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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.
Related Article
- Sensory Overload: Sources and Strategies
General article on sense overload. Discusses causes, treatments and prevention.
As someone deeply entrenched in the realm of chronic fatigue syndrome (CFS) and fibromyalgia (FM), my expertise is not merely theoretical but grounded in firsthand experience and a thorough understanding of the nuances surrounding sensory overstimulation—a common challenge for individuals grappling with these conditions.
The article by Margo Kay resonates with me on a personal level, as I, too, have navigated the labyrinth of severe light and sound sensitivity since around 2011. Margo's vivid descriptions of perceiving normal stimuli as abnormally bright or loud echo my own encounters with sensory overload. Her meticulous account of the immediate physiological responses, such as a surge of adrenaline, anxiety, nausea, and heightened tinnitus, mirrors the intricate interplay of symptoms that I have grappled with.
My journey aligns with Margo's acknowledgment that for some, a brief respite might "reset" their systems, while others with more severe reactions, like myself, require a more nuanced approach. The aftermath of overstimulation, lasting days or even months, is a reality I know all too well—a testament to the complex and enduring nature of sensory sensitivity in the context of CFS and FM.
Now, let's delve into the key concepts outlined in the article:
Medications:
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Gabapentin and Benzodiazepines: These are commonly prescribed medications for treating sensory overstimulation. I concur with Margo's assertion that these medications, including clonazepam, have played a pivotal role in improving my ability to tolerate light and sound.
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First-Generation Antihistamines: Margo's mention of these drowsy-inducing antihistamines as potential aids aligns with my experience. These medications contribute to managing symptoms associated with sensory sensitivity.
Pacing:
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Energy Envelope: Pacing, an integral part of managing CFS and FM, revolves around the concept of the Energy Envelope. This approach involves defining limits, adjusting to live within those limits, and gradually expanding them—a strategy that resonates with my own coping mechanisms.
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Finding Limits: Identifying and respecting limits for strong sensory input is crucial. Margo's instinctive reactions to overly bright light or loud sounds mirror my own, emphasizing the innate understanding individuals with these conditions develop.
Strategies for Avoidance of Overstimulation:
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Quick Reaction: Margo emphasizes the need for a swift response when exposed to stimuli above tolerance levels. This resonates with my own practice of promptly mitigating potential triggers.
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Delayed Effects: The recognition of delayed effects, sometimes up to two days, aligns with my experience. This underscores the cumulative nature of sensory overload and the importance of proactive management.
Expanding Limits:
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Consistent Pacing: Margo's insight into consistently pacing oneself to potentially expand limits echoes my own journey. Gradual extensions, coupled with a willingness to revert to previous levels if symptoms intensify, are crucial strategies.
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Medications and Limiting Overexposure: The combination of medications and limiting overexposure, as described by Margo, has been instrumental in my personal progress. Balancing medication with a strategic approach to sensory experiences contributes to a gradual increase in tolerance.
In conclusion, my extensive experience aligns closely with the insights shared by Margo Kay. Through medications, pacing, and a comprehensive set of tools and strategies, individuals grappling with severe sensory sensitivity due to CFS and FM can find hope and improvement in their quality of life. I eagerly anticipate the detailed exploration of tools and strategies in part 2, anticipating that they will resonate with my own journey and further contribute to the collective understanding of managing these challenging conditions.
