Meniere's Disease - Invisible Disability
by, 02.20.2009 at 11.41 AM (1388 Views)
I have an Invisible Disability. It is called Meniere's Disease and it is a royal b@$*h. I hate it!
Like any good chronic disabling disease it came out of nowhere with no warning. It started May 3, 2006 I tried to walk down the hallway to go to my bathroom and I barely made it because my head was spinning. I then realized I was nauseous and so sat on the shag throw rug that covered the floor. It was at that moment I realized there was an odd fullness in my left ear and it felt as if it was going to pop. I tried I made it back to my bed but 10 minutes later I was running down the hall to vomit. I went back and forth like that for a couple of hours before I finally just said to hell with it and collapsed on the bathroom floor using my towel as a pillow. I slept there in the fetal position for a couple of hours.
When I awoke I was shaky and weak and my ear was ringing but the vertigo was gone! I called my girl friend and asked her to take me to the doctor the next day just to be sure. In the meantime I texted a buddy who just happend to be a doctor and told him what had happend. He diagnosed me over the phone! Ever the Doubting Thomas I thought he was wrong. I mean I knew he was a nice guy and a good tennis player but I had no clue if he was any good at his work. Duh! I've never been friends with anybody that didn't have a strong work ethic and wasn't pretty smart. When I went to the doctor the next day he asked me a series of questions and did some tests and came up with the same diagnosis as my buddy, Meniere's Disease. The doctor then told me that there was no cure but it wasn't fatal. He told me to reduce my sodium intake to 1100 mgs per day or less, then wrote me an Rx for Meclizine and sent me on my way.
The next few weeks were a rollercoaster of vertigo, vomiting, tinnitus and trips to the ENT for more tests. I found out that I already had an 8% loss of hearing in my left ear which wasn't bad compared to some. Apparently, over time Meniere's causes you to become deaf in the affected ear(s)
Currently they have no idea what causes the initial onset of this wretched disease or how to cure it. The treatments are at best a band-aid solution.
Different people can have different triggers for a Meniere's attack or episode. Mine can be brought on by changes in the barometric pressure, extreme heat, humidity, rain, snow, fireworks, my period, or extreme stress. ####! I was just healing from vulvar cancer surgery (benign). I didn't need this. I felt like my body had betrayed me. That summer was rough with 3-4 attacks a day almost every day. In the fall I got wise and started doing more intensive research on the net. I joined an online support group and learned that 1100 mgs was too much salt. I had to cut back to 800 mgs or less. I also learned that I needed to start cooking from scratch as most prepared foods are really high in sodium. I tried that but it was hard and my food tasted like crap. I settled on 900 mgs sodium per day which seems to be working. I also discovered that tap water has sodium so I started buying bottled water and using distilled water for cooking. Miracuously, I was soon able to go an entire day without vertigo! As the days stretched out I started to take back my life. The thing is I can't control the weather and living with my ageing parents can be stressful. I am fairly lucky though, I can sometimes go as long as 3 weeks without an episode. The last week has been hell for me though, because of the constant temperature changes and violent weather systems here in Georgia.
The symptom that never completely goes away is the aural fullness and the tinnitus.