I am 36 years old and I have been suffering with Meniere’s disease since 1998. The first 2 years I saw several doctors that couldn’t figure out what I had. Finally the 3rd doctor said I had Meniere’s, after I took folder full information that I researched, and was giving a water pill & meclizine. I was ok for about 3 years but then I started having severe 14hr attacks. So I was given Valium. Which did not please me parents because they heard that Valium was very addicting. When I took it I was ok for two days but when the third day came I had the worse 14hr vertigo attack that I ever had. It think point I was married and there were days when I was home alone and after 14hrs how was I going to the bathroom. I rolled off the couch and crawled to the bathroom and pinned myself against the wall. My husband had come home and saw me laying on the floor. Then I was at the point I could no have any salt or caffeine. I thank God for My husband because he had to make everything I ate from scratch. I felt bad because he ended up eating the same thing. It was some pretty bland stuff. I also could not eat any red meat. If I did it would almost instantly start an attack. So after the 2 months I lost more than 20lbs. All the doctor said he could do was to give me drugs which were not working. Luckily my sister in-law was going to the University of Florida studying to be a physician’s assistant. Her roommate was studying in the ENT program. My case was given to the ear surgeon that was also Chairman of the Department. He wanted to see me as soon as possible. I went to Shands Medical Center and found out that I lost 30% of my hearing in my left ear. He told me about different surgeries, antibiotic treatments but they would destroy any hearing that was left. Then he told me of a new treatment that nobody in his office had tried before, the Meniett Device (http://www.medtronic.com/patients/menieres-disease/therapy/index.htm) and there weren’t any major side effects. I said I try anything. In order for the machine to work though a tiny Tympanostomy Tube (http://emedicine.medscape.com/article/1890757-overview) had to be inserted into the ear drum. When that tube was in place the fullness disappeared like letting air out of a balloon. I started out using the machine three to four times a day. After a few months I was only using the machine once a day. Now I rarely use it. But when the tube naturally comes out I have about a month to get a new on inserted before the vertigo attacks start again. As of today I still take the water pill and I have the meclizine on hand just in case with the Meniett device always handy. I only eat red meat once a week cause anymore than that will make me feel dizzy. I try really hard to keep a low sodium diet, about 1000mg a day and I’m now able to drink caffeine but only a few a week. As long as follow this diet I feel great. But being a Christain, in the last few years I feel called to help others cope with the hidden disease. The worst thing one can feel is being alone. I first took over a Facebook Support Group that has over 2000 members. It is open group which mean anyone on FB can see the posts. Some had issues with that due to the fact hey have family members or friends that just don’t understand & think it’s fake. So I decided to create a private group where people can feel more safe & willing to open up able this terrible disease. Sure it’s not cancer or anything life threating but many patient loose their quality of life. They can’t work anymore or even drive in fear of having another attack. Marriages fall apart & some feel so depressed that they try to commit suicide. I feel like one of the lucky ones. God has given me peace. In the need few post I will explain what is currently go on.
Meniere’s can be a very scary disease. The biggest thing is realizing you are not alone in this. For me if I can help one person feel better than all my suffering was worth it. So I will do my best to give readers daily updates so you can understand what a Meniere’s patient goes through, good or back. Please feel free to ask my anything or even a prayer request. Whether you believe in him or not. He has helped me & now he is telling me to help you.
I hope writing the blog helps with the Meniere’s or at least coping with it. My sister had Meniere’s and it was a living nightmare for her. I have decided to raise money for research and also to help fund a support network in Australia. It is in memory of my sister and my plan is to ask Artists Designers and crafters to make Art Christmas decorations and I will sell them at galleries and art events in December with all money raised going to the two funds. If you are interested please go to: https://www.facebook.com/MarionsArtree for more information. Or if you want to ask a gallery in your local area to do the same, maybe this will be a world wide fund raiser!
The blog has totally helped me cope with Meniere’s because it let’s me help others. I truly believe God has given me this challenge to understand it then pass on the information & support to others. Sure a I have some bad days but to hear someone say they don’t feel alone with this disease anymore is all worth it. I never pictured myself having such a disease but if it helps me do God’s work then I have no complaints.