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.

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.