Blepharospasm Bulletin Board

For me, this is the most interesting topic Blepharospasm has to offer, and I don't really understand why Neurologists are not more interested in learning more about this phenomenon. The first thing I did when I learned the fluorescent light over my kitchen sink seemed to shut my eyes down was to experiment to verify whether or not it was the visible light that was causing the problem, and we quickly determined that it wasn't. Regardless of whether I could see the light or not, it affected me. There is always an assumption that it is the "brightness" or the "flicker rate" that causes the problems, and for me, we know that is not the case. So if it isn't the visible light, what is it?

It is well known in industry that non-visible frequencies generated by fluorescent lighting systems can interfere with other electronic equipment. Here's one article below you might want to reference - It's from EC&M magazine, the technical authority for 140,000+ electrical professionals. Some excerpts from the article:

electric fields develop around fluorescent lighting fixtures, and today's electronic ballasts create high-frequency fields. The impact of these fields depends upon the sensitivity of equipment within those fields and the distance from the fixtures to the equipment…. these fields can adversely affect very sensitive electronic equipment… But it's not just super-sensitive scientific devices that are affected. Hearing aids, for instance, may interact with the electric field signals and then generate an unwanted hum, hiss, or whine. For some individuals, simply walking into certain buildings can become a problem.

So if these systems can impact electronic systems, why is it so hard to believe they couldn't impact neurological systems, particularly those with "bad wiring" as Gloria was talking about. The wiring of my 7th cranial nerve changed after an attack of the herpes virus, wires were crossed, and there are probably now some loose wires as well. So I have become susceptible to interference from the outside. The same concept would apply with any wiring deficiencies in other cranial nerves as well.

Anyone who worked in an office setting was exposed to fluorescent lighting. One explanation of why that exposure could affect some people and not others is that sometimes fluorescent lights aren't wired properly, causing them to throw off even bigger fields than they should. In my case, my right eye would be shut constantly in my office, but I could walk across the hall into my employees offices and it would open. The reason turned out to be that the lights in my office were cross-wired into the circuits for the outlets in my office, creating what my electrician called a "harmonic distortion" and what I called an electromagnetic field since I could measure it with a gaussmeter. At head level sitting at my desk, the readings were a consistent 8-10mg, or about 50 times higher than what you might expect in such a setting. An inspection of the building in each location where I had significant problems revealed a wiring error in each case. I feel certain that if I had never moved into that office and spent 60 hours a week in it that I would never have developed BEB and the rest of the Dystonias that have followed.

In that same 6 story office building, where my office was on the 3rd floor, we identified fluorescent lights on the first floor that when turned on, would shut my eyes down. Obviously, I couldn't see them.

What is interesting with me now that I have developed other problems than just my eyes is how different environments cause different reactions. Last fall in San Diego, where I was having virtually no problems wherever I went, I went into a grocery store with my friend and 3 steps into the store, my eyes started spasming non-stop. When we got back to the deli counter, standing there my eyes were open but my mouth was making all kinds of erratic movements. As we walked back thru the store my mouth stopped and my eyes started again, then when we got to the checkout counters, which are notoriously bad places for me, both my eyes and mouth were fine but my right shoulder raised up and my head bent over to the right. So different frequencies, different reactions.

I would really like to see the BEBRF fund some research into understanding exactly what it is about fluorescent lights that causes us to react. Does it really have something to do with the brightness (easy to measure). Does it really have to do with the flicker rate (not sure how easy that would be to measure)? Or does it have to do with other frequencies (possible to measure)?

Theoretically, newer lighting systems should create less problems. Electrical wiring codes have changed over the years to reduce these problems, and the lights themselves are designed better these days. That still assumes everything is wired properly.

Now my question for everyone is - the typical reaction seems to be putting on a hat or visor or sunglasses or both - does that really stop the spasms and return your eyes to their more normal state????? If it does, that would be evidence that it is the visible light creating the problem. From my own experience, I am skeptical of that, but I have no problems with photosensitivity, which many of you do.

At any rate, this is another aspect of fluorescent lighting that needs to be taken into account, and should be researched in an effort to find ways to lessen the impact on us.