Coping Strategies for Severe Sensory Overload, Part 1
By Margo Kay
Note: Margo, who lives in Missouri, has been a member of our community since 2011.
Sensory overstimulation is quite common among people with CFS and FM. Light and sound are probably the most common triggers. People also report being overstimulated by movement, scents, touch, taste, smell, electromagnetic fields, and vibration.
For some people, just taking a time out for a few minutes or an hour or two will "reset" their systems and they can be about their business. For those of us who have more severe reactions, it doesn't work that way.
Since about 2011, I have suffered from severe light and sound sensitivity. I experience many normal exposures to light and sound as abnormally bright or loud, but, as I describe below, I have found many strategies that have helped me regain some control.
My Experience of Overstimulation
At my worst, I experience any normal exposure to light and sound as excruciatingly uncomfortable. Sunlight on a white wall can be like looking into the face of the sun. Sometimes even the noise of the central air conditioner is intolerable.
Sudden strong overstimulation triggers an immediate surge of adrenaline, anxiety, sometimes nausea, and makes me very jittery and restless. My tinnitus increases proportionally with the level of overstimulation.
Lower levels of overload creep up on me until I realize I am quite uncomfortable. In either case I am even more sensitive afterwards and can experience a crash, usually a couple of days later.
Once I am overstimulated, the consequences last at least a couple of days, sometimes months, and sometimes indefinitely, if the transgression was large enough. The bottom line: I have learned that I need to be extraordinarily careful.
And I’ve also learned that medications and pacing can help, both to control symptoms and to expand my tolerance for light and sound. This article gives an overview of the approach I learned and part 2 describes my tools and strategies in detail.
Medications
Two types of medications are typically used to treat sensory overstimulation: gabapentin and/or benzodiazepines, particularly clonazepam. My doctor says that first generation antihistamines (the ones that make you drowsy) can also be helpful.
I take gabapentin and medications from the other two groups. Although I am still quite limited, the meds make me more able to tolerate light and sound. As my tolerance improves, the lighting begins to seem annoying dim and I can increase it. Noises like water from running from the kitchen faucet or a flushing toilet don't send me scurrying for my headphones.
Pacing
As in so many aspects of living with CFS and Fibro, pacing is important for sensory overload. Pacing is built on the idea of limits, often called the Energy Envelope. Illness imposes limits; if one is outside her limits, symptoms are intensified. Pacing has three parts:
- Defining limits
- Adjusting to live within limits
- Expanding limits.
1) Finding Limits
Finding limits for strong sensory input is pretty easy. It's instinctive. If the light is too bright, my instinct is to cover my eyes or flee. Same thing with sound that's much too loud. I feel panicky and "make it stop!!!!!!!!!!" is all I can think in both situations.
However, as with many limits, the effects of lesser sensory experience can be cumulative, with the effects delayed. I have found a good rule of thumb is “If it's even a little uncomfortable, it's too much."
2) Adapting to Limits: Tools for Avoiding Overstimulation
Given my level of sensitivity, my major challenge is to severely limit my exposure to light and sound. Most of what I do to protect myself can be considered as strategies for avoidance of overstimulation; I’ll describe them in detail in part 2.
I’ve learned that I need to react quickly when I hear or see something which feels like it's above my tolerance level. Also, I’ve learned that the effects of overstimulation can sometimes be delayed up to two days. When that happens, it's usually because the effects of overstimulation are cumulative.
What's difficult to avoid is unexpected overexposure. One time, a home health aide walked in the door in the middle of a loud conversation on her cell phone in speaker mode, with the screen brightness turned up very high and pointed toward me. I was in tears within seconds.
Maybe I could avoid this kind of reaction if I overprotected myself at all times, but that would likely lead to increased sensitivity over time, so I’ve accepted that I’m not in control of all situations.
3) Expanding Limits
The self-help program teaches that if you pace consistently, you may be able to expand your limits, doing more without intensifying your symptoms. The keys are to extend limits a little bit at a time and to return to your previous level if the extension increases your symptoms.
This applies to expanding the envelope for tolerance of sensory data. I’ve found that medications help, as well as limiting overexposure. Thanks to careful pacing, I no longer wear earplugs all day and on cloudy days am able to open my curtains a bit. I’ve recently replaced some 25w bulbs with 60w.
Another person in our self-help program reported a similar gradual increase in her tolerance for sound. Knowing that she was sensitive to sound, she decided to listen to five minutes of music a day. Over time, she was able to lengthen her listening time and now she is able to attend concerts.
Some other people have experienced spontaneous improvement in their sensory tolerance as their CFS became less severe.
Conclusion
I’ve learned over the last six years that even with serious sensory sensitivity, there is hope. I’ve found a combination of medications that help. The meds, along with pacing and the strategies and tools I’ll describe in part 2 have enabled me to improve my tolerance and to prevent many overload situations.
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