Some of us have chronic disorders that cause these symptoms every day. I am one of these people, my condition Meniere's Disease. Most of you have never heard of this and you should thank your gods that you haven't.
Last year around this time I posted an entry on facebook, DailyStrength.com, and Running in Circles-A Meniere's Disease Blog. This post detailed the symptoms of Meniere's Disease and some experiences of mine that illustrate some of what life is like living with this disease. This is that post. I hope you find it educational.
~*Wyvern*~
I posted this per the request of the Vestibular Disorders Association for those living with these debilitating illnesses to write blog entries to educate others about the realities of day to day life with a vestibular disorder. Originally I wasn't going to post here as most of you know the information this post contains... The response on facebook, however was so positive I thought I'd post it here so you may read it and possibly use it as an education tool for those of your friends and family that may not quite understand what we're up against. Feel free to pass this on!
Today is the first of September and the beginning of the 15th annual Vestibular disorders awareness month/week. The Vestibular Disorders Association (VEDA) has made the request that those of us that suffer from one of the many vestibular disorders take on the task of making people aware of the issues we face by way of blogs/tweets/journals/etc.
Many of you have probably never heard the term “vestibular system” before and are all most likely unaware of what it is and what it does for your body. The following is a brief description pirated from the VEDA website: “The vestibular system includes the parts of the inner ear and brain that process sensory information involved with controlling balance and eye movements.” Basically its the part of the body that is responsible for you're unconscious awareness of which way up and down are as well as things like depth perception and the awareness of where objects are in relation to your own body. There are many diseases and disorders, some temporary, others permanent, that cause this area to malfunction.
Today I am going to talk specifically about the vestibular disorder known as Meniere's Disease and my struggle to live with it. Meniere's Disease is caused when part of the vestibular region in the inner ear fills with fluid that can't be properly evacuated. This fluid is normal and, in a healthy ear, necessary to the mechanics of hearing. In someone with Meniere's Disease the fluid builds up beyond typical levels to the point that it puts pressure on the inner ear and part of the brain. The disease, while always present, becomes more active for some periods and less active for others depending on each person's individual triggers. These flares then cause a multitude of symptoms including:
1. Rotational vertigo
2. Pressure and fullness in the ear
3. Ringing in the ear
4. Headaches and Migranes
5. Nystagmus (twitching in the eyes)
6. Hearing loss
7. Loss of balance/Coordination
8. Recruitment (Noise perception abnormality)
I put a description of each of these at the bottom of this document so those that don't know what they are can read them if they want to
Like most Vestibular issues Meniere's Disease has no cure. There are ways to minimize and control the symptoms to some extent but everyone reacts differently so some things will work for some people and not others. I have been prescribed five different prescription drugs to handle this issue... One made the condition worsen to the point that I couldn't turn my head at all or even sit up for more than five minutes at a time for a whole week. Two of them made me so sleepy I would literally fall asleep at odd intervals throughout the day (including when I was walking). The other two had no effect whatsoever. I also tried two separate over the counter medications one of which didn't help at all and the other of which dried out my sinuses so badly I had nose bleeds every day. After that I was getting a little more desperate and decided to try non-traditional remedies... One was an aromatherapy oil which did nothing but clog my pores and make my skin break out... the other was a set of accupressure bands which when worn worked wonderfully for a few months. When I began to rely on them full time to keep me on my feet and functioning I found that the more often I wore them the less they seemed to help so I discontinued using them except in case of extreme need (such as if I have to go on a long car ride.) Now I am at the point where I simply try to control as much of my environment and activities as I can to minimize my exposure to those things that trigger my condition.
My personal triggers include: high humidity or rapid shifts in humidity (higher or lower), consuming a lot of salt or foods that are high in sodium, too much or too little sleep, and large crowded noisy places. It is also a really good idea to try to reduce the amount of stress I'm under. Some of these things are very obviously out of my own control, like the weather. The months of July and August in particular are very difficult to manage symptoms because the humidity is almost constantly high. Stress is another one I can't do a whole lot about. I have suffered from panic attacks for over ten years and though I'm getting MUCH better at controlling them some stresses are going to be no matter what I do.
The things I can control (like my sodium intake) I do so very vigorously so as to avoid as much vertigo as I can. My sodium intake is supposed to remain below 1500mg a day... Consider the following: a healthy diet usually includes 2000mg of sodium daily but the majority of people (especially in the US) tend to consume upwards of 4000mg every day and sometimes more. Here are a few statistics to put this into better perspective:
at McDonald's: a Quarter pounder with cheese plain has 1,190mg of sodium (just the sandwich... that doesn't include anything but the bun, burger, and cheese)
at subway: a 6inch turkey breast sub with just Italian bread turkey and lettuce had 810mg of sodium...so the foot long has 1,620mg and that is before you add cheese...
TGI Friday's Jack Daniels Chicken had 1800mg if sodium in JUST THE CHICKEN (not including the sides) the JD Steak and shrimp has 3580mgs (again not including sides)
These are all places to eat out but I'd also like to point out that this issue does not pertain specifically to restaurants:
Hot Pockets have between 600 and 800mg of Sodium IN ONE POCKET
Kraft Macaroni and cheese has 580mg in 1/3 of a cup
most lunch meat ranges between 650-800mg in 2oz of meat.
The general idea being that I have to be extremely careful about what I eat and how much I eat of certain foods...I need to avoid sauces, dressings, gravy, and anything with large amounts of cheese or processed meat. This is obnoxious and extremely irritating (but doable with some effort) sometimes I live on nothing but peanut butter and jelly if I'm having a particularly bad week. In addition I can't have any alcohol (or if I do no more than one beer). Low sugar (though I have more room to maneuver with the sugar than the salt) and low caffeine. Yes sometimes I feel like I'd be better off eating cardboard.
As the condition continues to deteriorate and my center of balance becomes more and more damaged I will eventually have to rely on a cane or a walker to get around just so I don't fall over. My hearing will degenerate until I am completely deaf. [UPDATE: I began wearing hearing aides in February 2012 and began using a cane all of the time in July 2012]
Some other things I do to avoid making my condition worse are the following:
I sleep 8-10 hours every single night (sometimes closer to 12)
I do chores around the house in 5 minute installments, sitting to do them whenever I can.
I do not do anything that requires me to use a ladder
I can't play video games that involve flashing lights, fast movement on the screen, or anything spinning.
I try to make sure there is a counter or a table to grab onto within easy reach of me at all times
I sit unless I'm required to stand.
I don't bend over at the waist, instead I squat down to pick things up, even small things and on bad days I topple over when I do that.
I don't turn my head unless I'm turning my whole body if I'm standing or my whole upper body if I'm sitting.
I have to date had two moderately severe injuries because of losing my balance and countless minor ones. I fell while I was stooping over the oven to pull something out of it and burned my arm, which got caught between the oven rack and the baking sheet I was pulling out...luckily the burns stayed within the 2nd degree range and though I have a scar from it no major permanent damage was done. The second time was when I was rounding a corner in a store and misjudged the distance between me and the shelving unit, which dug into my arm and took some of my skin with it. It took over a month to heal properly and once again I am left with a scar and though it probably would have helped had I had stitches I didn't think it was too bad at the time so I just left it heal naturally.
The main reason I am writing this in such detail is because people need to know that this kind of thing exists. Many that don't know me or don't know me well think that I am lazy or exaggerating my symptoms. They think that I choose to ignore what they say because I am too young to be going deaf... I don't look like I am disabled so many assume that I am not. This message needs to be spread! Not all disabilities are physically apparent! Not all younger people are able to do certain physical things just because they are young! It took me over five years to get an accurate diagnosis because my doctors where too busy looking at my age to see what was clearly in front of them! I hope that the things I have said today will make some kind of impact on the way people understand this illness and its devastating consequences to the lives of the people who must live with it.
I have been extremely blessed to have a wife, a sister-in-law, and a best friend that are extremely sensitive to my situation. They all help me whenever they can and none of them ever complains if I can't do something I said I would do because I am having a bad day. Many in my situation aren't surrounded by people who are as understanding and supportive as these three people are and I am thankful every single day for them and their staunch support of me throughout this process.
Please feel free to pass this note on in the spirit of awareness week!
~*Wyvern*~
1. Rotational Vertigo
Rotational Vertigo is a perception by the person that the world around the is spinning. Most people, as children, will stand in one place and spin around and around as fast as possible and then fall down and relish the continued sensation that the clouds in the sky or the trees about their heads are spinning. This feeling is with me on bad days no matter how still I sit. Some days its so bad that I can't even turn my head to look at something next to me. I challenge every single one of you to go one hour of one day not turning your head. If you MUST turn you have to turn your whole body if you are standing or the upper half of your body if you are sitting. Try this and then imagine having to move like this every minute of every day. That is what its like for me. Even on good days I try not to turn just my head for fear of setting off an attack. This vertigo comes and goes at whim. Nothing can stop it or make it better though there is medication for the nausea that goes hand in hand. This medication will only make you not be able to throw up. Nothing will relieve the spinning.
2. Pressure and Fullness in the ear
The pressure and full feeling the ears is reminiscent of the feeling you get when your ears are infected... except with a normal ear infection the problem goes away after several days on antibiotics. No amount of antibiotics will relieve the pressure in my ears. This of course causes me to lose most of my hearing. Worse than that I can feel the fluid moving around in my ears when it gets particularly bad. It feels like its all about to burst out of my ears and start running down my face at any second. Needless to say that is really gross and somewhat unsettling.
3. Ringing in the ears
The ringing (officially called Tinnitus) is something I consider to be the least of all of the evils that this disease visits upon me. Most of the time its in the background and I can't hear it over my surroundings though occasionally it will grow loud enough to interfere particularly at night when I'm trying to fall asleep.
4. Headaches and Migraines
The headaches, like the ringing, are less trying to deal with but are particularly annoying when I’m at work. The pain comes from right around my ears and if I try to massage the pain away I can feel the liquid in my ears moving around (yes that feels as gross as it sounds) I am usually able to avoid them turning into migraines if I take ibuprofen before it gets too bad however, coupled with the vertigo and pressure in my ears it sometimes feels like my whole head is going to explode right off my shoulders.
5. Nystagmus
Nystagmus is the medical term of involuntary twitching in the eyes. This is caused by the vertigo and can sometimes last a little bit beyond the actual vertigo attack. The worst part about this in particular is that when my eyes are moving around a lot I find myself unable to do things that require hand eye coordination up to and including not being able to fit a key in a lock or put a cap on a pen. This is very upsetting to deal with. On one occasion I was having such a hard time with my keys that Tabby heard my fiddling with them and came to open the door for me so I could stop. I nearly cried in frustration when that happened.
6. Hearing Loss
The pressure in the ears causes damage to several things. One of them is parts of the ear that are responsible for hearing. The more often there is pressure in the ears the more damage is done to the hearing. Normal people can hear the whole range of frequencies at approximately 10 decibels. The more damage to the ear, the higher the decibels (louder) the sound has to be to be heard. Currently my hearing is between 35-50 decibels depending on the frequency (my lower and upper frequencies are the worst) I do need hearing aids already but they are $6000 a pair so that isn't something that is financially feasible right now. I started teaching myself to read lips starting a year ago but I can only do it if the person speaks slowly. I also rely on subtitles or closed captioning when I watch TV or movies.
7. Loss of Balance and Coordination
As the condition deteriorates the pressure on the inside of my ears will destroy my balance center. The more often I have flares and pressure in my ears the more trouble my body has keeping its balance... The result of this is that when I walk I can't walk a straight line. My body lists or pulls to the right. When I walk down a straight corridor I almost always end up walking smack up against the right hand wall. When I walk on the sidewalk my body pulls me into people's yards or onto the street (depending on which is the right side at the time) It takes concentration and effort for me to avoid this. It also causes me to bump into things that are on my right side when navigating in stores or offices: people, carts, shelving units, furniture, etc.
8. Recruitment
Recruitment is a little bit complicated and at first glance makes no sense but I will try to explain it to the best of my ability... One of the structures responsible for hearing are small hairs on the inside of various organs inside the ear. Each group of these hairs are responsible for conducting different tones. The pressure caused by the Meniere's disease bends and breaks these hairs after awhile. As these hairs break they don't function any longer and so they body loses the ability to hear those tones... or would if it weren't for recruitment. As the hairs lose their ability to function the hairs surrounding the damaged one are “recruited” to take in the tones that the dead ones were once responsible for. This sounds like a great idea to prevent hearing loss right? WRONG! The hairs that are now taking on multiple ranges are also now taking in at twice or three times the volume! So the person can't hear certain tones and those they can hear are EXTREMELY loud. This causes several problems...In places with lots of noise the constant background noise is amplified enough it sounds like a angry nest of hornets, things that are usually quiet enough for people to ignore (like shuffling of papers) are now so loud you can't hear yourself think over them. Even the pitter patter of rain on a window sounds like someone is dropping bombs on your house. Anyone who has seen the movie “Freddy's Dead” and remembers the scene where Freddy tortures the deaf kid by turning up his hearing aid will know what I'm talking about... only this isn't a movie... and its certainly not a joke.
