serious aversion to talking on the phone. Not only the pain, but the auditory processing problem gets very bad.
The worst the exposure, the less capable I become of processing auditory input. I can see somebody talking to me, but damned if I have any clue what those words are. All I hear are the adults in the old Charlie Brown cartoons. That problem can last for hours after the exposure is gone.
In general, I get feelings about situations, sounds, pressures that will hurt me. I trust my gut. Some things just don't make sense to me, they break the normal patterns. It doesn't help that my hearing is so variable either. But it's really good about telling me what it likes and doesn't like. I'm not one to question the wisdom of my ears!
If I go much higher than 1000mg of sodium a day or even just a "higher than average" meal seems to create ear fullness. So, cutting back during the day so I can have 700-800mg of sodium at one sitting.....wont' work for me.
stress and lack of sleep
Also eliminate CATS just to try and stay well
buzz". I was one of those whose attacks were triggered by my cycle. For others out there with this problem watch out for menopause it really flares up the MD. My current triggers are lack of sleep, barometric pressure changes. big spaces with bright fluorescent lights. I work in a hospital so lights and cold termperatures will often trigger an attack. I am bothered by constant humming or roaring sounds like fans and machinery I cant really hear dialogue on the tv so I read the captions now.
Kerry
When I fly I have found great help with wearing foam pads in my ears for the entire flight with headphones over them listening to music or an audiobook.
When I was first diagnosed the one thing that helped me most was the Books by Menieres Man. They are very well written and the most informative source on Menieres Disease I have found.
You will be surprised when talking to ENT's that many have no clue of the full range of effects that come with MD and can wreak havoc into you health, life and relationships. Be well listen to your body and find what works best for you. In the beginning I did find some help from acupuncture.
Two weeks ago I went to Germany and received treatment from the same medical group ( Dr Wehling and Dr. Hartmann) that treated Dana Whites Menieres and have my fingers crossed I will have an outcome like his. The treatment includes the use of a biologic made from the anti inflammatory properties found in your own blood which is injected to fight the inflammation related to MD.
So like most MD sufferers we are all trying to find what works individually for us . Be well Judy