Now there's a juicy title, no? My posts have been few and far between owing largely to the merciful fact that my Meniere's has not changed for me in years. But I know that this is not the case for many others. I have decided to post to the blog when I have something of substance to offer beyond the occasional symptom, or lack thereof, update.
When my symptoms started I was taking the drug Effexor for anxiety. It is one of several SSRIs that I took for anxiety for about two years when I was in my mid 30s. I no longer take these drugs and wish I never had, but that's another story. I feel they are beneficial to people with clinical depression for whom no other remedies help, but for those who have generalized anxiety there are far more optimal and less dangerous treatments. At any rate, during one of my recent, twice yearly visits to my family in the Midwest I noticed that a close family member was having trouble hearing me. She is younger than me. She was aware of the problem but hadn't seen a doctor. At our last visit she told me that she finally had seen a doctor and that she has been diagnosed with a degenerative disease of the middle ear and that accounts for her hearing loss, which is significantly worse than mine. She said that the doctor said that there is little that can be done until the hearing loss gets to a certain point and then surgery might be an option.
This family member is also taking Effexor and has been for several years, also for anxiety. It occurred to me that it is probably not coincidental that both of us suffered significant diseases of hearing and significant hearing loss while taking Effexor. It's possible but doesn't seem likely. She does not have Meniere's and I know of no other family member with comparable diseases of hearing. I don't think genetics alone explain our problems.
There are two conversations to be had here, one concerns when it is appropriate to prescribe a powerful, brain-altering medication such as an SSRI and whether it might be reckless for a health professional to do so in patients whose problems may be better addressed without dangerous drugs. The second is whether or not Effexor is an ototoxin. The second is the only appropriate conversation to be had here. My days of SSRIs are far behind me, thankfully, and I would certainly counsel anyone to strongly consider their options if they have been prescribed them. But as for the second question....
These days I resist the urge to web search, or "Google", anything medical. It just gives me too much stress and anxiety. I haven't looked for or even thought about anything Meniere's-related on the internet in ages. It's painful and horrifying. Probably also misleading. So I won't pummel you with web results on "effexor and hearing loss" beyond the tantalizing tidbit that I guarantee that there is plenty of information out there on the subject, largely from sufferers posting to discussion forums. I leave it to you to look into it if you are interested, and to strongly consider your own decisions about the medications you are willing to take. For my own part, I don't want to leave this here. I do want to pursue it, but I'm not sure how. I will probably start by broaching the subject with my doctor (not my ENT!), who is one-of-a-kind in that she resists prescribing medication if possible and is quite wary of Big Pharma.
Any suggestions on where else to take this information? Anybody else had a similar experience?
Monday, October 13, 2014
Wednesday, July 3, 2013
Status update after a very long delay
I haven't posted anything to this blog for almost three years now. But during this time several people have found the blog and have expressed an interest in the status of my Meniere's Disease. They have also been very supportive and encouraging that this is a useful body of information. I haven't posted because, I am thrilled to report, I have not had any symptoms of Meniere's Disease since some time in 2009. I recently received a comment from a woman who said her husband has Meniere's Ttat has been getting progressively worse and wondered if I had any updates. Because of her inquiry I was compelled to post that no news is good news in my case and it might be helpful for those of you who are experiencing this horrible disease that there can be hope.
For the most part I live a completely normal life now. I have no attacks and haven't for several years. It does make me nervous to even think about Meniere's Disease. I was left with a 50% hearing loss in the affected (left) ear, only the high frequencies. So I can hear, can even hold the phone up to that ear and understand what is said. But if someone whispers into the ear, no matter how loud, I can't hear it. I can't hear the "s" sound at all. I have bad tinnitus and fairly poor balance, and acoustic sensitivity, but... I'll take it!
As I write this I almost feel guilty because I know many others have gone through worse and are still going through worse. I don't think there's anything in particular in my behavior or that of my ENT doctor that I can point to as instrumental in my "remission" or "burn out". I haven't taken any medication for Meniere's in years. I used to take a daily diuretic but finally realized it was probably doing nothing for the condition and, under my doctor's protests, stopped. He said something like "we don't really think it's helping but you don't want to stop and then have the symptoms return do you?" What kind of health care is that?
I've remained physically active throughout the disease and to this day. I'm a daily bike commuter (15 miles each way to work) and do daily calisthenics. I think the exercise has helped tremendously and would certainly suggest that it be a part of everyone's life.
I hope that my case gives you some hope. I will try to continue to post to the site but one thing I have wanted to avoid is a topic shift. Since I don't have anything else (much) to say about Meniere's (except to commiserate with others) I want to avoid being tempted to post about other things. This is, after all, a blog about the experience of Meniere's.
Hang in there those of you who are suffering. I can't promise when it will get better but for me, thankfully, it has, and I'm roughly back to normal.
Oh, another thing I should mention... a couple of years ago my ENT (a really great one in the Northern Virginia area called Josef Gurion) noticed a problem on the eardrum of my non-Meniere's ear. It's called cholesteatoma, and is some kind of a cyst that gets worse if not surgically treated. I had the surgery and it was successfully removed. It was a 3 hour affair and required him grafting tissue from the back of my ear onto the eardrum where the thing was. Recovery was hell, as I couldn't hear out of that ear at all and was left with my Meniere's ear for all of my hearing. But I did recover and that ear is back to number one. He's a great doctor and I'm quite thankful.
My jaw pain has also stabilized to the point that I only wear the oral appliance at night. I still have stiffness and am still convinced that this is directly related to the perception of tinnitus if not worse problems. I think neck exercises and therapy would be a good idea.
Another thing I have become very interested in over the last couple of years is the so-called "Paleo diet" and its health benefits. It's a way of eating that mimics pre-agricultural humans. You avoid artificial food, sugar, grains, legumes, and a host of other things that entered the diet after about 20,000 years ago. It's a weight loss tool to be sure but the evidence is starting to become quite overwhelming that it is beneficial for a lot of other maladies. I haven't been able to convert completely but I am trying. I am not saying that this will cure Meniere's, but I do feel confident that it is a very potent way to improve one's overall health and is so compelling that it deserves attention.
Some other things you may be interested in:
I drink about 2-3 cups of coffee a day and have maintained this habit for a very long time
I drink alcohol moderately but am working on reducing this
I don't think either of these behaviors has affected my condition.
One last thing: my Meniere's came on like gangbusters, out of the blue, like a shot in the face. For some it starts subtlely and progressively gets worse. Mine started full bore and, although the attacks became more frequent, they were not necessarily progressively worse. I don't know if this has anything to do with my (what appears to be) relative short disease cycle (knock wood) or not but I think it deserves mentioning.
Good luck and please add your comments and suggestions for additional posts. Hang in there!
For the most part I live a completely normal life now. I have no attacks and haven't for several years. It does make me nervous to even think about Meniere's Disease. I was left with a 50% hearing loss in the affected (left) ear, only the high frequencies. So I can hear, can even hold the phone up to that ear and understand what is said. But if someone whispers into the ear, no matter how loud, I can't hear it. I can't hear the "s" sound at all. I have bad tinnitus and fairly poor balance, and acoustic sensitivity, but... I'll take it!
As I write this I almost feel guilty because I know many others have gone through worse and are still going through worse. I don't think there's anything in particular in my behavior or that of my ENT doctor that I can point to as instrumental in my "remission" or "burn out". I haven't taken any medication for Meniere's in years. I used to take a daily diuretic but finally realized it was probably doing nothing for the condition and, under my doctor's protests, stopped. He said something like "we don't really think it's helping but you don't want to stop and then have the symptoms return do you?" What kind of health care is that?
I've remained physically active throughout the disease and to this day. I'm a daily bike commuter (15 miles each way to work) and do daily calisthenics. I think the exercise has helped tremendously and would certainly suggest that it be a part of everyone's life.
I hope that my case gives you some hope. I will try to continue to post to the site but one thing I have wanted to avoid is a topic shift. Since I don't have anything else (much) to say about Meniere's (except to commiserate with others) I want to avoid being tempted to post about other things. This is, after all, a blog about the experience of Meniere's.
Hang in there those of you who are suffering. I can't promise when it will get better but for me, thankfully, it has, and I'm roughly back to normal.
Oh, another thing I should mention... a couple of years ago my ENT (a really great one in the Northern Virginia area called Josef Gurion) noticed a problem on the eardrum of my non-Meniere's ear. It's called cholesteatoma, and is some kind of a cyst that gets worse if not surgically treated. I had the surgery and it was successfully removed. It was a 3 hour affair and required him grafting tissue from the back of my ear onto the eardrum where the thing was. Recovery was hell, as I couldn't hear out of that ear at all and was left with my Meniere's ear for all of my hearing. But I did recover and that ear is back to number one. He's a great doctor and I'm quite thankful.
My jaw pain has also stabilized to the point that I only wear the oral appliance at night. I still have stiffness and am still convinced that this is directly related to the perception of tinnitus if not worse problems. I think neck exercises and therapy would be a good idea.
Another thing I have become very interested in over the last couple of years is the so-called "Paleo diet" and its health benefits. It's a way of eating that mimics pre-agricultural humans. You avoid artificial food, sugar, grains, legumes, and a host of other things that entered the diet after about 20,000 years ago. It's a weight loss tool to be sure but the evidence is starting to become quite overwhelming that it is beneficial for a lot of other maladies. I haven't been able to convert completely but I am trying. I am not saying that this will cure Meniere's, but I do feel confident that it is a very potent way to improve one's overall health and is so compelling that it deserves attention.
Some other things you may be interested in:
I drink about 2-3 cups of coffee a day and have maintained this habit for a very long time
I drink alcohol moderately but am working on reducing this
I don't think either of these behaviors has affected my condition.
One last thing: my Meniere's came on like gangbusters, out of the blue, like a shot in the face. For some it starts subtlely and progressively gets worse. Mine started full bore and, although the attacks became more frequent, they were not necessarily progressively worse. I don't know if this has anything to do with my (what appears to be) relative short disease cycle (knock wood) or not but I think it deserves mentioning.
Good luck and please add your comments and suggestions for additional posts. Hang in there!
Sunday, April 5, 2009
The Perception of Tinnitus, Jaw Pain, and Stress Reduction
To quickly summarize my story, I've had Meniere's Disease (MD) in the left ear for almost two years. It came on like gang busters, gave me about a year of hell, and now seems to have (sort of) fizzled out. I'm left with a marked hearing loss in the upper ranges, loud tinnitus that is always present but varies in severity, occasional dizziness and instability, and a constant state of being FREAKED OUT (if you'll pardon the technical terminology). But THANKFULLY, no vertigo attacks for quite a while now. I feel that I've been much, much luckier than many victims of this dreaded "disease". And I may be in for a bad ride ahead, I know. But for now, I'm ok. The only thing my ENT (Ear, Nose and Throat doc) has consistently had me do is take a mild diuretic called Acetazolamide (Diamox). I had taken 500 mg/day since about August of 2007. I was also taking an anti-depressant called Effexor (which is an SSRI, or a Selective Serotonin Reuptake Inhibitor) for anxiety, which had been a problem for me before MD hit me, and my ENT told me to stay on this drug. So those are the two consistent "prescriptions" from the two ENTs I have seen. Take these two drugs.
As I explained in my last post, I suspect that my MD is in some kind of remission and that these drugs are no longer helping me, so I have stopped taking them. It has been over a month now and my symptoms have not gotten worse or changed. They are: constant tinnitus that is usually quite loud, a noticeable hearing loss in the upper range (if I cover my good ear, I can't hear the phone ring, but can hear the TV, for example), hyper-sensitivity to high-pitched sounds, occasional dizziness and instability, and an unshakable dread that it's all coming back again some day (but that's for another discussion). I also have, and have had for several months, what feels like a low level pain in the muscles of my jaw on the side of my MD.
All of this has gotten me to start thinking about things in a different way. Aside from the fact that doctors, even specialists in MD (my first ENT was a "Meniere's Specialist" and had over 500 MD patients. He has now retired.) know very little, only really throw drugs at you, and are, at best, sympathetic. Maybe the drugs help. Maybe they help some people. Maybe they helped me. I don't know, and neither do the doctors. We can all agree that this is the case, and that's just the way it is. It does not mean that we should not do as the doctors say. I have followed my doctors' advice diligently during this ordeal until it became clear to me that I may not need to any more.
But it also means that we are somewhat alone here, at least as far as having an "expert" on our side who understands our disease but does not also have it, and can dispense aid. So we need to take matters into our own hands. Many MD sufferers already do this from what I can tell in reading the forums. Things like herbal treatments and chiropractic are quite common.
What has undeniably helped me during this ordeal? The two things that I can honestly point to are regular exercise, and talking / typing with others, both the afflicted and the non-afflicted, in an atmosphere that feels sympathetic.
What's this? Stress-reduction. What else can I say about this? If I don't get my bike rides in, my MD symptoms are worse. If I'm stressed about something (I have two toddlers and have recently been laid off, so that should give you some example), my tinnitus is worse. If I don't get enough sleep (which is usually), I'm dizzier. I could keep going forever here, and I'm sure I'm preaching to the choir.
So all of this has gotten me to another path. I don't intend to scrap everything else. At my next ENT appointment, for example, I intend to discuss how I have discontinued the drugs and also talk about my jaw pain, etc. But aside from this, I am planning to attack this disease in a new way, from the standpoint of reducing stress and being happier and healthier. I have a feeling that if I can get control of stress, my MD, and any other (related?) problems, such as anxiety, migraines, insomnia (all of which I have), will be... ??? Not sure how to finish that sentence. Maybe "much more tolerable"? "In context"?
I've recently read (and am now re-reading) a book called "The Relaxation Response". It was written by a cardiologist a couple of decades ago and has recently been revised. It is, essentially, meditation and its benefits from a medical perspective. I will not summarize it here, but highly recommend that you read it if you are interested. I got a new copy in paperback for about $5. I will just say that this book has gotten me very excited about helping myself. It hasn't fixed my MD or anything else yet, but it sure has suggested a promising route that I should take to help fix this myself.
I'm not going to start pontificating about something that I have only begun to study. But I will end by saying that I am sure that getting control of stress and anxiety in a "natural" way will probably be the best thing I will have done for my Meniere's. I hope that this is true, and I will keep you posted on the progress.
As I explained in my last post, I suspect that my MD is in some kind of remission and that these drugs are no longer helping me, so I have stopped taking them. It has been over a month now and my symptoms have not gotten worse or changed. They are: constant tinnitus that is usually quite loud, a noticeable hearing loss in the upper range (if I cover my good ear, I can't hear the phone ring, but can hear the TV, for example), hyper-sensitivity to high-pitched sounds, occasional dizziness and instability, and an unshakable dread that it's all coming back again some day (but that's for another discussion). I also have, and have had for several months, what feels like a low level pain in the muscles of my jaw on the side of my MD.
All of this has gotten me to start thinking about things in a different way. Aside from the fact that doctors, even specialists in MD (my first ENT was a "Meniere's Specialist" and had over 500 MD patients. He has now retired.) know very little, only really throw drugs at you, and are, at best, sympathetic. Maybe the drugs help. Maybe they help some people. Maybe they helped me. I don't know, and neither do the doctors. We can all agree that this is the case, and that's just the way it is. It does not mean that we should not do as the doctors say. I have followed my doctors' advice diligently during this ordeal until it became clear to me that I may not need to any more.
But it also means that we are somewhat alone here, at least as far as having an "expert" on our side who understands our disease but does not also have it, and can dispense aid. So we need to take matters into our own hands. Many MD sufferers already do this from what I can tell in reading the forums. Things like herbal treatments and chiropractic are quite common.
What has undeniably helped me during this ordeal? The two things that I can honestly point to are regular exercise, and talking / typing with others, both the afflicted and the non-afflicted, in an atmosphere that feels sympathetic.
What's this? Stress-reduction. What else can I say about this? If I don't get my bike rides in, my MD symptoms are worse. If I'm stressed about something (I have two toddlers and have recently been laid off, so that should give you some example), my tinnitus is worse. If I don't get enough sleep (which is usually), I'm dizzier. I could keep going forever here, and I'm sure I'm preaching to the choir.
So all of this has gotten me to another path. I don't intend to scrap everything else. At my next ENT appointment, for example, I intend to discuss how I have discontinued the drugs and also talk about my jaw pain, etc. But aside from this, I am planning to attack this disease in a new way, from the standpoint of reducing stress and being happier and healthier. I have a feeling that if I can get control of stress, my MD, and any other (related?) problems, such as anxiety, migraines, insomnia (all of which I have), will be... ??? Not sure how to finish that sentence. Maybe "much more tolerable"? "In context"?
I've recently read (and am now re-reading) a book called "The Relaxation Response". It was written by a cardiologist a couple of decades ago and has recently been revised. It is, essentially, meditation and its benefits from a medical perspective. I will not summarize it here, but highly recommend that you read it if you are interested. I got a new copy in paperback for about $5. I will just say that this book has gotten me very excited about helping myself. It hasn't fixed my MD or anything else yet, but it sure has suggested a promising route that I should take to help fix this myself.
I'm not going to start pontificating about something that I have only begun to study. But I will end by saying that I am sure that getting control of stress and anxiety in a "natural" way will probably be the best thing I will have done for my Meniere's. I hope that this is true, and I will keep you posted on the progress.
Thursday, April 2, 2009
Remission? Cured?
I haven't posted in quite a while because, well, nothing has changed with my Meniere's in quite a while. At my last ENT appointment, the doctor did, well, nothing. Aside from looking in my ear and asking me 3 minutes' worth of questions that I've answered a hundred times before. Nothing has changed, and I'm now doing nothing. Seriously, nothing. I stopped taking Acetazolamide (Diamox), the one thing the doctor says to always continue doing. I have long suspected that it is doing nothing for me, and the doctor uses it as a panacea because he (the medical industry) knows nothing else to do for Meniere's. Well, I stopped taking it several weeks ago, and nothing has changed. I still drink alcohol and caffeine.
I also stopped taking anti-depressants. The process of discontinuing anti-depressants is a very awful one, and that's a discussion for another forum. But as with Diamox, I suspected that, in the long run, these anti-depressants are not helping me. Or maybe more correclty, I am at a point where I do not need them as I did before. As a security blanket. Furthermore, they are masking feelings and sensations, both good and bad, and I'm tired of operating in a haze, where I'd much rather take a nap than do anything else.
Ok, so the point is, I have stopped all conventional Meniere's treatment, and my Meniere's has not changed. It is still there, always, the ringing, the occasional dizziness, fullness, pain, hearing problems. Vassilates during the day and follows no discernable pattern.
So what's up? The medicine didn't work and I finally figured it out? Is Meniere's in remission? I suspect some combination of both. Please understand that I ABSOLUTELY DO NOT ADVOCATE THAT EVERYONE STOP TAKING THEIR MEDICINE! Again, this forum is about my experiences and what I've done and what effects have resulted, if any.
My doctor says that the Meniere's may come back in its initial form. I pray that this does not occur, but I am now convinced that there is little I can do, pharmacologically, to prevent this.
However, I have some new ideas. Well, they're not new. But they represent what I believe to be a new approach to this "disease", and much more. I'm still studying and learning, but I have high hopes. This is something non-medical, something I can control, and something that, if done properly, can also help a lot of other things that I think accompany Meniere's.
More about this in another post.
I also stopped taking anti-depressants. The process of discontinuing anti-depressants is a very awful one, and that's a discussion for another forum. But as with Diamox, I suspected that, in the long run, these anti-depressants are not helping me. Or maybe more correclty, I am at a point where I do not need them as I did before. As a security blanket. Furthermore, they are masking feelings and sensations, both good and bad, and I'm tired of operating in a haze, where I'd much rather take a nap than do anything else.
Ok, so the point is, I have stopped all conventional Meniere's treatment, and my Meniere's has not changed. It is still there, always, the ringing, the occasional dizziness, fullness, pain, hearing problems. Vassilates during the day and follows no discernable pattern.
So what's up? The medicine didn't work and I finally figured it out? Is Meniere's in remission? I suspect some combination of both. Please understand that I ABSOLUTELY DO NOT ADVOCATE THAT EVERYONE STOP TAKING THEIR MEDICINE! Again, this forum is about my experiences and what I've done and what effects have resulted, if any.
My doctor says that the Meniere's may come back in its initial form. I pray that this does not occur, but I am now convinced that there is little I can do, pharmacologically, to prevent this.
However, I have some new ideas. Well, they're not new. But they represent what I believe to be a new approach to this "disease", and much more. I'm still studying and learning, but I have high hopes. This is something non-medical, something I can control, and something that, if done properly, can also help a lot of other things that I think accompany Meniere's.
More about this in another post.
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.
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.
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.)
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.)
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