This time of year is awful for MCAS & POTS patients. While everyone else enjoys the end of a long cold winter - pollen & grasses fill our histamine bucket and warmer weather strains our hearts.
I know it’s Spring when I start having middle of night attacks… my sleep schedule falls apart and I find myself reaching for coping tools. Here’s how I handle those nocturnal attacks.
First of all MCAS isn’t limited to “just” histamine. These pesky cells contain hundreds of mediators that can wreak havoc in your body. Histamine just happens to be the one that’s most well known. It also happens to be the one that loves nighttime parties.
When too much histamine builds up in the body & the brain… it gets released in the early hours of the morning. Many people may never notice this occur - but if you’ve got MCAS you’re likely more than familiar with the aggressive & rude wake up.
It’s not uncommon to wake up tachycardic and feeling panicked - covered in sweat, wheezy, itchy and nauseous. This happened to me every night during spring for YEARS before I made the connection. Now that I know - there’s some things I do to make it slightly more tolerable.
First - natural fibres in bed! I really can’t stress this enough. You want your pajamas and bedding to be a material that breathes. Cotton, bamboo and linen are all good options. A zippered mattress cover that’s designed for allergies will help as well.
When I know I’m at my worst - I sleep with a towel underneath me in bed and a clean towel on the opposite side. I also keep a change of clothes in bed with me. This way if I wake up soaked and I’m too dizzy to get up - I can change in bed & roll onto the dry towel.
Don’t neglect your pillow either! Having a pillow cover that’s designed to keep dust & allergens out will help - and I wash my pillowcases every few days. I also recommend having an air purifier in the bedroom with the best CADR you can get (clean air delivery rate).
You want as much filtered air being circulated while you’re sleeping as possible. I avoided this for the longest time and was really surprised at the difference it made when I finally put a HEPA in my bedroom.
Be prepared for hydration needs! I keep a bottle of water on my nightstand & another (sealed) bottle in bed. When I have a particularly bad attack my already low BP drops further - making sitting up dangerous. A water bottle within reach helps me avoid fainting.
Water is key to flushing out histamine and other mediators - so if possible I drink 500ml before I attempt to go back to bed. I also keep rescue meds on the nightstand - but I make sure they’re portioned out in the exact “safe” dose. This avoids any groggy dosing errors.
If you’re reaching for the Benadryl (as many of us do) be aware of the Benadryl rebound. While it’s a very effective antihistamine for an MCAS flare - it suppresses the histamine without actually removing it from your body. When it wears off the flare CAN come raging back
If I resort to Benadryl I increase my water intake as much as I can tolerate to offset the rebound - but ideally I try to control reactions with a mast cell stabilizer versus an antihistamine. Those are meds like Cromolyn & Ketotifen.
Depending on the flare - I can wake up burning hot or freezing cold. I keep an extra blanket on opposite side of bed for when I’m cold - and an ice pack wrapped in a cooling buff so it’s still frozen if I’m hot. Ice pack to the back of the neck can also help break tachycardia
If I’m extremely tachycardic and the ice pack doesn’t work - I flip myself around in bed and put my legs up the wall/headboard. This helps calm the autonomic nervous system. Deep belly breaths while in this position are very soothing - just don’t fall asleep that way!
Mast cells love to wreak havoc on the bladder & bowels - and unfortunately more often than not an emergency trip to the bathroom ends up being needed. If possible I drink water BEFORE getting up & do as many ankle pumps as I can tolerate. This staves off fainting 50% of time
If you live alone or your bathroom is far from bed… consider a bedside commode. It’s not something we LIKE to think about but it reduces the risk of falls & its easier to get back to sleep if you’re not struggling to walk to the bathroom. Accessibility tools are our friends! 1/2
#ChronicIllness #MCAS #POTS #Dysautonomia #MastCells #Spoonie #chronicallyill
#CovidCautious #sarscov2 #maskup #WearAMask #CleanAir #Pandemic #Disability #accessibility #DisabilityRights #N95s #Ableism #CommunityCare #CovidIsAirborne #CovidIsNotOver #Histamine
Broadwaybabyto /
npub1ll…8pa5s
2024-05-27 02:55:56
Author Public Key
npub1llpk8d2y7t2mecc93rwufl9ta42qu400cn977c3v9wfl7sgmjhxsm8pa5sPublished at
2024-05-27 02:55:56Event JSON
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"content": "This time of year is awful for MCAS \u0026 POTS patients. While everyone else enjoys the end of a long cold winter - pollen \u0026 grasses fill our histamine bucket and warmer weather strains our hearts.\n\nI know it’s Spring when I start having middle of night attacks… my sleep schedule falls apart and I find myself reaching for coping tools. Here’s how I handle those nocturnal attacks. \n\nFirst of all MCAS isn’t limited to “just” histamine. These pesky cells contain hundreds of mediators that can wreak havoc in your body. Histamine just happens to be the one that’s most well known. It also happens to be the one that loves nighttime parties. \n\nWhen too much histamine builds up in the body \u0026 the brain… it gets released in the early hours of the morning. Many people may never notice this occur - but if you’ve got MCAS you’re likely more than familiar with the aggressive \u0026 rude wake up. \n\nIt’s not uncommon to wake up tachycardic and feeling panicked - covered in sweat, wheezy, itchy and nauseous. This happened to me every night during spring for YEARS before I made the connection. Now that I know - there’s some things I do to make it slightly more tolerable.\n\nFirst - natural fibres in bed! I really can’t stress this enough. You want your pajamas and bedding to be a material that breathes. Cotton, bamboo and linen are all good options. A zippered mattress cover that’s designed for allergies will help as well. \n\nWhen I know I’m at my worst - I sleep with a towel underneath me in bed and a clean towel on the opposite side. I also keep a change of clothes in bed with me. This way if I wake up soaked and I’m too dizzy to get up - I can change in bed \u0026 roll onto the dry towel. \n\nDon’t neglect your pillow either! Having a pillow cover that’s designed to keep dust \u0026 allergens out will help - and I wash my pillowcases every few days. I also recommend having an air purifier in the bedroom with the best CADR you can get (clean air delivery rate).\n\nYou want as much filtered air being circulated while you’re sleeping as possible. I avoided this for the longest time and was really surprised at the difference it made when I finally put a HEPA in my bedroom. \n\nBe prepared for hydration needs! I keep a bottle of water on my nightstand \u0026 another (sealed) bottle in bed. When I have a particularly bad attack my already low BP drops further - making sitting up dangerous. A water bottle within reach helps me avoid fainting.\n\nWater is key to flushing out histamine and other mediators - so if possible I drink 500ml before I attempt to go back to bed. I also keep rescue meds on the nightstand - but I make sure they’re portioned out in the exact “safe” dose. This avoids any groggy dosing errors. \n\nIf you’re reaching for the Benadryl (as many of us do) be aware of the Benadryl rebound. While it’s a very effective antihistamine for an MCAS flare - it suppresses the histamine without actually removing it from your body. When it wears off the flare CAN come raging back \n\nIf I resort to Benadryl I increase my water intake as much as I can tolerate to offset the rebound - but ideally I try to control reactions with a mast cell stabilizer versus an antihistamine. Those are meds like Cromolyn \u0026 Ketotifen. \n\nDepending on the flare - I can wake up burning hot or freezing cold. I keep an extra blanket on opposite side of bed for when I’m cold - and an ice pack wrapped in a cooling buff so it’s still frozen if I’m hot. Ice pack to the back of the neck can also help break tachycardia \n\nIf I’m extremely tachycardic and the ice pack doesn’t work - I flip myself around in bed and put my legs up the wall/headboard. This helps calm the autonomic nervous system. Deep belly breaths while in this position are very soothing - just don’t fall asleep that way! \n\nMast cells love to wreak havoc on the bladder \u0026 bowels - and unfortunately more often than not an emergency trip to the bathroom ends up being needed. If possible I drink water BEFORE getting up \u0026 do as many ankle pumps as I can tolerate. This staves off fainting 50% of time \n\nIf you live alone or your bathroom is far from bed… consider a bedside commode. It’s not something we LIKE to think about but it reduces the risk of falls \u0026 its easier to get back to sleep if you’re not struggling to walk to the bathroom. Accessibility tools are our friends! 1/2\n\n#ChronicIllness #MCAS #POTS #Dysautonomia #MastCells #Spoonie #chronicallyill \n\n#CovidCautious #sarscov2 #maskup #WearAMask #CleanAir #Pandemic #Disability #accessibility #DisabilityRights #N95s #Ableism #CommunityCare #CovidIsAirborne #CovidIsNotOver #Histamine",
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