Look after the senses and the sounds will look after themselves. ― Alice in Wonderland by Lewis Carroll
I have been thinking of writing this post for a while, but each time I end up frustrated when I try to find the science to match my experience. Apparently, the effect I am reaching for is not well documented. It has to do with noise, sound, seizures, and pain. It wasn’t until I read a rather good article from the American Kennel Club on undiagnosed pain in dogs that I decided to just throw my experience out there.
The study looks at how dogs with musculoskeletal pain are more broadly sensitive to noise than those in the control group without pain.
The paragraph that got my attention was this:
“The researchers hypothesize that when a dog suffering from pain gets startled or tenses up from a loud or sudden noise, it aggravates their pain. This causes a learned association between loud sounds and pain to develop, which can easily generalize to all kinds of situations where the dog has experienced noise.”
I started thinking about the problems that I encounter with sound. I truly believe TLE often affects all senses. Some of my triggers include light issues involving strobing, computer generated effects on television and movies, strong light and dark contrasts, you name it. The exposure to strong sensory experiences almost always causes a seizure or trigger a cycle in me that requires rest and separation.
Sound is particularly troublesome. My sensitivity has taken away my ability to hear live music in a crowd, attend a high school musical, or enjoy a large family gathering without risk. This sound problem is constant and it is painful. It is not dependent on my mood or any other surrounding factors.
At this point, I suggest you stop all conversation with neurologists when they dismiss your reactions as being “in your head”. Actually, it is in your head, but not in the way they mean. It does not have to result from emotional illness, hysteria, or weakness. It’s part of the neurological picture of some individuals. And somehow for me, pain, sensory overload, and seizures are braided together so that when I experience one, I experience the others.
I recently turned up a federally funded study on autosomal dominant partial epilepsy with auditory features, or ADPEAF. It is an uncontrollable epilepsy that runs in families, set off by specific voices, music, and other sounds of various volume. It can cause loss of consciousness, stiffening, rhythmic jerking, or, as in my case, pain. I believe my late father had the same condition, which resulted in his desire for social separation, or, as some people would say, being a recluse.
I was told by a neurologist some time ago that there is no pain with seizures. Needless to say, I did not stay with him long. If I experience pain, then that is my experience. It’s in my brain and possibly linked to the migraine response. And sadly, it often comes at a time when I am happy and enjoying what is going on around me.
As I mentioned before, it is hard to find information on the things I experience with sound, pain, and seizures, but I did run across another interesting article, this one by Sara Adaes, PhD, on music and its ability to trigger seizures in those who are resistant to anticonvulsants.
Adaes mentions the focal seizures of TLE and music can be a trigger. She mentions that there is a complex relationship between epilepsy and music. These seizures are called musicogenic and are considered weird by the experts, according to Adaes. Again, for the maybe five thousandth time, I am not a neurologist, but there are a few logical things here that jump out at me.
Just for the sake of argument, if focal seizures occur in the temporal lobe that houses your memory, auditory, sensory processing, why wouldn’t a particular sound or piece of music or style of music cause a seizure every time. Maybe that is where the damage exists. Who know? It’s the brain and trust me, they don’t know everything about it. They are not really even close.
So, OK, we have researchers admitting that sound can cause seizures, that music can cause seizures, even though they find it weird. What about the pain? I believe pain accompanies seizures for more of us that doctors know or will admit. It is a hard thing to measure, this pain. And if you tell a doctor that music causes pain as well as seizures, that a door slamming can be a painful trigger, that the electricity in your body turns into a Taser during a television laugh track, you might be disappointed with the response. But don’t give up, each day more and more information is coming to the surface and at some point, all this won’t be weird, it will be an accepted symptom.
Finally, in the article about the dogs, I thought this sentence was interesting, “It should be noted that dogs don’t understand pain. They do not comprehend why their life is different than it was before, hence the anxiety and shivering associated with pain.” Well . . .dogs are not the only ones.