Descriptions of symptoms by patients
For persons unfamiliar with Ménière's disease, these descriptions of symptoms make you realize how disruptive the disease can be.
Patient 1
Male, 3 year history of symptoms.
The worst symptom is the vertigo. In short, you feel like you go round and round then you throw up! However, it varies and I have had various manifestations. I can remember on several occasions where I would be sitting at a conference table in a meeting and the room would suddenly shift such that one end seemed "higher" than the other. In some cases I could work through it by squinting or finding something to focus on. In other cases I had to stop. The episodes generally passed within a few minutes. If they didn't generally Meclazine (antivert) would help.
Another manifestation is such that the "spins" would set in. If they were not too bad I could manage to walk to the water fountain to take a pill. Walking was generally difficult and I would use the wall to steady myself. During these times as I would take a step I would be unsure where the floor was. It always seemed quite a bit farther away than I thought.
Severe episodes would have the room start by shifting then begin spinning in a right to left direction. Trying to focus on an object sometimes helped. Generally the only thing to do was to try and sit or lay down in a quiet place and wait for it to pass. Meclazine would seem to help providing I got it down before the vomiting set in.
I found that if I moved my head and held it at certain angles that it would bring on the spins. Generally these subsided as soon as I put my head back in a "normal" position.
Loud noises and "busy" places were very annoying and tended to aggravate an attack.
I found that I might have days where I was experiencing mild vertigo. While annoying I was generally able to work/exist through them. I guess you just get used to it.
Patient 2
Male, Age 31, 8 year history of symptoms.
My perspective of Ménière's is like that of living with a time bomb that has a random number generator on the timer. You never know when its going to blow. As I understand it, the body loses control of the fluid regulation in the inner ear, then all hell breaks loose. I can usually tell when its going to happen, it is preceded by:
1. Fullness in the ear, popping like that you get when coming down from a mountain.
2. As the attack nears, my hearing gets worse.
3. Then my vision becomes like "tunnel vision"
4. I get very tired.
5. At peak, I sweat, throw up, sleep for 12+ hours .
6. The next day I feel as though someone beat me with a 2 by 4.
7. It takes two or three days to feel better.
Patient 3
Male, Age 46, 8 year history of symptoms.
I try and explain vertigo to people by telling them it is as if you drank a lot of alcohol and then rode an amusement park ride called the Tilt a Whirl. It's the closest thing I can use to describe what it feels like. The first time I experienced it, I was getting ready to go to a Denver Broncos game. I walked down the hallway in my house and ran into the walls five times in only a length of ten feet ! Went to the game anyway but I didn't have to drive and I certainly didn't drink. I had no clue what was wrong. I was very nausiated when I got home.
When I move my head from one side and stop in the the normal position, my eyes feel like they keep going to the other side of my head. I can't watch TV or even read a book. One time I decided to try and read a book but keep my head absolutely still. It didn't work.
The illness comes upon me with very little warning. Once, I was driving back from Arkansas with my wife. I felt kind of light headed. I got out of the car and started to the restroom and within three steps I knew it was all over (the vertigo attack started). I had no medicine so I took large doses of Dramamine and slept pretty much the next two days till we arrived at home. I now carry meclazine with me in my wallet. I also coach high school football. This last fall I had to ask another coach to take over for me because I knew I wouldn't be able to stand on the sideline. Sometime it only acts up for a day other times it goes for 5-7 days.
Patient 4
Female, Age 32, 22 year history of symptoms.
Life with Meniere's Disease : Before you judge me on one of my good days, you need to understand what one of my bad days is like.
Tinnitus - imagine having a headache caused by a fire alarm ringing or a bee buzzing in your ear continually for a long period of time. You can't hear anything but that fire alarm or bee - It drowns everything else out.
Vertigo - Now imagine yourself as really drunk or with the flu at the same time as the fire alarm is going off. Now imagine that with these two things, you'd be dumb enough to get on one of the super roller coasters that does loop-de-loops or the amusement park rides that spin in two different directions at the same time. I'm not that dumb, but unfortunately I have no choice in feeling these sensations.
During one of these vertigo attacks that can last from several minutes to several hours if not days. I can't keep food or water down, I can't walk, and in order to get out of bed to go to the bathroom, I have to crawl like a baby on my hands and knees. The movement makes me so ill, if I'm able to crawl back to bed, I'm covered in sweat from exhaustion. Otherwise, I keep a pillow and a blanket at the bottom of a linen closet in the bathroom so that I can pass out lying across the bathroom floor. I end up sleeping for days after one of these attacks, only getting out of bed to go to the bathroom or to get something to drink, if I think I can keep it down. I have to call my family to see what day it is when I wake up. That is, if I can hear.
You see, this disease while playing havoc with your balance and equilibrium, also reeks havoc with your hearing. It wouldn't be so bad if the hearing loss was constant and predictable. But no, one day I can hear conversation fairly OK, and the next I can be virtually deaf, then the next day I can hear again. The hearing loss can fluctuate, but is usually progressive, and many with the disease end up severely hard-of-hearing or deaf.
Even on a daily basis, your mind is so confused by the signals its getting from your ears that your balance sucks. You run into things constantly because you can't balance well enough to avoid walking into things, or your mind is telling you the object is a couple of inches from where it really is. I don't know whether to laugh or cry when someone teases me about being such a klutz. I could make the Keystone Cops look graceful.
I also have days that my coordination just doesn't seem to be together. I'm carrying something, and all of the sudden I drop it because my brain seems confused as to whether my hand is really attached to my body. I sometimes miss a step and fall because of the feeling that my legs are not quite part of me and I have to focus on them to realize they are there. Apparently this happens because the part of your brain that recognizes parts of your body as belonging to you is the parietal brain lobe and it sits right above your ear, so if the nerves around your ear are inflamed, it can press on this part of the brain, or send the wrong signals to it (I'm not quite sure which), and you can lose coordination.
Ironically, the few high frequencies I don't seem to have a hearing loss in can sound extremely loud, unbearably so. When a baby cries, an alarm goes off, or a microphone gives off feedback, I'd be willing to climb up a wall to get away if I thought I could make it. This symptom is called recruitment.
The disease also plays tricks on your vision. For some strange reason, the nerve that goes from your inner ear to your brain also controls some of your eye movement. Your eyes can twitch or bounce constantly, making focusing on objects, much less print, extremely difficult at times. Your eyes tend not to be able to "track" movement at the same speed, giving you double vision, and a bad headache.
You can get confused easily and your memory and concentration aren't reliable. It's what some people with the disease refer to as "brain fog". Many of them originally were afraid that they may have a brain tumor or Alzheimer's because it can sometimes gets so bad. Finally they find either a doctor whose very knowledgeable regarding the symptoms, or they happen to ask someone else with the disease, and find that this too is a symptom of this blasted disease.
Now try to imagine living with this disease never knowing when one of these periods of tinnitus, vertigo, hearing loss, double vision, lack of coordination, recruitment, disequilibrium, or "brain fog" is going to hit, or how bad it will be. At least with being drunk or riding an amusement park ride, you know what's causing it, and you can make the choice not to do it again. With this disease, there's very little warning if any for these attacks, you don't know what's causing it, and there's no cure - only devices, surgeries, and some medications that can somewhat help alleviate the symptoms. And some of the surgeries are so radical, you think they came from a horror movie about a mad doctor. My ENT surgeon won't even perform any more surgery on my left side, since I have the disease in both ears. He's concerned about what would happen if my right side became worse than what my left side is now.
Understandably, anxiety and depression seem to go hand-in-hand with Meniere's for many sufferers. We often ask how much worse can this disease get? For some strange reason, doctors aren't very willing to give out worst case scenarios.
Now decide if you think I'd be able to do the same things you do on as punctual and regular of a schedule. For me, there's no way. I'm being up front about my limitations. I try the best I can at living up to my full potential. Could if you were in my shoes? They think now that Van Gogh suffered from this disease, and he cut off his own ear trying to escape it.
Yet on my not-so-bad days I may look like a totally healthy, able-bodied person. You ask me "why can't you bend down - pick it up - lift it - drive - get a job - walk without a cane" Its because I know these things can either bring on an attack - I couldn't do them on a regular schedule because of the symptoms - or if I did do them, I could put myself and others in jeopardy if I should have an attack. You have to realize that with my friendship, love, dedication, and loyalty comes the fact that I can't decide when I'm going to have a bad day, and the more stress I'm under, the more likely I will have a bad day.
So, please don't judge me unless you've been in my shoes."
5. Eat one small meal every 2-3 hours
