My Meniere's Story

I'm not sure exactly how long I've had Menieres, but I do know that I have had dizzy spells off and on as far back as I can remember but were never severe enough to warrant any testing. In January of 1995 I was having more dizzy spells and always felt like my head was plugged or something. My doc at that time said that I had a wax build up for which they flushed out my ears and it seemed to clear up for awhile.

It wasn't until June of 1996 that I started having the severe dizzy spells where I had to lie down before I fell down. I was admitted to hospital and was treated with IV Gravol and Antivert. After 6 weeks of being in and out of the hospital I was finally sent to Saskatoon which is 3 1/2 hours drive from my small home town. I was admitted and underwent a series of tests ordered by the neurologist. These tests included CT scans, spinal taps (awful), EEG, ENG, ABR and some other tests which I can't remember the names of. I also saw an ENT who after talking with me for about 5 minutes diagnosed me with Menieres Disease. I was released from the hospital 9 days later after recovering from more attacks and a headache as a result from my spinal tap. I went to the ENT's office and had a hearing test done which was normal. He gave me a brochure and said come back in 6 months for another hearing test.

I went home glad that I had a diagnosis, but depressed because no one seemed to know too much about it. The brochure said there was no cure and I was devestated and had to learn to live with it. My family doctor put me on Ativan 1 mg at night to help me sleep and also put me on Prozac. I tried Antivert but it didn't help my dizziness at all. The only thing that really gave me any relief was Gravol which I took for the nausea that always accompanied my dizzy spells.

I started to do some of my own research on the disease. I turned to the internet for help and I found lots of information about Serc which is a medication prescribed for the treatment of Menieres Disease. I took this info to my doctor and he agreed to prescribe it for me. I started on 4mg three times a day. I didn't really notice any changes in my symptoms at all so I stopping taking the Serc. I continued to have the severe debilitating spells which would land me in the hospital for days at a time. In October of 1997 I found a support group online and it was there I found many new friends who basically saved my life. I soon found out that I was not alone, in fact there were thousands of people all over the world who were afflicted with this disease. I started corresponding with the group and soon made many wonderful friends there and they became my lifeline to the outside world. I have even got to meet some of these wonderful people in person, there are pictures posted on other pages of this site.

Soon after being diagnosed with mm ( Morbus Menieres) I also began having severe ear infections, headaches and pressure in my head that wouldn't go away and ringing in my ears which sometimes changed to clicking or static noises. My hearing has decreased slightly in my left ear since and fluctuates a lot since being diagnosed and my ears shut off quite a bit but I do notice my left ear (my bad ear), I can't hear as well while talking on the phone.

In February of 1999 my doctor increased my Serc to 24 mg per day. This seemed to help a little and decreased the frequency and intensity of my dizzy spells. I also started taking Valium 2.5 mg 3 times a day which also helped. I also tried the Scopalamine Patch for nausea but I couldn't wear it because it blurred my vision so severely it only made sicker than I already was.

I was also diagnosed with hypoglycemia in August of 1998 and since then have learned how to control those symptoms along with my low blood pressure. I think this has also helped lesson the severity of my attacks. I also follow a low sodium and no caffeine diet which does help me a lot too. In November of 1998 I went to see a specialist in Lethbridge, Alberta as there are no specialists in Saskatchewan where I live. We drove 13 hours to see this neurologist with a special interest in Otolaryngology. It was a wasted trip because this doctor wouldn't listen to anything I had to say. He told me I had to stop all the medications I was on and go on a NO-SALT diet for 6 months and I'd be cured. Ha! that was a laugh and a half. Needless to say I left his office very disappointed and did not go back.

In April of 1999 my husband and I flew out to Ontario to see Dr. Lorne Parnes, who is a Neuro-Otologist in London. I had some CT scans done and also had the ENG test and couldn't finish the test because I got really sick from it. Anyhow Dr. Parnes came to the conclusion that I had Atypical Menieres Migraine Induced, he was going to send a note to my doctor to prescribe a new medication (can't remember it now) to try. Both my family doctor and I were not sure about this diagnosis but I do have daily headaches and sometimes they turn into migraines especially under stress. Oh well my trip was not a total waste of time, while out there I got to meet 7 other people from my online support group face to face. It was the best day of my life and one I will treasure forever.

In February of 2000 I went to the University Hospital in the city for more testing and the dreaded ENG. When I had the test done and it didn't affect me at all and the other tests my hearing was down but nothing else to report. It took me 4 months to get the results from those tests from my now EX-ENT. He told me I had more than mm going on because my dizziness tests were abnormal (whatever that means) and see my neurologist, well my neurologist wouldn't see me because she said its only menieres and nothing else.......ARGH!!

My Symptoms

In the beginning I suffered from very severe debilitating vertigo attacks which would render me helpless. I would have drop attacks commonly referred to as "Turmarkins Otolithic Crisis" where I just fall to the ground out of the blue with no warning. If I didn't hurt myself I could get back up and carry on with whatever I was doing. Other times I have fallen and actually passed out, now these attacks scared the heck out of me because I usually wake up with the world spinning around me 100 mph and then I start throwing up. I had been admitted to the hospital on so many occasions in those first few years after being diagnosed with mm. It has been a struggle to keep my sanity, but with the help and support of my friends from my online support groups , I have survived thus far and will continue to do so. I still get the pressure in my ears with weather changes and now I have fluctuating hearing loss. The tinnitus (ringing in my ears) has also progressively increased over the years too. The severity and frequency of my attacks have decreased dramatically although I still do have minor dizzy spells and have had a few bad spells in the past year but I know what triggered these attacks.

With the fluctuating hearing loss, my ear will just shut down all of a sudden, like someone slammed a door shut to a sound proof room. I can't hear anything at all and then if the hearing doesn't come back in a few minutes, the tinnitus will start and gradually get worse. This happens to both my ears but not at the same time thank goodness. The longest time one of my ears shut down was for 10 days and that was the worst, the tinnitus just about drove me crazy. I had to keep the stereo or TV going loud to drown out the noise. I have noticed too that if I don't get enough sleep, the next day my mm symptoms are increased.

Taking 24 mg of Serc per day, I have found that this has drastically reduced my symptoms. In the summer of 2003 I was in a minor car accident and I really had a bad dizzy spell from it but thank goodness we were ok .I do notice my symptoms increase when I'm under a great deal of pressure. Stress is definitely a trigger for my mm. I still get daily dizzies but they are minor 1 minute spins or sometimes half a spin and I have to grab something because it feels like I'm falling but they don't last long, I can definitely handle these ones better than the major attacks I used to have. I also take an antidepressant called Ludiomil 150mg per day and and Topomax 25 mg per day. My doctor has also put me back on Dyazide once a day to help with the fluid levels in my ear. It does affect my blood pressure, so I have to be careful when standing up from either a sitting position or lying down. I take valium and Ativan only when I need them and usually at night to help me sleep. I also take Gravol for nausea when I need it.

Over the past 9 years, the one thing I have learned from having this disease is that I now appreciate each day as it comes, I don't think about yesterday, it is history, tomorrow is a mystery and today is a gift called the present. Why ruin today by worrying about the future, take one day at a time and stop to smell the roses. Live life to the fullest when you can.

When you're in pain

and it seems like no one understands

When it has gotten exhausting

to even talk about the way you're suffering

Remember God.......

Others may turn their back on you

You need explain nothing to Him

He knows how your suffer

and He can see what's in your heart

Lean on Him

Put your faith in Him

He promised that He would never forsake you

and you can depend on Him

(Written by Bobette Bryan)