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!