OUR STORIES
Barb R from British Columbia, Canada
Since being dx with mm in 1985, I've had to take up some hobbies at home, so I love to cross stitch. I also do a bit of sewing when I'm able. I've had mm for 18 1/2 years. I'm 64 years old and have been married for 46 1/2 years and have 5 grandchildren. Triggers for me are lack of sleep, visual disturbances, any kind of motion, overhead fans, escalators, noise and congestion. I take 4 mg of Ativan and 48 mg Serc daily to treat my symptoms.
Sharon H. from California
Hi, my name is Sharon Harness. I am a friend of Jacki's, and also have Menieres Disease. Have had it for 40 yrs or so. I am now 56 yrs old. I live in California, and have all my life. I often wonder if the pollution here isn't one of the factors in my MM?? I also had (since a child) and am still having chronic sinus infections, so am sure this is another contributor to MM! Jacki is the wonderful friend who introduced me to the first MM coping list, and now is doing a great job of spreading the word via her own site. This is also where I have found so much great info and made some wonderful friends!
If your interested, and would like to read my story, please go to:
http:/www.sharonschateau.com/index.html
Please also fill out the Atypical MM form that I have on my site. There is some other information on my site that you might find useful/helpful. Things that I have tried that did or didn't help me. Meditation, chiropractic, etc. But always remember what does OR doesn't help doesn't mean it will OR won't help you! We are all so different, and yet the same. And so are our bodies. It is truly amazing how what affects one (such as coffee or chocolate) does or does not bother another! I take Antivert, which sometimes helps, others does not. Low dose valium when needed really badly, diuretic only occasionally as this causes me to have severe leg cramps at night. Even tho I take potassium to counteract this. I take vitamins and just found out in last month I have Rheumatoid Arthritis and gout. So am also on meds for this right now. I was also put on an anti depressant because of all the chronic medical problems I have.
I don't go out much, and usually only here in my own town, but do still drive. I watch a lot of TV, buy my own movies (have over 170 now)!, am on my computer a lot, when feel up to it. I read a lot, usually at night before going to bed. I also do a lot of self help reading. I honestly believe that one day I will find the possible one thing that might help me to feel better, and live a more normal life! Even if I don't, it is always best to keep trying! I don't expect to be cured, but even to feel better would be wonderful! I try to exercise a little each day to keep from getting more stiff, or worse than I already am.
Keith & Maria from Ontario, Canada
My name is Maria Parsons. My husband's name is Keith Parsons. We live in a beautiful little town on the edge of Lake Ontario called Coburg which is about 90 minutes from down-town Toronto (on a good day). We are on the Canadian side of the lake. I am originally from the USA born in Florida and a Navy Brat. Keith is from Montreal, Quebec. Now we reside in Ontario, it is indeed a small world.
We both have MM. We were diagnosed about the same time (fall of 1997). We had not yet met but through searching for knowledge regarding this unfriendly invader we discovered support, friendship and each other.
Keith is 53 years old and has remained employed in the computer analysis, architecture and security. He has fought this debilatating condition and has beared the lion in it's den, for the most part. Each day is a new day and with it a new set of battles for him. His MM has been much more debilitating for him due to severe bouts of daily vertigo. His once "good ear" develops massive infections known as cholesteotomas which have resulted in 4 brain surgeries and the loss of hearing. He has had several ear drum replacements and a total mastoidectomy. This has left him with only his Menieres ear for hearing. He uses a digital hearing aid which is of little or no value. He is often left to guess at what is being said because he only catches some words. He actually does have some "hearing" days which he utilizes to the fullest.
I am 56 years old and was told that I was a liability when initially diagnosed. Therefore, I am a retired clinical social worker. I spend my days or a couple of hours a day in the spring, summer and fall, in my gardens.....with my dogs. I sew a bit, but only for my granddaughters and now Keith. I have 6 adult children. Two of my sons are in the US Marine Corps and we have made trips to their graduations in Parris Island, South Carolina. I have two daughers and two other sons also.
Keith led a very accomplished and well respected rock and roll band for 29 years. He is a fabulous guitarist. His inability to hear his own music as he played made him feel that he needed to retire the band. He plays perfectly without being able to hear a note but the showmanship in his heart prevented him from continuing. He dabbles in wood a little, has done some beautiful work in our home but the power tools and constant imbalance do not make for a safe combination. Keith has a son who lives close by and they hit buckets of balls a couple times a year as a full game is no longer something Keith can do. His little grandson is old enough now to go and they make it a "guys day out".
With me the symptoms are a little different from Keith's. I have more of a balance issue....falling and decreased inability to judge distances etc. We both have tinnitus and daily dizzies, the floating boat episodes, sinking sensations, and the hot and cold changes. I have mouth sores and other autoimmune disorders which make it difficult for me to judge what is causing which pain or sensation, if it is sensory or is based in muscular/skeletal origins. I also have psoriatic arthritis, osteoarthritis, spinal stenosis, DDD, scoliosis and fibromyalgia. We both suffer from diabetes and Keith suffers from "sports injuries" He is currently in therapy for a torn achilles tendon.
We have 13 grandchildren together so we do spend a lot of time planning for things to do with them and for them. They are scattered around the US and close by (Keith's). We have made several road trips to see mine in the USA.
Our medications for MM are Serc, beclomethasone ag. and chlorthalidone. We both take other medications for other conditions. Weather seems to be our biggest mutual trigger along with a lack of rest and high levels of stress. He is affected more by noise because of his hearing aid and I am more affected by movement in my field of vision and contrasting colors or patterns.
Each and every day is a struggle for both of us and we try to keep a positive mental attitude (PMA) about MM and life in general.
Two who are overcoming bid you
Peace and Love
Sherry S from BC, Canada
My name is Sherry. I live in northern British Columbia at the end of the road. I have had MM going on for 5 years now. I am bilateral and I have had the Gentamycin injection in both ears. I didn't know a thing about MM. The doctor I was seeing was a specialist so I figured he knew what was best. So I let him do the injection in the right ear. Well after I came home sicker than a dog, to make a long story short, I did let him do it in the other ear. Again I was sick and I went to see another doctor and he did some tests, sorry I don't remember which ones. I found out that the Gentamycin did nothing for me, but it took away 20% of my balance. Now I find out it was 50% of balance that I lost. I am off balance all the time and I use a cane when I go out.
For medications, I take Serc, a diuretic plus Ativan when I need it. My hobbies are reading, knitting, oil paintings when I can do them and playing on the computer. Some of my triggers are a change in weather, wind and speed.
Jacki B from Saskatchewan Canada
I have mm, hypoglycemia, IBS, arthritis and migraines. Sounds kind of depressing hey??? I've been married for 18 1/2 years and have one son who will be 12 this year. I'm really into scrapbooking now and enjoy it, I call it my therapy. I also belong to a kareoke group and we get together once a week to sing and we have lots of laughs and fun, which is a good thing too. I was dx with mm 7 1/2 years ago and was on a rollercoaster ride for the first few years. I turned 40 last year (ARGH) but if anyone asks, I will say I'm 39 and holding for ever and ever and ever. I find that stress is a big trigger for me. Ceiling fans, vertical patterns, flickering lights, walking on uneven surfaces, big stores always trigger my mm and did I mention STRESS???? I now take Serc 24 mg, Elavil 200 mg, Dyazide and valium, gravol, bonamine or stemetil when I need it.