I had many years of terrible sleep. I eventually tried only allowing myself the amount of sleep that i used to have before MS. In my case 6/7 hours per night. i use an alarm in the morning, without i will sleep far too long and feel awful all day. I stopped napping in the day, I found that the chronic fatigue that was dragging me down was only made worse by napping. If I feel totally unable to avoid a nap these days I set my phone arm for 15 mins. Ive found not watching too much TV, and finding some kind of activity in the evening that's vaguely constructive and purposeful helps to get me tired in a better way. The sleep rationing and cutting out most naps is hard work, but for me it lifts me out of the lethargy that i used to feel. Its almost as if the chronic fatigue is something that can't be cured with more sleep, I found it only made things worse.
I try and go to sleep at the same time every night and wake up at the same every morning regardless of weekdays or weekends. This made a massive difference for me. It can be difficult socially when everyone else stays up late on a Saturday night but it works.
I'm a light sleeper and with MS fatigue have rarely woken "refreshed" after a night's sleep. However I have found listening to audio books really helpful in going to sleep. Once you find the right "voice" and type of book (for me it's a low male steady voice like David Suchet) it only takes minutes sometimes and I'm asleep. And the app has settings so it will stop playing automatically after X time.
I also drink a few sips of camomile tea but try to avoid drinking much in the hours before bed to avoid too many loo trips..
Untreated thyroid (low free T3) drove part of my serious sleep disorder. Taking first dose of TH at 3:00 wake allowed me to slowly reinvent a whole nights sleep. I responded negatively to all normal sleep hygiene tactics and sleep meds. In fact blue light actually helped me sleep prior to discovering thyroid issues. I work with a sleep neurologist.
I also have MS Related apnea from a right side face/palate relapse. Unlike the average bear my sleep apnea is worse on left side, rather than back. Still residual swallowing and tongue issues as well.
Last, severe REM apnea (compared to regular apnea levels) can’t be treated by CPAP - requires a BiPAP to increase pressures quickly enough. Without, I wake up heart racing (trying to get oxygen) every time my body tries to hit REM. Before this was figured out, I was hitting serious dementia. Theoretically MS. And perhaps that’s what drives it! No clue.
I may add that you can download an insomnia CBT app for free if you happen to be registered with NHS England. Otherwise [andoid/CBT-i Coach] is less polished but does the same thing for free. Tony Fonda
Great article. My worst MS symptom is severe RLS. I'm trying to raise awareness amongst the medical profession as far too many have zero knowledge. It's a shame that RLS patients have to educate themselves and their GPs and neurologists. Too many doctors are over prescribing Dopamine agonists and increasing the dose when augmentation hits. RLS UK is running a campaign to address this but it'll take ages for any change to happen.
I started using a colouring app called Loóna at bedtime that claimed it could help you sleep better. I was pretty dubious at first, but its made a massive difference - easier to get to sleep and I tend to stay asleep too! I could always do with more, but with a toddler it's not going to happen!
I've been taking Laroxyl a tricyclic antidepressant for 10 years because it allows me to I enjoy good sleep I'm not and never have been depressed. I take 7 mg a night and suffer zero (noticeable) side effects. Prof G points to adverse cognitive side effects and recommends switching to a more modern antidepressant. Is this wise when I'm taking a pretty low dose (the norm is 25-50,mg), getting good sleep which is so important and am anything but depressed?
I have hypernychthemeral syndrome, a neurological sleep disorder (as well as MS). I take melatonin & promethazine & apply Lush sleepy cream (largely lavender) at night, & use a light box when I wake up. I take Modafinil to keep me awake in the day, & am trying fampira. I drink Clipper Sleep Tea then stop eating & drinking a couple of hours before bed, & light a lavender candle. I have an air purifier on all night & a white noise machine.
Hi All
I had many years of terrible sleep. I eventually tried only allowing myself the amount of sleep that i used to have before MS. In my case 6/7 hours per night. i use an alarm in the morning, without i will sleep far too long and feel awful all day. I stopped napping in the day, I found that the chronic fatigue that was dragging me down was only made worse by napping. If I feel totally unable to avoid a nap these days I set my phone arm for 15 mins. Ive found not watching too much TV, and finding some kind of activity in the evening that's vaguely constructive and purposeful helps to get me tired in a better way. The sleep rationing and cutting out most naps is hard work, but for me it lifts me out of the lethargy that i used to feel. Its almost as if the chronic fatigue is something that can't be cured with more sleep, I found it only made things worse.
Just my experience but thought I would share.
RV
I try and go to sleep at the same time every night and wake up at the same every morning regardless of weekdays or weekends. This made a massive difference for me. It can be difficult socially when everyone else stays up late on a Saturday night but it works.
I'm a light sleeper and with MS fatigue have rarely woken "refreshed" after a night's sleep. However I have found listening to audio books really helpful in going to sleep. Once you find the right "voice" and type of book (for me it's a low male steady voice like David Suchet) it only takes minutes sometimes and I'm asleep. And the app has settings so it will stop playing automatically after X time.
I also drink a few sips of camomile tea but try to avoid drinking much in the hours before bed to avoid too many loo trips..
Untreated thyroid (low free T3) drove part of my serious sleep disorder. Taking first dose of TH at 3:00 wake allowed me to slowly reinvent a whole nights sleep. I responded negatively to all normal sleep hygiene tactics and sleep meds. In fact blue light actually helped me sleep prior to discovering thyroid issues. I work with a sleep neurologist.
I also have MS Related apnea from a right side face/palate relapse. Unlike the average bear my sleep apnea is worse on left side, rather than back. Still residual swallowing and tongue issues as well.
Last, severe REM apnea (compared to regular apnea levels) can’t be treated by CPAP - requires a BiPAP to increase pressures quickly enough. Without, I wake up heart racing (trying to get oxygen) every time my body tries to hit REM. Before this was figured out, I was hitting serious dementia. Theoretically MS. And perhaps that’s what drives it! No clue.
I may add that you can download an insomnia CBT app for free if you happen to be registered with NHS England. Otherwise [andoid/CBT-i Coach] is less polished but does the same thing for free. Tony Fonda
Great article. My worst MS symptom is severe RLS. I'm trying to raise awareness amongst the medical profession as far too many have zero knowledge. It's a shame that RLS patients have to educate themselves and their GPs and neurologists. Too many doctors are over prescribing Dopamine agonists and increasing the dose when augmentation hits. RLS UK is running a campaign to address this but it'll take ages for any change to happen.
I started using a colouring app called Loóna at bedtime that claimed it could help you sleep better. I was pretty dubious at first, but its made a massive difference - easier to get to sleep and I tend to stay asleep too! I could always do with more, but with a toddler it's not going to happen!
Hi All,
I've been taking Laroxyl a tricyclic antidepressant for 10 years because it allows me to I enjoy good sleep I'm not and never have been depressed. I take 7 mg a night and suffer zero (noticeable) side effects. Prof G points to adverse cognitive side effects and recommends switching to a more modern antidepressant. Is this wise when I'm taking a pretty low dose (the norm is 25-50,mg), getting good sleep which is so important and am anything but depressed?
Unnameable38 min ago
I have hypernychthemeral syndrome, a neurological sleep disorder (as well as MS). I take melatonin & promethazine & apply Lush sleepy cream (largely lavender) at night, & use a light box when I wake up. I take Modafinil to keep me awake in the day, & am trying fampira. I drink Clipper Sleep Tea then stop eating & drinking a couple of hours before bed, & light a lavender candle. I have an air purifier on all night & a white noise machine.
Melatonin!
How do you usually treat nocturia? Aren't all the meds for this anti-cholinergics that might significantly affect cognition?