Sensory Control For Severe ME : How To Turn Off The World
What Is Sensory Hypersensitivity?
Sensory hypersensitivity aka sensory sensitivity is when normal stimuli become extremely amplified or even physically painful.
Sensory sensitivity is a symptom of multiple neurological conditions the most commonly known examples being migraine and autism. Extreme sensitivity to touch can be diagnosed as allydonia which is when non-painful tactile stimuli cause severe pain and is a feature of CRPS.
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Severe ME & Sensory Sensitivity
Sensory sensitivity is a common feature of all levels of ME. However, while less severe patients may experience periods of sensory sensitivity brought on by post-exertional neuroimmune exhaustion (aka "crashing"), the most severe patients experience severe sensory issues constantly.
Patients who are very severe or recovering from a crash require a low sensory environment because the stimulation caused by sensory input is both physically painful and drains energy both of which can prolong the severe state or lead to deterioration.
Patients should aim to control: light, noise, touch, and smell. Depending on the person different senses might be more important to dampen.
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Light Control
The manta sleep masks are well regarded within the ME community as being most effective for complete blackout. However, it is expensive and any sleep mask is an essential tool.
Blackout blinds or curtains are ideal for covering windows. Care should be taken to avoid light leakage from between the curtain rod and the ceiling.
Door sealing tapes and strips are available online to provide a light-proof seal.
Blackout stickers for LED lights are available on Amazon and can be used to cover charging and indicator lights that cannot be switched off.
In addition to controlling light generally, some patients find that like migraine sufferers blue light is particularly painful. The use of blue light filters on devices, migraine sunglasses that filter blue light, and blue light-free lightbulbs or reading lights can assist.
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Noise Control
Noise-canceling headphones are an essential tool for unavoidable loud noises. Industrial ear protectors can be preferable though due to affordability, higher decibel rating, and no need for power supply.
Foam or silicon earplugs can be used in addition to or in place of over-ear noise cancelation. This is especially useful for side sleepers.
Soundproofing a room can be done professionally by construction firms that specialize in music studios and similar. Replacing less dense doors with hardwood ones can also assist greatly with noise reduction.
Using noise-canceling curtains both over windows and large walls can help absorb sound within the room and prevent echoing. But to truly block noise from a window it is best to cover it with a panel of wood on either the inside or outside of the house.
Care should be taken when choosing appliances to choose quiet models, especially for air purifiers and air conditioners.
Your behavior should be modified to avoid loud noises and talking. Clanging noises like silverware on plates can be especially triggering.
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Medication
While sensory sensitivity in ME does not fully overlap with migraine, migraine treatments can assist some patients with light and noise sensitivity. Additionally, a migraine specialty neurologist may be better equipped to deal with severe ME patient's limitations when providing neurological consults.
In addition to long-term migraine treatment and migraine abortatives, many very severe ME patients report that lorazepam or other benzodiazepines can strongly dampen sensory sensitivities. However, as tolerance to the medication increases, this effect wears off. Therefore, most very severe patients only use benzos as a tool when sensory stimulation can not be avoided such as during transport to hospital.
Finally, in the case of severe allydonia (touch sensitivity) some patients may benefit from the use of gabapentin or other nerve pain medications.
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Scent Control
Fragrance-free products should be used whenever possible. However, it may not always be possible to control scents entering the room, especially with hired caregivers.
An air purifier can remove scents from your room faster. I use the Blueair 3410 which is very small and quiet. It can be significantly less noisy to run two small air purifiers over 1 larger one, although this is generally more expensive.
A high-quality face mask (n95+) will also dampen smells. Options with activated charcoal will block scents better but can be hard to find at n95 ratings. Sillicon-sealed respirators offer cartridges for chemical fumes but may less comfortable.
While corsi-resenthal boxes will filter mold spores, pollen, smoke, and pathogens they will not filter fragrance like a commercial air purifier and can be loud unless made with computer fans.
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Tactile Control
Cotton or bamboo knit fabrics are often preferred.
No clothing may be preferred to avoid triggering pain.
Bamboo sheets or very high thread counts are ideal.
Temperature can influence tactile sensitivity. Climate control can help.
Simply having another person present in the room can be painful in extreme circumstances. If someone with ME cannot communicate assume your touch and presence may be harmful unless they have told you otherwise.
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Tools For Sensory Control Summarized
Personal
-Manta sleep mask
-Noise-canceling headphones
-Industrial ear protectors
-Sillicon or foam earplugs
-N95 face mask
-Respirator with fragrance blocking cartridges
Room
-Professional soundproofing
-Noise-canceling blackout curtains or blinds
-Door sealing strips
-Replace doors with hardwood options
-Block windows with wooden panels
-Blackout stickers for LED indicators
-Low-noise appliances
-Air purifier
-Climate control
Behavior
-Quiet speech and careful walking
-Careful of clanging especially when placing objects and carrying plates and silverware
-Warning when turning on lights or before doing noisy activities
-Wear low-fragrance products
-Avoid unnecessary touch and presence
-Warn new people about how to interact with sensory sensitivities
Medication
-Migraine medication
-Benzodiazepines
-Nerve pain medication
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Sensory Sensitivities can be one of the most debilitating parts of Severe ME and very Severe ME as well as affecting anyone with Myalgic Encephalomyelitis during crashes.
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So when Post Exertional Neuroimmune Exhaustion or PENE aka Post Exertional Malaise or PEM or Crashing occurs and you have to blackout the world, what do you do?
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What do you do when light, noise, scents, movement, and even touch become poisonous? When sunlight burns your mind and the clink of a fork on plate drills through your head?
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While nothing can completely end the torment of severe sensory sensitivity there are many ways we can modify our behavior, garments, environment and homes to better deal with #overstimulation. This guide aims to give you the tools you need to block out the world.
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Tldr:
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Vision: eyemasks, blackout curtains, migraine sunglasses, phone filters, blue light-free lighting
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Hearing: industrial ear protection, noise-canceling headphones, ear plugs, boarding windows, quiet appliances, professional soundproofing
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Scents: N95 masks, air purifiers, activated charcoal masks, respirator masks
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Touch: Bamboo or cotton materials as high thread count as possible, climate control
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These are just the ideas and strategies I have collected thus far. Please share your own favorite tips for dealing with sensory sensitivity below!
