Meniere's - My Story

gidget6kids

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I was diagnosed with Meniere's in 1989. It was one of those things that I didn't think much about. I had had a car wreck when I was 16 and I hit my head. Dr. said that was the cause. It started out with SEVERE vertigo where I felt like my body was standing still and the world was going a thousand miles around me and my eyeballs felt as if they were going around in my eye socket. Then there was the ringing or stuffiness bilaterally and the "I'm in a well hearing" kind of feeling. My memory started going, I couldn't grasp or hold onto things, I walked with my hand grazing the wall. It was just something I kept to myself. I couldn't turn my head without having a spell, lay down, etc. After my "spell" symptoms would subside, I would sleep for, literally, 24 hrs. It was almost like my body was on overload.

I felt that no one believed me or thought I was making things up for attention. My family was not supportive and when I got married, my husband didn't understand. It was a private struggle.

I had brief 'remission' until was 6 mths preg (from about 22-24 yrs old) with my second child. I got up to go to bathroom and I fell over. For 3 days, I couldn't walk or move. It was horrible. I went to the dr and they told me that it was simply "too much fluid" and I would be fine after I had the baby.

After I had the baby, though, I got worse. I couldn't turn my head, lay down, get up, bend over, turn quickly....nothing without having a severe spell. My spells last anywhere between 24 hrs and 3 mths. I have the forgetfulness, grasp problems, ringing, stuffiness, headaches, vertigo....everything except vomiting. I couldn't function. I couldn't take care of my children.

I began going to a chiropractor which helped me to live, again and I began taking maxzide and antivert. That helped. I now have 6 kids and am alive. I still struggle. My memory is shot and I struggle with hearing my kids clearly when they are reading things or talking to me. I walk with my hand grazing the wall and I recently had a spell while driving. I had to pull over because it was not safe for me to drive. My head can not ever be in a flat position, it has to be propped by 3 pillows, at night.

I am scared that my children might have it, so I am diligent about watching for dizziness and getting their hearing tested. I certainly do not want them to be debilitated as I have been.

I continue to take my meds, I am trying (LOL) to reduce my stress (which is a HUGE trigger) and I know when I need to slow down or stop. I'm learning how to listen to my body. I have some bilateral hearing loss, but not enough to warrant HAs yet.

Nice to meet people who know I am not crazy and feel my pain.
 
Sorry to hear about your problems that seems to be the cause from that car accident. If they started after the accident then I wouldn't think that your kids would get it because it is not hereditary. If the doctor said that the accident caused these symptoms, your kids should not get these symptoms.

Hope you continue to try to get better and manage your symptoms. It sounds scary to live with.
 
It sucks. I don't remember having any symptoms prior to the accident, so I am attributing everything to my head injury. I hope that is the case. My older girls have mentioned being dizzy but no ringing...that is positive :)
 
Hello gidget6kids, I have Meniere's as well. It's been over 20 years since mine first started. I have been deaf in left ear since birth (well that's what the dr's think). My right ear is losing hearing. At this point ENT says hearing aids will still work. I have experienced it all and tried many med's, diets, shots. There is no cure, so taking a day at a time. This disease is scary. Not knowing when it will raise it's ugly head. I have had the feeling that I was going crazy as well. I am reaching out to communicate with other hoh people or deaf.
Take it a day at a time and try to keep your stress level down.
 
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