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.

More information on Menieres from different links.

MENIERE'S DISEASE INFORMATION PAGE

Meniere's Disease is a disorder of the inner ear or labrynth. The most prominent symptoms of this disease include episodes of dizziness or vertigo, fluctuating hearing loss, tinnitus (ringing in the ear) and nausea and/or vomiting.

An attack of Meniere's Disease is usually preceded by fullness in one or both ears. Hearing fluctuates or changes in tinnitus may also precede an attack. A Meniere's attack generally involves severe vertigo (spinning or whirling), imbalance, nausea and/or vomiting. These are the classic symptoms of mm (morbus menieres). While the classic symptoms of mm are not always present, hearing loss can precede episodes of vertigo by several years. In most cases it has been documented that the vertigo usually comes first in Meniere's Disease, while the percentage of those who have the hearing lost first is on the increase.

Menieres can be very debilitating to some patients, while others only experience mild symptoms. Vertigo is the most prominent symptom of mm and this symptom usually brings more patients to the ER than any of the other symptoms of mm. Most patients describe an attack as a sudden spinning or swirling sensation where nausea and/or vomiting usually accompany the symptoms. In some cases the violent vertigo is experienced, while other patients feel more off balance than dizzy. These attacks vary in time, some may be a few minutes, a few hours or even some cases may last for a few days.

There is no known cause of menieres but some experts speculate that the herpes virus is somehow involved or the immunologic function of the endolymphatic sac----immune disease. For the most part the underlying cause of mm is unknown but is most often attributed to viral infections of the inner ear, head injury, a hereditary disposition or food allergy.

It is difficult for doctors to diagnose mm as there are other diseases that can mimic mm. A number of these diseases are of the peripheral and central nervous systems. A misdiagnosis can seriously compromise treatment protocols and the patient's health.

Vertigo is caused by excessive fluid in the inner ear. This fluid stretches the membranes which then decreases the hearing and can also cause the tinnitus. If these membranes are stretched too much, rupturing of the membranes occurs and causes vertigo.

Diagnosis is made based on a combination of the right set of symptoms (usually dizziness and hearing disturbance), hearing tests which document that hearing is reduced after an attack, and then gets better, and the exclusion of alternative causes. The process of diagnosis usually includes a hearing test, a ENG and several other tests along with CT scans and MRI scans.

In the inner ear, symptoms are thought to be caused by endolymphatic hydrops, excessive accumulation of fluid in one of the very delicate membranes - lined chambers of the labrynth. Symptoms may be worsened by stressful situations, execessive alcohol, dietary, sodium, caffeine, smoking and possibly food sensitivities.

In most cases mm is intermittently bothersome, there are periods of increased symptoms which may occur without warning, followed by periods of what some would call remission. However, this is not always the case and at times takes a much more serious course in some patients with frequent disabling attacks of vertigo, hearing loss, constant roaring (tinnitus). It is not possible to predict what will happen with a patient as everyone is different and also responds differently to treatments.

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To try to introduce uniformity into the diagnosis and treatment of Ménière’s disease, the American Academy of Ophthalmology and Otolaryngology introduced guidelines in 1972, which were revised by the American Academy of Otolaryngology-Head and Neck Surgery in 1985 and 1995. Based on control of vertigo, disability, and effects on hearing, these guidelines are now a widely accepted tool for evaluating treatment.

Clinically, three stages are generally recognised.

Stage I—In the early phase of the disease, the predominant symptom is vertigo. This is characteristically rotatory or rocking and is associated with nausea or vomiting. Signs of vagal disturbance, such as pallor and sweating, may occur, but loss of consciousness is not a feature. The episode is often preceded by an aura of fullness or pressure in the ear or side of the head and usually lasts from 20 minutes to several hours. Between the attacks hearing reverts to normal and examination of the patient during this period of remission invariably shows normal results.

Stage II—As the disease advances the hearing loss becomes established but continues to fluctuate. The deafness is sensorineural and initially affects the lower pitches. The paroxysms of vertigo reach their maximum severity and then tend to become less severe. The period of remission is highly variable, often lasting for several months.

Stage III—In the last stage of the disorder the hearing loss stops fluctuating and progressively worsens, both ears tending to be affected so that the prime disability is deafness. The episodes of vertigo diminish and then disappear, although the patient may be unsteady, especially in the dark.

Currently, the treatment of Menière’s disease is empirical. As yet, no treatment has prospectively modified the clinical course of the condition and thereby prevented the progressive hearing loss. The reasons for this are fourfold. Firstly, the precise aetiology is unknown. Secondly, the placebo effect of drugs in this disorder is widely recognised. Thirdly, the disorder has a tendency to relapse and remit. Finally, the clinical course of the condition is such that over several years the vertigo eventually disappears in about 70% of patients. Nevertheless, there are numerous conservative and surgical measures available to otolaryngologists that are aimed principally at abolishing the frightening and disabling vertigo with which patients present.

Conservative measures
Time spent giving a complete explanation of the disorder and an outline of the anticipated course of the disease is therapeutic in itself and invariably has a positive effect on the subsequent management. Clinically, three situations arise in which drug treatment may be useful.

Acute attacks—Drugs aimed at sedating the vestibulo-brain stem axis are particularly useful in aborting acute attacks. These include prochlorperazine, cinnarizine, promethazine, and diazepam. Longer term use of drugs such as prochlorperazine is inadvisable as the attendant sedation may be unacceptable, and the risk of extrapyramidal side effects from protracted use requires caution, particularly in elderly people.

Maintenance treatment—Dietary salt restriction and the use of diuretics such as frusemide, amiloride, and hydrochlorothiazide is an attempt to modify the endolymphatic hydrops itself. The basis for this is historical rather than scientific as the data from the few controlled studies that exist are conflicting and the placebo effect is clinically significant. Vasodilators are used for prophylaxis on the basis that hydrops is due to ischaemia of the stria vascularis. The histamine analogue betahistine has been subject to some scientific scrutiny, and several controlled clinical studies have shown a significant improvement in vertigo, hearing loss, and tinnitus in the short term. Currently, betahistine with or without a diuretic constitutes the favoured means of providing maintenance medical treatment. Drugs such as cinnarizine, propranolol (particularly if the patient has a history of migraine), and corticosteroids are also used empirically by some clinicians if the patient’s symptoms are refractory to the above measures.

Ablative treatment—The toxic effects of aminoglycosides on the sensory neuroepithelium of the inner ear have long been recognised. Medical ablation of the end organ with systemic streptomycin controls vertigo and has been useful in advanced bilateral Ménière’s disease when poor but aidable hearing precludes surgical intervention. Cumulative doses of streptomycin, however, carry a risk of cochlear toxicity, and the incidence of ataxia and oscillopsia becomes unacceptable. The indications for this form of treatment are therefore now limited, particularly with the current interest in intratympanic delivery of gentamicin. Several series show a rate of control of vertigo of around 90%, though a cochleotoxic effect is seen in 15-25% of cases. The future for intratympanic aminoglycosides in Ménière’s disease is therefore promising.

Surgical treatment
Whether as the result of medical treatment or as a consequence of the clinical course of Ménière’s disease, around 70% of patients have a sustained period of remission. This implies that a quarter of patients continue to have clinically important episodes of vertigo, and surgical treatment must be considered for them. The various surgical procedures advocated in Ménière’s disease continue to arouse great controversy among otolaryngologists. The decision to operate and choice of procedure are often dictated by the individual surgeon’s understanding and experience of a particular technique and of the threshold for surgical intervention. Broadly speaking, surgical procedures for Ménière’s disease are classified as destructive or non-destructive with respect to hearing.