I am writing this article with hopes that it might help those living with Meniere's or ear disturbances. I have never posted on this before and those that come to my website regularly may not understand what you read on this page. Those with complicated meniere's might find something here they can understand.
Living with Meniere's disease is truly uncomfortable. I know because I have Meniere's disease in both ears which is less common. We can go on the internet and read about Meniere's disease that is written by professionals. I am not a professional and I had to find a way to live with this disease because it can be very isolating, disturbing, depressing, miserable, so loud and distorted that you think you will lose your mind, so dizzy that you think it will never end but it does in my case go into remission, come out, go back into remission. However it seems when it is not in remission it will never end.
There are all kinds of symptoms and I can only explain what I have and my symptoms continue to change. Many of the articles on the internet discuss the vertigo part of meniere's but there are other less common problems that are truly awful. I know because I have them. I have frequent but mild dizzy spells and then less often but very bad vertigo spells which I thank God do not last but a few minutes to a few hours. I consider a vertigo spell meaning I cannot stand up due to dizzy and I am very nauseated. The mild dizzy has become a way of life and occurs when I move my head around or turn too quickly.
The worse part of having meniere's for me are pressures and sounds which I can only describe as roaring, hissing, feeling like I am living in another planet where all the sounds are off and very disturbing. Often I describe it like a mac truck is parked in my ear. A motor that will not turn off. It is truly horrible. The sound fills your head and there is no escape and I truly think that the doctors do not understand just how bad this part is for those that have this complication of meniere's. When it is roaring it is truly almost intolerable.
I found myself wishing I could lose all my hearing if it would help stop the terrible roaring but then I was thankful I did not when the symptoms would ease off. I have lived with this disease for years and I have lost part of my hearing due to this disease.
My meniere's is a bit unusual and even the ENT doctors did not understand until one of the older doctors more familiar figured it out and sent me off for testing. I was tested with some kind of pressure machine and was told "You may be surprised to know that you have it in both ears”. He said this because at the time it was only my left ear that was giving me so much trouble. It is uncommon to have it in both ears.
There was no help for me, only a diagnosis. So I have found my own way to cope and I learned to use distraction and to wear ear muffs when the sounds are so very bad which in my case so far when my meneire's gets full blown and the sounds get very loud it will last for about six to 8 weeks before improvement which is not typical. When I went to the internet to read about this disease I read that typically it last only hours or maybe a few days but once mine kicks into full episode it has been weeks or months. The head set that I wear comes from a building and supply and this was blue but I painted it black.
I have another type that is for wearing on airplanes and such that is called noise candeling. It makes a light hissing sound. I only wear these at times because only help in a mild case of meniere's.
Another one of my options are my ear plugs for when I am going somewhere. I am considering asking if they can make me some hearing aids that will just block sound but that will probably be too expensive. The problem with wearing the items to stop sound is with the outside sounds blocked the ringing and inside noise is louder because it is coming from within but I can tolerate ringing and inside noise better than external noises causing the roaring to be more distorted.
There really is no better description for what I call roaring. It is more like all the little sounds are too loud and the big sounds are confusing and off and it mixes up with the inside noises and pressure feels full and it roars. Going to a store, such as a large grocery store can be overwhelming due to the pressure change, sounds are so bad that it makes me dizzy so I avoid going anywhere during flair up.
One room in my house, my sewing room, is very small which makes it more comfortable due to pressure and sound. That room is also the room I can sit and embroidery or crochet or do whatever my eyes will let me do because meniere's seems to affect my eyes and if you are dizzy looking up, down or over is not something that I can do. So something in my hands that I can do without much moving around with my head is the best. I put a good movie on and put it on low and use that as a distraction.
This is crochet
This is embroidery
I love aprons so I have started sewing aprons.
When I have roaring but not the dizzy I can do more challenging handwork such as bobbin lace. The more I challenge my brain the more distracted I can make myself from the sounds. In my case sometimes I actually loose my hearing and at the same time things are loud. It is the sound being made by the disease that is loud and yet I cannot hear. Then I gradually can hear again. When I cannot hear and the noise is bad I get into things that take a long time so I do not think or try to hear anything. I want to be isolated during these times. So I work at what I can and try to make something difficult.
This is bobbin lace that I made to go on an apron.
One would think that with such a disturbing disease this would not be possible to do such precise work but the more I challenge my mind at my own speed or tolerance then the better my mental health.
I do not work an outside job because I quit work to take care of my parents and after they passed I did not return to work. Before I quit working I did have spells with my ears but at the time I did not understand what this was. My boss was very good with me during these spells. What would happen is my ears would distort sounds and I could not hear where the sounds were coming from, such as people talking to me. I remember a few times I wore a handmade note on my blouse to let people know I was having problems with my ears because my job was working with people. I feel now I could not hold a job with this disease as bad as it gets now. All the things I do here at home to occupy my thoughts for distraction I do off and on through the day as I feel able to do so. I feel that Meniere's is very debilitating and I pray for a cure. It is difficult to plan things in your life because you simply do not know when it will raise it's ugly head. This is why we must do something to distract ourselves as much as possible.
As I mentioned above, it seems that the room size or pressure is what affects the sound. I hope if you are reading this and you are searching a common ground here this might help. I will explain more.
If I am having the pressure and sound issues and I go outside my door immediately the sound is uncomfortable due to the pressure. I have no clue if there is a medical term for this but the pressure feels like it changes. If I step back in and put my ear muffs on and step outside I am not as confused or hearing disturbed but again the ringing will be louder. There is a difference in the ringing and the roaring sounds. I have a hard time in large buildings and when the central air units kick on it can actually cause me to get dizzy and sounds more distorted than they already were, there is no sense to this disease. It cannot be explained and there is no use to try and explain and so I stay home until the meniere's settles and fill my mind with other things. One day I was at the grocery store and had to leave immediately before buying groceries. I had been ok that day and I even drove there. I felt I was going to have a panic attack because I lost my sense of most everything. I had dizzy and sound problems hit at the same time and I had never had this before. I was sweating and got to my car and had to sit there for quite a long time until I could get myself home. Now I only drive If I go a long spell with no problems then I will make short trips close to home.
This is a dish rag that I crochet an edge. This is an easy thing to do because you can sit still and not move around.
I just do not fight it anymore trying to figure it out or find a way to make it stop because nothing has cured this and a procedure that may or may not work and it can still come back does not look like something that I want to try. I enjoy life to the fullest when I am not having the meniere's. I do not consider the ringing an attack because it always rings. What I consider as a menieres attack or episode are the loud sounds, pressure and intermittent vertigo issues. When the vertigo hits I stay down in my chair or stay in my bed with television on very low, a fan on in the room to help balance the sounds (don't understand why). I just deal with it the only way I know how because it is too unsafe to walk around.
This is a very serious disorder and I worry about those that are seriously depressed and are considering doing a terrible thing such as ending their life. One should never consider this because a clear day will come and this will go into remission. It may or may not come back but you will be a bit more prepared each time to deal with it. Those that take their own lives alter their entire family's lives. It changes the natural course of things and it is a very selfish thing to do so please if you are considering this I am begging you to please ask for help. We never know what we experience in life may help someone else and that is why we all push through it. It does help when there is someone out there that understands what another is going through so you could be of help to another that is suffering.
My husband bought me a Native American Flute and I have learned to play this flute even though it makes sounds. I even play it with my headset on and and on bad days I don't. The flute helps to feel connected in some way. I do not mope around because it does no good. Somehow we have to get a grip and do something so we do not get "into" this disease.
I found that when I first started with this disease I went to the internet and it did help to read about others. It does help to see how others are coping because this is so not normal to live this way and I am hoping I can say something to help you.
My suggestion is when you have a clear spell or remission learn to do all kinds of things. The more things you know how to do the more options you have during a spell. Learn sign language because it is possible that you might need it one day and you will be prepared if that should happen which is not the end of the world to not hear. Many people are deaf and lead a completely full life. Learn a craft to do with your hands.
Another suggestion is genealogy research is very good when you need to distract yourself. You can really get deep into research and you don't have to move around a lot. I have done a lot of genealogy research on all sides of my family and this is something you can pass down to your family.
The doctor's say to watch your caffeine, alcohol and salt intake but I do continue to drink coffee which is probably not good but I drink only a small
amount and I learned to drink it black which is something I never
thought I could do but now I truly enjoy it this way. I do drink a spot
of red wine now and then because it does not seem to make a difference. I am becoming suspicious that dehydration is what triggers my full blown meniere's attacks so now I am more careful to hydrate.
Sometimes we have to help ourselves and figure things out. One suggestion is to keep the floors clear so you don't risk a fall.
Check into your diet, my husband and I removed all sugar, as much processed foods and most grains from our diet. We both have lost weight and my meniere's has been much improved for whatever reason I am having longer remissions. I am watching my fluid intake making sure I am drinking enough water. Twice when I worked outside and got too hot I flaired so since I know this I am more careful to avoid getting over heated.
On my website I have recipes for many things. Since I have changed my way of eating I have considered removing many of the recipes but many times someone comes to my website looking for a recipe that I posted and finds other things more important so I leave these recipes for that purpose. I will now be posting more of what we are preparing for ourselves since we have changed the way we eat.
