You mentioned daytime napping briefly (and as a potential problem), but I think the topic deserves attention. I have secondary MS, and I take two naps/rest a day, at 12 noon and 5 PM, to manage fatigue. I set my alarm for 20 minutes, and rarely actually fall asleep. But, lying down flat with my eyes closed and in a restful environment makes all the difference to my level of fatigue. Perhaps others have similar experiences? The key thing seems to be not to go beyond 20 minutes or so.
Hello Andrew- Is the relief in sleepiness, or body-muscular fatigue? I take naps for sleepiness and awake more alert (even though you are not supposed to do it). But my sleep at night sucks.
Hmm. I nap at approximately the same time every day, and that helps to address both mental and body fatigue. But your question raises the tricky issue of physical fatigue, mental fatigue, muscular fatigue and the interplay between them. If those are even the right categories. These days, I am most conscious of the very direct effect that overdoing things physically has in quickly leading to systemic fatigue (mental and physical). That can include even relatively gentle exercise of body parts that are particularly weak (my right arm and hand for example, in my case).
Thanks Andrew. For me, sleepiness affects things like being able to write competently; being able to drive safely (important). Although body fatigue can be important too, such as walking and falling. But gardening can wait till later. Might make a good dissertation topic if it hasn't already. How are the two experienced and what do they affect? Good day-
Good thoughts, Tom, thanks. Driving is an interesting one. Like for naps, I set a time limit. I generally don't drive for more than 45 minutes, although that can stretch to an hour if I'm well rested. Driving seems like it's both mental and physical, involving multiple systems - eyes, hands/arms/legs, brain (processing all the above). I have an adapted car (I'm weak on one side of my body), so that adds another area of complexity and risk.
Actually, come to think about it, sustained processing of a lot of auditory/visual/physical signals together can get fatiguing quickly (e.g. a noisy party). I can use up a lot of reserves fast in those situations.
I answered in my survey that I take diphenhydramine and clonazepam, but didn't mention in the comments that I limit my usage- Regular dose diphen. on weekends (2 days) 5 months a year along with regular dose clonaz. The clonaz. seems to deactivate overactive nervous system like spams, overactiove bladder and urgency while I am sleeping, and diphen increases sleepiness without question. So both together ensure I will get at least moderate rest before I'm active on the weekend days in the summer. I know that using them often is not good.
Sleep problems began when I was being attacked by my employer for having MS, way back in the beginning. I won the battle but the sleep problem never resolved 100%.
My understanding also, is that as one ages, sleep demand decreases (or something like that). Is that true?
Sleep physiologists define a sleep latency of more than 20 minutes as being abnormal, i.e. insomnia. But in my opinion insomnia is in the eye of the beholder. If you don't have problem taking 30 minutes to fall asleep then you don't have insomnia.
I watch TV for a half hour or so, while eating sugar free chocolate (both in bed). When the candy is finished I turn off the TV and am asleep within 5 minutes. So is that insomnia?
Aside of the lifestyle interventions above (most of which you should follow anyway), on the medication side I found THC (well, I guess THC and CBD as sativex is a mix but CBD alone did not do much at all) to be fairly effective.
Also, in principle slow release tizanidine did a decent job but it's been unavailable for more than a year now :-(
I briefly tried trazodone and hated it - no effect on insomnia but massive morning grogginess.
I can also recommend a decent health wearable (I like Garmin for the long battery life making it realistic to wear it 24/7). While the sleep stage data is pretty universally useless, HRV and resting heart rate is very interesting. Especially the impact of booze on the two measures gave me and a lot of friends a pause (and most subsequently reduced .booze quite a bit)..
Can readers recommend a secular evidence-based ACT or mindfulness program that worked for them?
I have just signed-up to the Sam Harris app and am not super amazed. I am keen to learn/practice meditation online or in person without all the ritualistic stuff.
In general, I can recommend Waking Up (and you'd be hard pushed to get more secular than Sam Harris). Did not do too much sleep though (in fairness, I did not try for that too long, either)
I've had insomnia ever since I was diagnosed in 1986. Doctors never discussed it with me other than prescribing Ambien which worked & was addicting for at least 15:years. Despite going to a new MS Center at the 15 year mark insomnia still wasn't discussed until I asked to be weaned off Ambien. They insisted after Ambien I should take a low dose of Xanax, .25 mg/night. I was told my my old NP (who I trusted, June Halper) to never take melatonin. I'm 65 now & I get a 5 or 6 hour sleep every other night. The other nights I'm up all night. I do my best to prepare for sleep: meditation, lowering lights, a cool temperature, no caffeine. Insomnia is maddening because it reduces my productivity in my work and my walking & balance the next day. A few things Prof G discussed I'd like to look into.
I the only reason I didn't fill in the survey as my answers made it sound like I didn't have a sleep problem when I do. I actually sleep very well and get 8 hours a more a night. But the only reason for this is I drink some wine before I go to bed [I don't go over the recommended units]. If I don't do this I can't switch my brain off. I don't have negative thoughts, just lots of different thoughts, plans, idea etc. I also sometimes get spasm which do not aid sleep. I don't get the often enough to justify the dopey effect the prescription drugs for this create. I've tried all the sleep hygiene stuff, I do a lot of exercise and don't have stiffness. I never nap.
I know it's possibly the greatest answer but wine does work.
I know that it's important to be in a very dark and cool room to sleep, going to sleep at the same time every night. And no sounds, except white/brown/pink noise or relaxing music at low volume (I have been listening to the same David Parsons music to help me sleep since 1986). Also very important to wake up at the same time every morning, and expose yourself to as much natural light as possible when waking. If you use an alarm to wake up, try to use a gentle alarm or one that successively gets louder instead of that is just aggressively loud.
Is struggling to get to bed considered insomnia? I get to sleep ok once in bed with the help of listening to an audio book on a timer but I can really struggle/procrastinate to get to bed.
not listening to my body when it says have a lazy moment
changes in temperature i.e. too hot / summer (hahaha)
all make it worse. for example I had a very busy weekend a couple of weeks ago, after a busy work week, and it has taken 10days to get myself back to a decent sleep pattern. I was getting 3hrs sleep and falling asleep after the first client of the day I was so drained. It took several days of listening to my body and just sitting staring into space if I wanted to, deep relaxation to get my sleep back on track.
I'm a night owl anyways and tend to find that my routine is bed 11.30, read until 00.30 then lights out.
herbal tea
meditation
counting backwards from 100 to 0
cuddling the cat for 10mins
writing down my list of things to do the next day so I'm not overthinking at sleep time
all help me sleep better, although the herbal tea makes me feel urgh the next morning.
I've had foot and leg spasticity for a couple of months, again related to busy lifestyle recently and also developed vulvodynia which becomes worse at bed time, laying down gives severe sharp shocks, sharp enough to make my leg jerk. I refuse to become a waking zombie on amitriptyline or gabapentin so am trying to work through it will willpower, canestan, co-codamol on the nights it is unbearable and a lidocaine med., not all at the same time I hasten to add, although the willpower is a given. Fingers crossed. The nights my sleep is good and I get to sleep before it starts then I'm fine, but if it starts prior to me getting to sleep I'm awake for hours.
For me, mental fortitude is the biggest thing, how I look at insomnia at the time. If I allow myself to blow it out of all proportion then it becomes an issue. If I tell myself to look forward to the time it has passed then I find it passes faster. Regardless, a week of 3hrs sleep a night is not fun.
The big issues is being passed from professional to another, see your GP, see your neurologist...
I have found the best solution for me is to be medicated. I take 1 zoom lone, 1 and a half quatiapine (about 32.5mg) and hrt. . It has worked so well and sleep is no longer an unachievable goal
I have suffered from insomnia for pver 20 years. Tried Melatonin. Lightboxes, acupuncture, prescriptions meds. I have now been on Zolpidem 5mg and Nabilone 500mcg for 24 years. I know I am now addicted - was told in the beginning that Zolpidem wasn't addictive - had previously been on temazepan.
Was diagnosed with insomnia prior to my MS diagnosis.. Asked my doc about coming off it once but my life is particularly stressful (have a severely disabled husband) and she thought it would be a terrible idea for me. It does worry me that I rely on pills as think they can cause dementia. Think I may ask my doctor about Sleepio.
Insomnia is defined as difficulty initiating or maintaining sleep and can be a symptom or a disorder. If a disorder, insomnia is associated with a feeling of distress about poor sleep, and it disrupts social or occupational functioning.
You mentioned daytime napping briefly (and as a potential problem), but I think the topic deserves attention. I have secondary MS, and I take two naps/rest a day, at 12 noon and 5 PM, to manage fatigue. I set my alarm for 20 minutes, and rarely actually fall asleep. But, lying down flat with my eyes closed and in a restful environment makes all the difference to my level of fatigue. Perhaps others have similar experiences? The key thing seems to be not to go beyond 20 minutes or so.
Hello Andrew- Is the relief in sleepiness, or body-muscular fatigue? I take naps for sleepiness and awake more alert (even though you are not supposed to do it). But my sleep at night sucks.
Hmm. I nap at approximately the same time every day, and that helps to address both mental and body fatigue. But your question raises the tricky issue of physical fatigue, mental fatigue, muscular fatigue and the interplay between them. If those are even the right categories. These days, I am most conscious of the very direct effect that overdoing things physically has in quickly leading to systemic fatigue (mental and physical). That can include even relatively gentle exercise of body parts that are particularly weak (my right arm and hand for example, in my case).
Thanks Andrew. For me, sleepiness affects things like being able to write competently; being able to drive safely (important). Although body fatigue can be important too, such as walking and falling. But gardening can wait till later. Might make a good dissertation topic if it hasn't already. How are the two experienced and what do they affect? Good day-
Good thoughts, Tom, thanks. Driving is an interesting one. Like for naps, I set a time limit. I generally don't drive for more than 45 minutes, although that can stretch to an hour if I'm well rested. Driving seems like it's both mental and physical, involving multiple systems - eyes, hands/arms/legs, brain (processing all the above). I have an adapted car (I'm weak on one side of my body), so that adds another area of complexity and risk.
Actually, come to think about it, sustained processing of a lot of auditory/visual/physical signals together can get fatiguing quickly (e.g. a noisy party). I can use up a lot of reserves fast in those situations.
Hang in there and I will too :)
I answered in my survey that I take diphenhydramine and clonazepam, but didn't mention in the comments that I limit my usage- Regular dose diphen. on weekends (2 days) 5 months a year along with regular dose clonaz. The clonaz. seems to deactivate overactive nervous system like spams, overactiove bladder and urgency while I am sleeping, and diphen increases sleepiness without question. So both together ensure I will get at least moderate rest before I'm active on the weekend days in the summer. I know that using them often is not good.
Sleep problems began when I was being attacked by my employer for having MS, way back in the beginning. I won the battle but the sleep problem never resolved 100%.
My understanding also, is that as one ages, sleep demand decreases (or something like that). Is that true?
Sleep duration drops off with age.
Please see: https://www.research.colostate.edu/healthyagingcenter/aging-basics/sleep/
Thanks but is difficulty getting to sleep for about 1/2 hour 1 hour .... maintaining it waking up after about 1/2 hour 1 hour , 1 1/2 ..?.
Sleep physiologists define a sleep latency of more than 20 minutes as being abnormal, i.e. insomnia. But in my opinion insomnia is in the eye of the beholder. If you don't have problem taking 30 minutes to fall asleep then you don't have insomnia.
I watch TV for a half hour or so, while eating sugar free chocolate (both in bed). When the candy is finished I turn off the TV and am asleep within 5 minutes. So is that insomnia?
No - you fall asleep in 5 minutes. Sleep latency refers to when you decide to go to sleep and when you fall asleep.
Aside of the lifestyle interventions above (most of which you should follow anyway), on the medication side I found THC (well, I guess THC and CBD as sativex is a mix but CBD alone did not do much at all) to be fairly effective.
Also, in principle slow release tizanidine did a decent job but it's been unavailable for more than a year now :-(
I briefly tried trazodone and hated it - no effect on insomnia but massive morning grogginess.
For anyone trying to use Melatonin, I recommend reading https://slatestarcodex.com/2018/07/10/melatonin-much-more-than-you-wanted-to-know/ as it is more than a little weird.
I can also recommend a decent health wearable (I like Garmin for the long battery life making it realistic to wear it 24/7). While the sleep stage data is pretty universally useless, HRV and resting heart rate is very interesting. Especially the impact of booze on the two measures gave me and a lot of friends a pause (and most subsequently reduced .booze quite a bit)..
Nice work PG
Can readers recommend a secular evidence-based ACT or mindfulness program that worked for them?
I have just signed-up to the Sam Harris app and am not super amazed. I am keen to learn/practice meditation online or in person without all the ritualistic stuff.
One of my family members swears by Headspace for sleep.
In general, I can recommend Waking Up (and you'd be hard pushed to get more secular than Sam Harris). Did not do too much sleep though (in fairness, I did not try for that too long, either)
I use Qigong Meditation on You Tube. There is an insomnia flow which lasts around 8 to 10 mins. I find it helps. It's free too :)
I've had insomnia ever since I was diagnosed in 1986. Doctors never discussed it with me other than prescribing Ambien which worked & was addicting for at least 15:years. Despite going to a new MS Center at the 15 year mark insomnia still wasn't discussed until I asked to be weaned off Ambien. They insisted after Ambien I should take a low dose of Xanax, .25 mg/night. I was told my my old NP (who I trusted, June Halper) to never take melatonin. I'm 65 now & I get a 5 or 6 hour sleep every other night. The other nights I'm up all night. I do my best to prepare for sleep: meditation, lowering lights, a cool temperature, no caffeine. Insomnia is maddening because it reduces my productivity in my work and my walking & balance the next day. A few things Prof G discussed I'd like to look into.
P S. How do I get to the survey? Thank you.
Cathy Chester
This is the link for the survey:
https://docs.google.com/forms/d/e/1FAIpQLScHEzeIYFHAMBZgarwcZphEcxZUqqfkrJ7UvUVV31cbBYHsIQ/viewform
P.S. I also take necessary daily naps.
Can you wean yourself off daily naps? It may improve your sleep at night, and try exercise if possible.
I wish I could wean off naps but my body literally dictates it, around 2pm each day. It feels as if it's shutting down.
I the only reason I didn't fill in the survey as my answers made it sound like I didn't have a sleep problem when I do. I actually sleep very well and get 8 hours a more a night. But the only reason for this is I drink some wine before I go to bed [I don't go over the recommended units]. If I don't do this I can't switch my brain off. I don't have negative thoughts, just lots of different thoughts, plans, idea etc. I also sometimes get spasm which do not aid sleep. I don't get the often enough to justify the dopey effect the prescription drugs for this create. I've tried all the sleep hygiene stuff, I do a lot of exercise and don't have stiffness. I never nap.
I know it's possibly the greatest answer but wine does work.
I know that it's important to be in a very dark and cool room to sleep, going to sleep at the same time every night. And no sounds, except white/brown/pink noise or relaxing music at low volume (I have been listening to the same David Parsons music to help me sleep since 1986). Also very important to wake up at the same time every morning, and expose yourself to as much natural light as possible when waking. If you use an alarm to wake up, try to use a gentle alarm or one that successively gets louder instead of that is just aggressively loud.
Is struggling to get to bed considered insomnia? I get to sleep ok once in bed with the help of listening to an audio book on a timer but I can really struggle/procrastinate to get to bed.
Insomnia comes and goes for me but I find that
alcohol
doing too much over a period of time
not listening to my body when it says have a lazy moment
changes in temperature i.e. too hot / summer (hahaha)
all make it worse. for example I had a very busy weekend a couple of weeks ago, after a busy work week, and it has taken 10days to get myself back to a decent sleep pattern. I was getting 3hrs sleep and falling asleep after the first client of the day I was so drained. It took several days of listening to my body and just sitting staring into space if I wanted to, deep relaxation to get my sleep back on track.
I'm a night owl anyways and tend to find that my routine is bed 11.30, read until 00.30 then lights out.
herbal tea
meditation
counting backwards from 100 to 0
cuddling the cat for 10mins
writing down my list of things to do the next day so I'm not overthinking at sleep time
all help me sleep better, although the herbal tea makes me feel urgh the next morning.
I've had foot and leg spasticity for a couple of months, again related to busy lifestyle recently and also developed vulvodynia which becomes worse at bed time, laying down gives severe sharp shocks, sharp enough to make my leg jerk. I refuse to become a waking zombie on amitriptyline or gabapentin so am trying to work through it will willpower, canestan, co-codamol on the nights it is unbearable and a lidocaine med., not all at the same time I hasten to add, although the willpower is a given. Fingers crossed. The nights my sleep is good and I get to sleep before it starts then I'm fine, but if it starts prior to me getting to sleep I'm awake for hours.
For me, mental fortitude is the biggest thing, how I look at insomnia at the time. If I allow myself to blow it out of all proportion then it becomes an issue. If I tell myself to look forward to the time it has passed then I find it passes faster. Regardless, a week of 3hrs sleep a night is not fun.
The big issues is being passed from professional to another, see your GP, see your neurologist...
One thing I find very useful is Qigong Meditation on YouTube. There is an insomnia flow and it helps me every time.
I have batted insomnia for years
I have found the best solution for me is to be medicated. I take 1 zoom lone, 1 and a half quatiapine (about 32.5mg) and hrt. . It has worked so well and sleep is no longer an unachievable goal
Sorry zopiclone
Insomnia sucks.
Is it true that many people with MS have sleep apnea? Is it connected to neurological issues?
Please see:
https://gavingiovannoni.substack.com/p/why-am-i-so-fatigued
https://gavingiovannoni.substack.com/p/sleep-glorious-sleep
https://gavingiovannoni.substack.com/p/are-you-sleep-deprived
I have suffered from insomnia for pver 20 years. Tried Melatonin. Lightboxes, acupuncture, prescriptions meds. I have now been on Zolpidem 5mg and Nabilone 500mcg for 24 years. I know I am now addicted - was told in the beginning that Zolpidem wasn't addictive - had previously been on temazepan.
Was diagnosed with insomnia prior to my MS diagnosis.. Asked my doc about coming off it once but my life is particularly stressful (have a severely disabled husband) and she thought it would be a terrible idea for me. It does worry me that I rely on pills as think they can cause dementia. Think I may ask my doctor about Sleepio.
How is insomnia actually defined here in terms of lack of sleep or sleep disturbance?
Insomnia is defined as difficulty initiating or maintaining sleep and can be a symptom or a disorder. If a disorder, insomnia is associated with a feeling of distress about poor sleep, and it disrupts social or occupational functioning.
Thanks for clarifying. I have no problem in it taking 30+ minutes I go into mindfulness mode and fall asleep whenever. I didn't think I was insomniac.
You are not as it does not cause distress and does not appear to interfere with your occupational and social functioning.