What SMA Symptoms Keep You Up At Night? | mySMAteam

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What SMA Symptoms Keep You Up At Night?
A mySMAteam Member asked a question 💭
posted December 19, 2023
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A mySMAteam Member

After years of having no problems sleeping or falling asleep ...i have now found sleeping just about impossible. It started maybe around 2012...i would hear my grandmother who had dementia wandering in the middle of the night. Then my mother had a stroke, and i would listen for her to call for my dad who was a deep sleeper. Now that both are gone, i am constantly listening for my dad who has balance issues in case he falls in the middle of the night. Now i play a white noise machine just so i don't wake up with every thud. My legs with bad circulation freeze while i struggle to move under roasting hot covers. Since starting Evrysdi, been gassy and bloated all night. No one to call to reposition me in middle of night, so my ear has a tiny sore that never ever goes away and starts hurting just as soon as start to drift off. Dad rolls me once when he gets up, and i might get in an hour of sleep before attendant who is a morning person shows up to toss me out of bed. When i do sleep ...often have vivid nightmarish dreams which i suppose should be more frightening then they are...but don't compare to my daily ordeals.

posted December 23, 2023
A mySMAteam Member

Twitching, breathing change, extreme fatigue not just physical, but generally I eventually sleep just like climbing a mountain each day with a back pack whose weight is getting heavier

posted December 19, 2023
A mySMAteam Member

Thanks for making note of the Evrysdi, causing the gassiness. I spoke with my neurologist about it, and he said it was more likely the Ozempic then it was the ever see but I’ve been on the Ozempic much longer and didn’t have these problems. The bloating is very hard to deal with.

posted January 18

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