Friday, May 30, 2008

Meniere's Disease - What Does It Really Feel Like?

Textbook and web descriptions are pretty generic. Meniere's symptoms run the gamut from vague and indescribable to stark and obvious. There are three categories of symptoms: dizziness, tinnitus and hearing disturbance. But each of these is multi-faceted and each changes over time as a result of both treatment and adaptation. Furthermore, each of these symptoms can occur with other illnesses or conditions.

Meneire's Disease is a subtle tormentor. If you've adapted fairly well or if your physician has your symptoms under control through treatment, you are not good as new. But you may appear to be so. Many people around you will quickly forget that you are suffering. They may notice that you don't hear as well as you used to, or that you stumble sometimes. But they do not see or feel what you feel. That's why it is good to think about what the symptoms are really like. It will remind you and any of your loved ones who are reading your words that you are truly dealing with something difficult and real, on a daily basis. But what's more, it may just help to show you that this disease might just be downright tolerable.

Dizziness
I would distinguish between vertigo, dizziness, and instability. Vertigo is a spinning of the perceived world regardless of whether or not your body is moving. It's similar to what you see if you spin in circles many times, or what you feel when you go to bed after having drunk too much alcohol. Things spin and you can't stop it. Standing or walking are out of the question. It's horrible, terrifying, and nauseating. Fortunately, for me anyway, it only occurred with Meniere's Disease a few times. I have a strong stomach and I'm happy to say that I never vomited once from this damned disease. But I'm one of the lucky ones. Many people have been hit so hard that they have been physically ill many, many times. For me, true vertigo only happened at the very beginning of the illness during "attacks", and for a day or so about three months after onset. And again fortunately, I was able to withstand this vertigo by lying down and closing my eyes.

To me, dizziness is when your head feels as though it's spinning for a moment and it causes you to be unstable. We have all experienced this when, for example, we stood up too quickly, or turned our head too abruptly. It may occur as a result of peripheral visual stimuli. This is why some people have trouble reading while riding in the car. Dizziness is common in Meniere's Disease, especially at the beginning. But I still have dizzy moments. Several months after onset my family and I visited Myrtle Beach with some relatives. Mostly I just sat in a folding chair on the beach, but occasionally I attempted to move around a little. I recall standing at water's edge and having a horrible time when a wave would come in and then recede around my feet. If I looked down and saw the water and sand moving back out towards the ocean, I would be very dizzy and would almost fall down. This would disappear when I moved to stable ground. Now (13 months after onset) I do not have much dizziness, but I know what to avoid. I will freely admit that spinning around is completely out of the question for me. Closing my eyes and pointing my face upward will almost certainly make me stumble.

Instability is a mainstay for me. If you weren't clumsy before getting Meniere's Disease, you will be after. This is really rather tolerable, however. If I'm walking down the hall and turn a corner, I may stumble a bit or may have to touch the wall. While riding my bike if I look down to, say, check that my rear tire is fully inflated, I may swerve to the left (towards my bad ear). I feel relatively unstable in most dramatic body movements, such as jumping. But I'm used to it now, so it really is not a big deal. Recently I tried to jump up and grab the end of a helium-filled balloon that a child had accidently release and was stuck on the ceiling. It was about a foot and a half above my outstretched hand. It was not a difficult jump, but I had to keep looking up at the string in order to grab it. That was very difficult and made me feel very clumsy.

But hey, I got the balloon and the kid was happy.

Tinnitus
I really hate tinnitus. It's a ringing, hissing, buzzing, stupid, godforsaken spontaneous sound in the ear that won't go away, can be anywhere from tolerable to insidious, benign to crippling. I've always had it to some degree, and I've heard the same from others. But since Meniere's hit my left ear, it's been far, far worse. Very loud. Almost always noticeable. I don't think much is known about what tinnitus is, what causes it, and what might alleviate it. The only explanation I've received from and ear doctor is that it's the brain's way to compensate for hearing loss. That seems believable except that it doesn't explain why I've always had tinnitus to some extent, even before Meniere's Disease, and even in the ear that has "perfect" hearing. Tinnitus also varies with other factors such as pressure in the ear, time of day, and stress. When I have a cold and am blowing my nose often, or when I fly, it's worse. In the late afternoon through the evening it's worse than it is in the morning. When I'm stressed, it's worse. That suggests that there is a perceptual component to tinnitus. But I can also affect the loudness and "quality" of my tinnitus by clenching my jaw a certain way. That and the pressure issues suggest a physical component.



So we have three possible reasons for tinnitus: the brain trying to compensate for hearing loss, overall stress levels, and mechanical factors. Fortunately, there are ways to address all three. I mentioned a Meniett's Device in a previous post. This is a new treatment designed to teach the brain to cancel out tinnitus. It involves calibrating a listening device to the frequency of your tinnitus, and then embedding specially tuned sounds in music. The patient listens to this music for several hours a day for a few months. Results have been promising. It is not easy to get a Meniett's Device, however. I have been on a waiting list for one through my ENT for four months now. I eagerly await it, and my doctor assures me that I am still on the list and will receive it when they've crossed the necessary hurdles. Apparently it's a training issue or something like that. Come ON, people!



There are many ways to treat the stress component. I will not pretent to have conquered stress, but I have thought about it and worked on it long enough to know that, for me, vigorous daily physical exercise in indespensible. I cannot say enough about this. I believe that it has helped me deal with the challenge of Meniere's Disease, as well as many other challenges in life, better than anything else. Anti-depressants have also been helpful for me, particularly in the first several months of the disease, which are the most frightening. I do not believe that I will need to take anti-depressants indefinitely, but they sure have helped me get through the first stages of this disease.



Some other ideas: therapy, meditation, yoga, boxing, knitting, gardening, para-gliding, hiking, chopping wood, reading, painting, weight-lifting, swimming, bingo, cleaning your basement, writing a letter, playing with your kids....



Hearing Disturbances
There is hearing loss, to be sure, but the remaining hearing is just not right. That's why I say hearing "disturbance" rather than simply "loss". Early in Meniere's I was most frightened by the dizziness. When you cannot stand or walk, subtler sensory concerns take a back seat. But once the dizziness became commonplace and I began to adapt, other symptoms began to disturb me more. It was for some time tinnitus, because now this is the most noticeable symptom on a daily basis. But I have hope that it can be treated. And it's not much more than annoying. It's just not that big a deal in the context of all the other symptoms. Currently, and I suspect for the remainder of this disease, the hearing disturbances are the most upsetting. What's lost is gone and it's not coming back. And it'll probably get worse.

The hearing in my left ear is compromised mostly in the upper ranges. Several hearing tests have shown this, but it's obvious. I cannot hear the "s" sound when spoken. When my good ear is covered, it is very difficutl to discern conversation at a normal level. The distinctions between words seem to be lost. And the hearing seems to drop off rather dramatically by distance. I can carry on the phone conversation with no problem with the receiver against my left ear. And I suspect I could converse in person without a problem provided that the other was not further than two feet from my ear. But move them to twelve feet away and I will have problems.

My ability to detect middle and lower frequencies seems to be intact. However, these sounds are distorted, particularly at high volume. Loud low frequency noises are very uncomfortable; things like large trucks passing me on the street, booming bass-heavy car stereos, etc. They seem to cause actual physical discomfort in the ear, as if the movement of my eardrum in response to these sounds actually hurts my inner ear. Loud middle or higher frequency noises are worse. They cause a kind of distortion in the ear that is very, very uncomfortable. It is much like a cheap radio turned up way to high. I have two toddlers and toddlers are fond of screaming for fun. And they have unearthly high-pitched screams. When they do this, which is often, I have to cover my ear as soon as possible.

I think what bothers me most is the obvious fact that these hearing disturbances have worsened over the last year, and will likely continue to worsen. I have a strong feeling that my left ear will eventually be no more than a prop, or a decoration. This is very frightening to ponder, particularly considering that Meniere's Disease is 15 - 30% likely to occur in the other ear. I'm not sure what else to say about this. Most challenges are tolerable to me when I can identify some kind of strategy to improve them. This I cannot. I'm open to suggestions.

Tuesday, May 6, 2008

Update on Meniere's Treatments

Diuretic and Low Salt Diet

I stated earlier, or intended to, that I would like to eventually stop taking the diuretic Acetazolamyde (Diamox) and instead use a low salt diet to manage my Meniere's symptoms. The main reasons are that I don't like to take medication, and I have been wary lately of the side effects of this diuretic, particularly low potassium levels. I should note that my doctor does monitor my potassium levels through blood tests about every 3 months. The side effects are tingling fingers and toes which usually occurs after a bike ride and lasts for 15 or 20 minutes. Some days I have it and some days I don't. I had assumed that this side effect was due to a low potassium level. I mentioned this to my doctor as well as my desire to ultimately be off the diuretic and on a low salt diet. He said that the side effect is not necessarily indicative of low potassium levels and is not a dangerous sign. Muscle cramping is the main indicator of low potassium. I have not had this. He also said that a low salt diet is not an option for me because of my exercise level. I need the salt when I sweat. So, for now anyway, I will stick with the diuretic.

Avoiding Caffeine

I recently broke one of my own rules and started reading material on the internet about Meniere's Disease. My main intention was to see if there were many other resources such as this one which gave personal experiences with the disease and allowed feedback from readers. I didn't find many. I also could not avoid following some links and reading the sites. I was once again reminded of how frightening this disease is when you read about it, and how grim the prospects sometimes seem to be. So I am going to try to avoid reading any more literature for a while, because my personal view is that the prospects are not grim if you stay active and follow the advice of your doctor. At any rate, I was again reminded of how common the admonition is to avoid caffeine and alcohol if you have Meniere's Disease. I already stated that I tried both and did not notice a reduction in my symptoms. Well, in thinking further about this I realize that I did not give caffeine avoidance as strict and honest a run as I did alcohol avoidance (which I avoided strictly for two months). I was also reminded that one factor common to all Meniere's sufferers is stress and anxiety. In fact, one sufferer claims that his disease is due entirely to job stress and that when he changed jobs, he was no longer bothered. I agree with the stress link; it certainly fits for me. Therefore, if caffeine (or too much caffeine) can be viewed as a stressor, then it may be true that avoidance would help patients with Meniere's Disease. After all, the effects of too much caffeine are quite similar to those of a panic attack. My daily intake of coffee is about three cups. But starting today I dropped this down to one. I will try to maintain this level for at least two months and will happily report the results on this site.

Exercise

When I saw my doctor last week he asked for a report on my symptoms. I told him that the dizziness had greatly improved and it was no longer the most disturbing symptom. I told him that I thought that my high level of exercise is responsible for helping me adapt well to the dizziness and he agreed with me. I just wanted to point this out. You know, it's spring time. It's sure is nice biking weather.

Teeth-Grinding and Jaw-Clenching

I've known I do these things since my dentist pointed it out several years ago. The tops of some of my back teeth show signs of wear, and my jaw fatigues quickly when I'm at the dentist. She said both of these are sign of teeth-grinding (bruxing) and jaw-clenching. But I hadn't considered a possible link to Meniere's symptoms until my doctor pointed it out last week. He said that these behaviors can increase tinnitus, which is definitely true. If I purposely clench my jaw, my tinnitus increases. So since then I've been conscious of this and have caught myself clenching my jaw, and have tried to stop. It is difficult, becasue in many ways this is an unconscious activity and is often done in one's sleep. I am also seeing my dentist next week to be fitted for a mouth guard, which protects the teeth from the effects of grinding. I do not know if they help reduce grinding in any way, but hopefully I will have an answer to that question in a few months.

Tuesday, April 29, 2008

Non-Drug Treatments for Meniere's Disease

The following are treatments or activities that I have tried, some whole-heartedly, some part-heartedly, to help relieve the symptoms of Meniere's Disease. In some cases I had read somewhere that the treatment helped patients, some were doctor-recommended, and some were just things that seemed to make sense at the time. Some have been a waste of time and money, some have helped greatly.

Chiropractic

I had never tried chiropractic before contracting Meniere's Disease, and don't know much about it beyond the notion that it believes that if the vertebrae are in alignment, the nerves function properly and therefore the body is adequately supplied with blood. My father is a huge proponent of chiropractic, believing that the "treatments" cure just about everything and restore him to good health. Early in my disease I remember reading on a discussion forum several accounts of dramatic improvements in Meniere's symptoms after chiropractic adjustments. So I did some reasearch and found several articles describing the exact adjustment necessary to relieve symptoms. With this article in hand I made an appointment with a local chiropractor. He told me that he had never treated Meniere's patients, but was excited by the article and tried to follow its advice. I saw him 3 or 4 times. I saw no improvements in my symptoms, so I discontinued treatment.

Shortly thereafter I had an appointment with my ENT and mentioned to him that I had seen a chiropractor. He recommended a different chiropractor who had another approach and some experience treating Meniere's patients. The approach is called the Atlas Orthogonal technique, and supposedly targets the first couple of vertebrae. It does not involve twisting or "back-cracking" manipulations, but rather some kind of device that supposedly aligns these vertebrae. I ended up spending quite a bit of money at this clinic and although after each individual treatment I did feel a slight decrease in my dizziness, in the long run I did not detect any permanent benefit and therefore discontinued treatments.

Bottom line: chiropractic did not help me.

Accupuncture

The chiropractor that I mentioned above who practices "Advanced Chropractic" also performed several accupuncture procedures on me. In all cases he consulted a manual to relieve symptoms of dizziness and/or tinnitus. These treaments were quite uncomfortable and provided no change in my symptoms whatosever. It's possible that someone schooled in the art and science of accupuncture, preferrably not an American chiropractor, could do more. But based on my experience, I do not recommend accupuncture for the treatment of Meniere's Disease.

Physical Therapy

My doctor recommended a physical therapist who specializes in balance disorders. I wasn't sure what such a person might do for me, but I tried it anyway. At my first and only visit, she took an extensive oral history and then gave me several balance tests such as closing my eyes and walking a straight line, standing on an unstable surface, etc. At the end of the testing she told me that my performance was at a level that she tries to reach by the end of physical therapy and therefore I did not need it. She told me that she believes that this is due to the extent to which I exercise daily. I will have much more to say about this later. The bottom line for me was that I did not need physical therapy but it likely would have been helpful had I needed it.


Limiting Caffeine Intake

I am a three-cup-a-day coffee drinker and have been for at least 24 years. Good coffee is one of my true pleasures. I had read quite a few times on Meniere's forums and medical pages that some doctors recommend or even require that caffeine intake be eliminated. This was painful to read, but I tried it anyway. If you are used to consuming caffeine and want to stop, you should do so gradually, as you will have bad withdrawal symptoms with a cold turkey approach. Mainly bad headaches that do not respond to pain killers. I tried going down to two cups a day and then one and then none. I am not sure how long I stayed off caffeine but I doubt it was more than a month. I did not notice a difference in my Meniere's symptoms. I am back up to my regular intake of coffee. I should also point out that I do not notice a difference in my symptoms before and after a morning cup. Limiting caffeine did not help me.


Limiting Alcohol Intake

Wherever I found warnings to stop caffeine intake I also found warnings to stop alcohol intake. I am a 2 to 3 drink a day drinker, mainly beer or Irish whiskey. I stopped all alcohol intake for two months. I did not experience a change in my Meniere's symptoms. If anything, they may have been slightly worse. I mentioned this to my doctor, who said that because alcohol is a CNS depressant, it tends to temporarily improve dizziness. I should also point out that my doctor's advice regarding caffeine and alcohol was not to worry about them because they are both diuretics and therefore not detrimental to my main treatment.

Meniett's Device

A Meniett's Device is a machine that delivers small, systematic air pulses to the ear. I had read about it on a few sites, several of which indicated that it can greatly improve one's Meniere's symptoms. It must be prescribed by your doctor and administered by an audiologist. Your insurance may or may not cover it. As far as I could tell, it is not necessarily known why air pulses improve Meniere's symptoms. I scheduled an appointment with the Dizziness and Balance Center for a Meniett's Device fitting, but we were unable to use it because the air pulses made me very dizzy. So I do not have any experience with a Meniett's Device but mention it here because it is a treatment that has supposedly helped some people.


Neuromonic Therapy

Neuromonic therapy is designed to decrease tinnitus, or ringing in the ears. A device is calibrated by a hearing specialist to deliver tones through headphones to the affected ear(s) that have a canceling effect on the perception of tinnitus. These tones are then embedded in music, and the patient wears the device and listens to the music for several hours each day for several months. I have not tried a Neuromonic device yet, but have been on a "waiting list" to receive one for several months. The consensus is that they greatly help to improve the tinnitus, so I am very excited to begin the therapy. I spoke to my ENT about it yesterday, and he said that specific training is required before the device can be dispensed, and the clinic that I use is still waiting to receive the training. Hopefully I will have much more to say about this later.

Tympanostomy Tube

This is a small tube inserted in the eardrum to relieve pressure in the middle ear. It is commonly used to prevent fluid buildup and frequent middle ear infections. It is sometimes used in Meniere's patients with the notion that lowering pressure in the middle ear will help to lower pressure on the inner ear and perhaps relieve symptoms. For adults, the procedure is done by the ENT in the clinic under local anesthesia. It takes about ten minutes and is not painful. First a numbing medicine is place on the eardrum. Then a small hole is created and if necessary, any fluid in the middle ear is removed. Then the tube is placed in the hole. It is about 1.5 mm in size (smaller than a match head). The tube stays in place for several months to several years, depending on the type used, and falls out naturally. The hearing is not affected. I had this procedure done and it did not help me.

Exercise

(!!!***!!!***!!!) I have saved the best for last. And I hesitate to call it "exercise" because that sounds like a prescription for something that you don't want to do. Perhaps "activity" would be a better word. Regardless, my doctor and I believe that my adaptation to Meniere's Disease has been very good, and that my exercise level is likely the reason. Why? The speculation is that the cause of Meniere's Disease, whatever gives us the dizziness, tinnitus, and hearing loss, does not go away. Rather, improvement is experienced because the body adapts to the symptoms over time. And the body is best at adapting to the dizziness part, which is why this symptom consistently shows the most improvement over time. And whatever we can do to help with this adaptation will produce greater, faster improvement.

Exercise has many benefits, but one is that, provided that you are moving your body, it provides constant vestibular stimulation and therefore forces your body to constantly keep itself upright and stable. This is not always easy. Consider the figure skater who learns to spin very quickly in a tight circle for 40 or 50 revolutions and then is able to skate away without falling down. This takes practice. At the beginning of Meniere's Disease, getting up off the couch and walking to the bathroom is very difficult. It takes practice.

I have always been very active, from sports as a child, to weightlifting and running, to my current exercise of choice which is bicycling. Currently I ride to work and back each day, which is about 25 miles total. It takes me about 45 mintues to an hour each way, so I am on the bike for 1.5 to 2 hours a day. I do this year round, consistently. Just about the only thing stopping me from riding is ice, which in the DC area is thankfully infrequent. I have been riding to work for 3 years now. At the beginning it was very difficult and I had to work my way up. Now it is no problem and I'm getting a lot faster. I love it. It's one of the highlights of my day. I should also mention that since I started I have lost 35 pounds and three inches from my waist. I can fix a flat tire in about 10 minutes, and I save my family at least $5000 a year in gas, car maintenance and parking costs. And there's also the environmental friendliness, improvements in mental and physical health, avoidance of traffic and parking headaches, and much more. By the way, if I were to drive to work, it would only take me about 10 minutes less time each way due to traffic and parking. So clearly biking is much more to me than just exercise, and it's not something that I started doing because of Meniere's Disease. In fact, it's more like something that I subbornly continued doing despite Meniere's Disease.

Ok, so why does bicycling help me adapt to Meniere's Disease? I believe it is because I am constantly receiving stimulation as I ride, and am moving my head, and am forced to keep my bike upright and moving forward in a straight line. At the beginning, looking behind me while maintaining a straight line (challenging for anyone) was almost impossible. I even fell a couple of times while doing this. But now it's not a problem. My head is always moving while I'm riding, and I'm always receiving stimulation that is needed in order for me to navigate my bike correctly and safely.

So it stands to reason that any exercise that requires you to move your body through space and keep yourself upright and/or stable would be beneficial. That means walking, running, aerobics, dancing, roller blading, skiing, swimming, tennis, hiking, climbing, soccer, basketball, frisbee, etc. etc. etc. All the fun ones!

What forms of exercise would be less beneficial? In my opinion, those that do not require us to navigate our bodies would be less useful for Meniere's Disease. These would inlcude most of the things that we do at a gym involving equipment, such as weightlifting, treadmill, elliptical, stairmaster, rowing, etc. All the unpleasant ones!

At the risk of sounding too much like an exercise evangilist, I'll stop this discussion here. Except to say that, if anything, get out there and move around!!!!! Oh, and also I'd like to say that bicycling to work doesn't solve ALL the major problems in the world, just the IMPORTANT ones: obesity, pollution, high gas prices, heart disease, depression, traffic congestion, road rage, peak oil and dependence on foreign oil, greenhouse gas emissions, parking.... (I'm only sort of kidding here.)

Thursday, April 17, 2008

Medications for Meniere's Disease

The following is a list of the medications that I have taken or still take for Meniere's Disease, including prescription, over-the-counter, vitamins, and herbals. I have never taken anything without my ENT doctor's approval. I include the medication name and what I think it's supposed to do, observations about effectiveness and side effects, and whether or not I plan to continue taking it.

Dramamine / Bromine / Antivert

These are common over-the-counter medications usually given for nausea and motion sickness. Dramamine and Bromine/Antivert are different chemicals but are similar in nature and apparently related to the drug in Benadryl. They are also usually given to people suffering from vertigo, particularly when nausea and vomiting is experienced. They are not to be taken regularly but rather only in the case of acute symptoms. I took both (not together) during the early stages of Meniere's. I do not believe that they helped me, and did not feel a difference when I stopped taking them. They make you drowsy, which actually might be a good thing early on. If I had been severely nauseated or vomiting, I likely would tell a different story about them. Considering that most of the improvement that Meniere's sufferers experience likely comes from the body's gradual adaptation to dizziness, it is actually detrimental to take these medications over the long term if they mask the vertigo symptoms. The body must experience vertigo in order to overcome it.

SERC / Betahistine

This is an anti-vertigo drug specifically for Meniere's and other balance disorder patients. It has been around since at least the early 1970s. I had read on several Meniere's forums a few personal accounts of the miraculous effects of this drug. Several people reported the total elimination of their dizziness after taking it. Adding to its allure is the fact that it is difficult to get in the United States. I mentioned it to my doctor and he said that he could get it for me from one pharmacy located about 50 miles from my house. I had to have it shipped to me and it cost about $80 for a monthly supply. After the first month I noticed no benefit from taking this drug. I was reluctant to fill the prescription for the second month given the cost and the drug's dubious value, but consulted with my doctor who said that some people have gotten relief. So I tried it for another month, but again did not notice any benefit, so I quit taking it.

Diuretics and low salt diet

Diuretics are a standard treatment for Meniere's Disease, and I have taken them consistently since about a month after onset. These drugs cause you to urinate excess fluids and as such are supposedly helpful for the body to regain or maintain an equilibrium in the fluids of the inner ear. I am not certain why diuretics are appropriate for the inner ear whereas decongestants are appropriate for the middle ear, even though I asked my doctor. Diuretics are also given to reduce blood pressure.

One dangerous side effect of diuretics is that they may cause an electrolyte imbalance, particularly a lower-than-optimal potassium level. Consequently you must get periodic blood tests to monitor your electrolyte levels. The first diuretic I took was a strong one, and I ended up with bad side effects from low potassium after about a month. I remember feeling muscle cramping and joint stiffness that quickly worsened. I called my doctor who said to consume potassium rich foods such as bananas and orange juice and to stop taking the drug. I drank three glasses of orange juice and ate two bananas and went back to bed. After a couple of hours the side effects were gone.

My doctor then put me on a less potent, "potassium-sparing" diuretic called Acetazolamide. I take 250 mg twice a day. I am still careful about my potassium, trying to eat at least one banana and plenty of other fresh fruits and vegetables every day. If I start to feel tingling in my fingers and hands after a bike ride, I know that I need to eat more potassium. One lesson I learned is to turn to your pharmacist rather than your doctor for specific advice and information about your medications. When I mentioned to my doctor the side effects of tingling fingers and low potassium, he said that I should not experience these because Acetazolamide is a potassium-sparing drug, so it must be from something else. But my pharmacist said these side effects are common and that eating potassium-rich foods is advisable.

I cannot honestly say whether or not the diuretics help because I have taken them consistently since my symptoms started. I have asked my doctor about going off them and he strongly advises against it. He said that he has had patients who got better and decided to quit diuretics and subsequently saw a return of their symptoms, in some cases worse than before. I do believe that if one were able to maintain a low salt diet consistently, diuretics would not be necessary. My doctor advised that I cut my salt intake to under 1000 mg a day, which is less than half of our average daily amount. It stands to reason that the benefits of diuretics and a low salt diet would be comparable, as one helps to rid the body of excess fluid and the other prevents it from being retained in the first place.

I tried the low salt diet for about a month but found it very difficult to measure and to maintain and also did not feel improvement beyond just taking the diuretic. Maintaining a low salt diet essentially means staying away from restaurants and all prepared foods and snacks. It also means cooking your food separetely from your family's, or remembering to salt theirs at the end of the preparation, after you have already served yourself. Furthermore, I love salt. Unsalted food is just no fun.

That said, I have a feeling that I will try the low salt diet again, this time in earnest. At some point I would LOVE to be off all prescription medication and can foresee an immense satisfaction coming from managing the disease myself rather than relying on medication.

Valium

My doctor prescribed a low dose a valium early in the disease to help with the vertigo attacks. I did not feel that the valium helped much and therefore did not ask for another prescription.

Vitamins

I read one nutritionist's view that Meniere's syndrome could result from a deficiency in certain B-complex vitamins. I purchased vitamins based on these recommendations and have been taking them ever since. Although I cannot compare my present condition to a time when I had Meniere's Disease and did not take the vitamins, I do not believe that they are helping me. I have decided that I will not buy more once they run out.

Herbs

Most alternative medicine practitioners believe that gingkgo biloba improves blood flow and stimulates neuronal activity. I have seen it recommended specifically for Meniere's patients. I took it in capsule form for about two months and experienced no benefit, so I quit taking it.

Anti-Depressants

I currently take 150 mg of Effexor daily. I started this about one month after onset of Meniere's. Effexor is a selective serotonin reuptake inhibitor (SSRI), similar to Paxil and Zoloft. It is used to treat anxiety and mild depression, both of which I was feeling in abundance at the beginning of this illness. I saw a counselor who diagnosed anxiety and episodic depression brought on by the Meniere's. (A psychiatrist must prescribe anti-depressants.) Although my ENT has not specifically recommended anti-depressants, he has indicated that he thought that it was a good idea that I was taking them.

I believe that the Effexor helped me greatly in the first four months or so of this disease. I recall one episode several weeks after onset where my wife was to leave town for a two day business trip, leaving me to take care of the kids myself. I recall feeling a nearly crippling level of terror at the prospect of having to do this, despite the fact that at this point my attacks were infrequent and manageable, and I could always have called a friend or neighbor if necessary. Yet I was still nearly catatonic with fear and apprehension. At this point I knew something was wrong and that I would likely benefit from counseling and medication.

Now that my Meniere's has stabilized and I am living a normal and active life, I do not feel that I will need to continue taking the anti-depressant for much longer. I feel as though I will be able to function just as well with regular counseling in place of medication.

Summary

The only drugs that I currently take and that I believe have helped me are the diuretic and the anti-depressant. I believe that the diuretic is useful but could be replaced by a rigorous low salt diet. I believe that the anti-depressant was most effective for me during the first few months of the disease and is becoming less and less necessary as the disease stabilizes and I am able to identify my own effective coping mechanisms.

Wednesday, April 16, 2008

The First Three Months - Attacks, "Diagnosis" and More Attacks

A few days after my battery of hearing and balance tests, I attempted to resume my normal life as best I could, which includes working as a computer programmer and web developer for a small research company in Alexandria, VA; and all the responsibilities that come with being a husband and father of two toddlers, one just about to turn three and the other about a year-and-a-half old. I believe in total I missed four days of work at the beginning of this ordeal.

I have always been very physically active, and have ridden my bicycle to work since April of 2005 (two years before Meniere's onset), a distance of about 12 miles each way, or about 25 miles total each day. Northern Virginia has an excellent series of paved bike trails, and luckily about 90% of my trip is on them, leaving only a short bit in the dreaded traffic. By the time the Meniere's hit, I was a pretty solid biker, having lost about 35 pounds and gained quite a bit of speed and strength since I started. It takes me from 45 minutes to an hour for the total trip, most often more dependent on traffic lights and trail traffic than anything else (interestingly, this is only about 10 minutes longer than if I were to drive to work). And I have a strong reputation for being "hard core" about the bike commuting, riding year round in all weather conditions and at all times of day.

This biking background information is provided to make two points: first, I wasn't about to stop biking to work if possible, and two, I strongly believe that my continued high level of physical activity has been instrumental in my ability to handle this disease and carry on a relatively normal life. I'll explain why later.

Attacks

The first several months of Meniere's Disease are characterized by attacks of severe dizziness, hearing loss, and tinnitus that are similar in nature to the initial attack but less severe. Mine began about two weeks after the initial one. These attacks are nearly as terrifying as the first because you do not expect them. Remember at this point I still did not know what was wrong with me. They are disheartening because you had been feeling progressively better until they occur. And they make you fear that perhaps this time it will be worse than the first, or you are getting worse overall, or you had just done something you shouldn't have done but have no idea what that was, etc.

For me an attack started with the sensation of a hearing drop and tinnitus increase in the bad ear. About five to ten minutes after this, the dizziness would start. The dizziness would not be as bad as the the initial attack, but bad enough that you had to stop what you were doing and sit or lie down. If I were in my office, I would usually close the door and lie down on the floor. If I were home, I would just go to bed. On the unfortunate but rare occasions that attacks hit me on the way to or from work, I would have to stop and get off the bike and sit or lie on the ground for twenty minutes or so. At this point the dizziness would usually become less severe and I could continue riding. If I were lying down, I usually found that all symptoms of the attack would disappear in two to three hours. That is, the terrible hearing would go back to being just bad, the screaming tinnitus would go back to an annoying buzz, and the severe and debilitating dizziness would go back to the familiar instability while moving. The attacks were unpredictable and could not be curtailed or shortened by any behavior or medication.

Changing nature of attacks over time

I had distinct attacks such as this for the rest of May and all of June and July, 2007. At first they seemed to occur once every week to week and a half. The severity and duration seemed to remain about the same. Starting some time around the end of June and first part of July (two months after onset), they began to occur more frequenly and were less severe. They started occuring every few days, then every other day or so. Eventually I was having at least one and sometimes two attacks a day. I don't know if it was because I was used to them by this point or if the severity was truly lower than the early attacks, but by this time I was not nearly as bothered by them as in the early stages. Often I could continue riding or working at my computer, or would only need to lie down for a half hour or so.

Diagnosis

During these first couple of months I was seeing my ENT every week to two weeks. Once the attacks became an established pattern my doctor started to believe that I had Meniere's Disease. These attacks are one of its hallmarks. But as I've mentioned before, Meniere's Disease is nebulous and there is no way to diagnose it other than by the pattern of symptoms. It really is strange to hear your doctor say to you at nearly each visit "I think you have Meniere's Disease".

But the good thing that comes with this "diagnosis", such as it is, is the ability to begin talking to your doctor about patterns, effective treatments, what other patients have experienced, etc. My doctor is apparently one of the Meniere's experts in the DC area and said he has had at least 500 Meniere's patients over the course of his career (he is now near retirement). That seemed like a good thing to me at first, because I thought that we would really be able to make some progress on this thing now that we supposedly knew what it was. As it has turned out, and as you'll see in later discussions, this doesn't help much. Meniere's is just so variable from patient to patient that there is not much that a doctor is able (or willing) to discuss other than vague generalities.

The other thing that this "diagnosis" provides is a set of key words that you can now use for web searches. I now realize that this is not necessarily a good thing, at least in the early stages of the disease. If you are reading this posting then you no doubt have searched the web for Meniere's Disease information many times. I don't do it any more. I have yet to find anything on the web other than discussion forums that have helped me in the slightest. And in fact, most of the information has only served to confuse me and/or make me feel more frightened than I already am. Sometimes when I read something I think "wow, is this really what I have? Because it sounds awful when I read it, but doesn't really seem that awful in real life." So I tend to go back to thinking about real life rather than what is posted on a web site.

I will admit that web searches have exposed me to a number of treatments that others have recommended and that I, as a desperate person, have therefore wanted to try. And I have plenty to say about them all (later). These include medications such as SERC (betahistine), antivert, diuretics, herbals, and anti-depressants as well as chiropractic, vitamin therapy, natural herbs, a Meniett's Device, Neuromonics, and physical therapy. In a later post I'll tell you what each of these has done or not done for me.

One long attack?

At some point in early August I had an attack that never seemed to go away. This sounds worse than it is, because at this point the attacks, although more frequent than in the first month, we much less severe. But this one seemed to stay around such that my hearing and tinnitus were noticeably worse than when I wasn't having an attack (but less than during an attack in June or July), and I was pretty unstable on my feet, but able to get around ok. I didn't drive much at this point because it made me feel dizzy, but I still rode my bike (carefully).

In mid August my family and I drove to Myrtle Beach, SC to meet my wife's sister and her family for a short vacation. Myrtle is about an eight hour drive from our house. Unfortunately for my wife I was unable to drive because I was too dizzy. Overall I felt pretty stable and was able to schlepp myself from our little condo to the beach every day. I had a nice time and the only thing that really bothered me was standing at the water's edge. When a wave would come in and then go back out again, the sensation of seeing the ground unstable beneath my feet made me very dizzy.

By September I was still stable and the symptoms, mainly the dizziness, had improved considerably. We took a trip to my parents' house in Illinois in early September (a 16 hour drive from our house) and I was able to drive most of the way without a problem. At that point I had reached a milestone I believe, because I felt roughly as I do now (mid April, 2008). The hearing loss and tinnitus had stabilized and the dizziness had improved (or rather, I had adapted to it) to such a degree that I was able to resume most activities without a problem.

Hearing and Balance Tests

As luck would have it, next to my ENT's office is the Professional Hearing Services Dizziness and Balance Center. My doctor prescribed a battery of tests from this clinic.

Hearing test

I have taken at least three hearing tests since the onset of Meniere's Disease, and all have produced the same results. The hearing in my good ear (right) is normal, and the hearing in my Meniere's ear is compromised. At the lower and middle frequencies hearing is nearly normal, but as the frequency increases for the higher portion of the mid-range to the high range, my hearing drops off rather sharply. This is consistent with my personal observations. If I cover my good ear, I have trouble hearing overall. Sounds are muffled and it is difficult to make out speech. And I cannot hear things like the beeping of the microwave or a cell phone ringing in the distance.

Loud noises of all frequencies irritate my bad ear. When my children (ages 3 and 1.5) scream, which they often do (for fun), it is very painful. Other loud noises such as a garbage truck passing me on the street can also be painful. They do not hurt in the classic sense, but sound very irritating and distorted, like the feeling you get at a loud music concert.

But I should point out that I can still hear in my bad ear. I can hold the phone to this ear and carry on a conversation. I believe that the further a sound source such as a human speaker is from the ear, the more dramatically my ability to perceive drops off, so that phone conversations are not a problem because the phone is directly against my ear whereas a speaker from several feet away is difficult to perceive. Although I have some trouble telling from which direction a particular sound came, I can still do so adequately. I am a bike rider (much more about this later) and thankfully can still hear a car approacing from the left as I approach an intersection.

Nystagmography

The second test I received was Electronystagmography (I think), in which electrodes monitored my eye movements while stimuli were introduced to my ears that caused me to be very dizzy. I lay on my back and wore some kind of goggles which monitored my eye movements. The tester then sprayed water steadily into each ear for two mintues, first cool water and then warm water. The water would drain out immediately. The water made me very dizzy, and they monitored my eye movements during this dizziness. They told me to tell them a story during the water stimulation in order to take my mind off of how unbelievably uncomfortable this was. It was very, very unpleasant. It was all I could do to speak at all during the water, let alone to remember the story I was attempting to tell. After this testing was finished, I kindly asked the audiologist to please never ever do that to me again.

Evoked Potentials

The final test was some kind of evoked potential, where electrodes were placed on my scalp, face and neck, and I wore headphones which transmitted various static and tonal sounds. The machine presumably measured my neuronal reaction to these stimuli. This test was not necessarily unpleasant, and was a veritable party after the last one.

Results

So what was the diagnosis (verdict)? Nothing, really. I'm glad my insurance covered most of the cost of these tests, because they really didn't tell us much other than to confirm that my hearing was damaged and my vestibular system on the left is in fact under some kind of stress. Objective proof of the obvious, I suppose.

Thursday, April 10, 2008

Meniere's Disease: Onset and First Few Days

Onset

On the morning of May 2, 2007 I awoke at 5:00 with a splitting headache. I went downstairs, took some ibuprofen, and sat on the couch. Suddenly I was slammed by a tornado inside my head - a whooshing, screaming, buzzing torrent, as if I'd stuck my head out the window of a 747 at 30,000 feet. I was so dizzy I couldn't stand up. This lasted about 10 miserably long seconds, after which I fell back on the couch, heart racing and terrified. What the hell was THAT and when the hell is it going to happen again? Maybe it won't. It did. And this time it didn't go away. I tried to walk but couldn't. I thought I was having a stroke or something similar. I don't remember exactly how things transpired after that, but I know that I crawled up the stairs to the bathroom where I had heard my wife go earlier. I knocked on the door and told her something was wrong and I was so dizzy that I couldn't stand up. She helped me lie down on the couch and then called an ambulance.

Very shortly thereafter several paramedics arrived and my wife explained the situation to them. Their main objective was to make sure that I wasn't about to die, so they hooked me up to a portable EKG and monitored my vitals. I remember that they had to help me up on the stretcher and that the short trip from my living room to the back on the ambulance on the stretcher was almost intolerable. The only thing I remember about the ambulance ride is that I felt I had to sit forward with my head down. I also remember that facing the back of the ambulance while it was moving was just horrible. I asked them if they could turn me around but they said they couldn't. I told them that facing backwards made it really difficult and they told me that it was therefore going to be a long and unpleasant ride to the hospital. Thanks a lot.

I spent about three hours in the ER, during which time they did a CAT scan to rule out a brain problem, a blood test to make sure I wasn't on drugs, and a whole lot of nothing else. Mostly I just sat on a bed and waited and tried not to vomit or go insane. I couldn't lie back or relax or even close my eyes for very long because it made me feel too dizzy. I had to focus my eyes on something, which was difficult because the something kept moving.

At last the doctor came in and told me that she thought that I had "positional vertigo", didn't really know why, and told me to see an ENT (Ear, Nose and Throat doctor) as soon as possible. I think they also gave me some dramamine. My wife was able to get me an appointment with an ENT for the following day. She wheeled me to the car in a wheelchair because I couldn't walk, and we limped home. I'm pretty sure I spent the rest of that day and night on the couch, finally able to sleep because the drowsiness from the medication had trumped the vertigo, mostly. I also remember feeling that I couldn't hear very well out of my left ear and that it was ringing loudly.

I have to point out that even though I most likely realized after my ordeal at the hospital that I wasn't necessarily about to die, this whole thing was nevertheless terrifying. I don't want to be too dramatic here, but questions like "will I ever be able to stand up and walk again?", "is this permanent?", "am I going deaf?", "will I be able to chase my children around the house again?" were never far from my mind.

First Visit to ENT

ENTs apparently specialize on particular aspects of ears, noses, and throats, and I was lucky enough to have found one whose specialty was hearing and balance problems. I honestly don't remember much about the visit except that I was able to make it from the waiting room to the exam room myself, but had to hold onto the wall while walking. I also remember that the doctor did a few "field sobriety" type tests, all of which I failed miserably. He also had me take a hearing test, which showed that my hearing in the left ear was poor, particularly in the upper range. When he told me this I immediately asked if it would come back. He seemed annoyed and said "I don't know."

He was very non-committal, of course, and I don't think he even mentioned Meniere's Disease as a possibility. It was just too early to tell. He did, however, say that he thought it could be viral and that he wanted me to take anti-viral and steroid medication. He said if it was viral and it was in an early stage, this combination of drugs may be able to help curtail some of the damage.

He also told me that I could continue taking dramamine to try and alleviate the dizziness, and that I should schedule an appointment at the nearby "Hearing and Balance Center" for a battery of more extensive tests.

First few days

I don't remember many specific details of the first few days with Meniere's Disease. Of course, at this time I didn't know that I had Meniere's Disease. I know I was frightened, concerned for the future, very sleepy all the time, and unbalanced. You see the word "vertigo" often associated with inner ear disorders such as Meniere's Disease. I view vertigo as a spinning of the world around you, much like the feeling of going to bed too drunk. The bedspins. I did not have this type of vertigo, fortunately. When I was not moving around, particularly moving my head, I was not dizzy. I was only dizzy when I moved my head or tried to walk. Thankfully this made sleep possible.

Noticeable hearing loss and tinnitus have been present since the start of Meniere's Disease for me. I do not recall that these symptoms fluctuated in severity but I do recall that they were strong enough to always be noticeable.

By this point I had started taking the anti-viral and steriod medications (prednisone), about which I had some degree of optimism.

I don't recall things improving noticeably over the next several days, but at some point I decided that I needed to get up and try to move myself around and maybe even get back to some semblance of a normal life. Walking was difficult. Mostly I walked slowly, stumbled frequently, and used the wall or my wife for support.

MRI

My ENT also prescribed an MRI to rule out any brain issues such as tumor or vascular problems. I am not particularly claustrophic as a rule so this was not too uncomfortable. You are placed on your back and slid into a large metal tube which administers the test. My MRI was on my head only, so I was only in the tube from the shoulders up. I would imagine that a full body MRI would be much more uncomfortable.

My doctor said that the radiologist noted what appeared to be a small shadow in one reagion of the MRI. He said that this was likely an artifact and did not represent something real. He said that the only way to confirm this would be to get another MRI. I was not concerned so I did not request another.

Wednesday, April 9, 2008

What is Meniere's Disease?

The honest answer to this question is that nobody knows for sure what Meniere's Disease is. They definitely don't know the cause, but I'll talk about that later. I'm not going to quote the medical books and sites on the definition of the disease, but rather paraphrase them by saying that Meniere's Disease is probably an imbalance in the fluids of the inner ear, which affects the mechanisms for hearing and balance. This is not to be confused with ear infections, which typically involve the middle ear and do not directly touch the hearing and balance mechanisms.

The main symptoms of Meniere's Disease are dizziness, hearing problems, and tinnitus (a perceived ringing or buzzing sound). All of these symptoms vary in intensity and duration over time, with the early stages characterized by "attacks" of limited duration but high intensity, and later a stabilization followed by possible improvement of some symptoms (usually the dizziness) and gradual increase in others (usually hearing loss and tinnitus). I stress again that this pattern will certainly not apply to every sufferer. Apparently some have only a few attacks throughout their lives and are otherwise not bothered, whereas others are severely compromised for long periods of time. This wide range of experience and lack of observable cause have led some to call Meniere's a syndrome rather than a disease. The diagnosis is more about what you clearly DO NOT have than what you do. You don't have a brain tumor, you aren't on drugs, you don't have a concussion, you don't have an infection...

One medical article I read said that the most important thing to remember about Meniere's Disease is that it lasts the entire lifetime. I disagree. I don't actually see the benefit of remembering this AT ALL. Unless of course you want to feel worse. I would say that the most important thing to remember is that Meniere's Disease is not the end of the world and that it's possible if not likely that you'll get through it just fine.

I had about 4 months of relatively severe attacks that varied in friequency and duration followed by a 2 to 3 month period of on-going but moderately severe symptoms followed by a stabilization, which I am currently experiencing. Currently (one year after my first attack) I have a moderate hearing loss, aggravating tinnitus, and some dizziness. But none of these are preventing me from functioning normally. I will discuss this in more detail later.

Cause(s)?

This is a mystery. The only thing that my doctor has ever said regarding cause is that Meniere's may be likely to follow an upper respiratory infection. I will admit that mine started in the spring following a rough winter in which I was sick often and seemed to have a cold and especially a dry cough for months. But then again, who hasn't experienced something like this before?

As you may have already discovered for yourself, two useful tips about living with Meniere's are to avoid speculation about the cause and to avoid reading too much medical literature about it. These will only make you feel worse.

The purpose of this site.

I am a 42 year old married man with two young children and I've had Meniere's Disease in the left ear since May, 2007. If you have found this site you are likely a fellow sufferer or know someone who is. You are likely concerned, frightened, and maybe even depressed. You are probably also overloaded with information and are feeling the frustration that comes with an unconvincing diagnosis of a vague and amorphous yet frightening disease.

The purpose of this site is not to recommend treatments or to provide an information repository or the latest news about Meniere's Disease. There are already plenty such sources readily available to everyone. Furthermore, Meniere's Disease can vary quite dramatically in severity and duration from person to person. The purpose of this site is to provide one sufferer's account of the disease and a friendly place where others can read and share personal information and hopefully benefit from the experience. Although things like symptoms and treatments will surely be mentioned in the discussions found on this site, there is no attempt to cite "facts", reference articles, or provide lists of hyperlinks. The perspective here is that you don't need more information about Meniere's Disease; rather, you need to connect with others who suffer and whose stories may help you. You also need the opportunity to share your stories, questions, opinions, and complaints.

The title of this forum is "Meniere's So What?". This is not to trivialize the disease or to suggest that recovery is simple or even possible. Many people are dramatically affected by the disease for a long period of time. And if you have it then you know that the notion of "recovery" is more of a continuum than an end-state. For me, Meniere's Disease is pretty awful. At the beginning it's terrifying. Then it's just horrible. After that it becomes more of an obstacle with a healthy "thorn-in-the-side" component. (I hope I'm not being too technical.) But you know what? Eventually, I dare say, it might become tolerable and maybe even just annoying. And if you think about all the other things in life that are just barely tolerable at worst and just annoying at best, well, then, maybe it's really not THAT bad.

I'm trying to be careful here, very careful, because I REALLY don't want to trivialize Meniere's Disease. Six months ago I definitely did not feel the way I do about it now. Six months ago my Meniere's Disease was still in the "horrible" stage. But now it's not. I hate it, and I'd really, really love for it to go away forever. But you know what? It's not stopping me from doing anything I want to do, I'm a happy person, I live a normal and very active life. So, at some point, my fervent wish is for all of us to be able to say "Meniere's? So what!"