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.
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