I was using OTC sleep remedies for years when I was working. Too many variations due to international travel and also late evening entertaining. Once retired I had problems sleeping if I didn’t take them, so asked my marvellous GP to prescribe. He asked me to complete an online sleep quality questionnaire which I did.
Started me on the lowest dose Amitriptyline 5mg then 10mg which does the job. Of course by being asleep the Nocturia problem was resolved. So, all good.
Also, it’s worth noting that most of my issues with MS have been managed by my GP, following very strong evidence based suggestions by me.
I am not at all surprised by these results. Sleep disruption can be caused by so many MS symptoms but neurologists never ask about sleep quality or which MS symptoms cause sleep disruption. There are treatments, which will differ depending on the cause of the disruption.
Luckily, I know to research my own condition and push for the correct treatment. But not everyone has the confidence or know how to do that, so they will receive poor treatment and fall through the net. Sleep quality affects MS disease progress and can cause co morbidities like HBP, heart disease, diabetes and anxiety and depression. GPs and neurologists need to be trained better in sleep disorders.
I have an exercise bike used daily. Not to create a sweat, but to give those leg muscles something to think about and have at least a minor cardiovascular workout. Not sure how useful it is but at least I’m doing something. As ex army fit, my lack of mobility is particularly frustrating...so at least I’m done something.
Hey! We’re a crew of walking zombies. :) I have this down now to 2 sleepless nights, then I’m so exhausted I may get 4 consecutive hours the third night. Forget sleep medications! For me, worthless. Supposed to go for sleep study at end of month and finally have MRI ordered. Interestingly, I was at my former neuro today for migraine, and he is a Parkinson’s specialist. I saw an information pamphlet recommending melatonin (for one thing) for Parkinson’s. Who knew? Best wishes to all.
Would be very interested to know how this compares with the general population. I'm not sure I know many people who would say their sleep habits were good
I feel like there’s an epidemic of poor sleep here in the US, and probably the UK as well, as a byproduct of modern expectations. It definitely complicates teasing apart the metaphorical chickens and eggs!
I think you’re right. I have my phone beside my bed, but turned over in case the screen lights up. Many people are on them late into the night...and wonder why they have sleep problems :)
I'm not surprised by these results either. Stress and nocturia are my enemies. I have to work very hard at times as it feels like my ms wants to swap my days and nights. The only thing that "turns the brain off" is an audiobook, but it has to be at a volume where I have to concentrate on hearing it. I set a timer so the book stops after an hour and usually this works, but if I'm anxious or my bladder is misbehaving, forget it.
My ms nurse is the only person who discusses this issue with me, and does so at every visit. I take 50mg of Amitriptyline at night but this is for chronic nerve pain, not sleep.
Nobody else seems to see sleep disturbance as a problem so I'm very glad to see it being investigated like any other symptom, so thank you.
This is such an important area and any further information and help is welcome. Some help is not always easy to access - for example I am aware CBTI exists and would like to try it but have only seen paid for web resources. I and probably many others don't want to take/rely on drugs to achieve what should be a pleasant, natural and restorative element of life. Also aware that poor sleep is probably one of the side effects of society's 21st century lifestyle!
How would you comment on falling asleep too fast? - within 30 seconds, sometimes faster. BMI 21, female in early 30's. Always have been like this pre/post MS diagnosis. Doesn't seem to have sleep apnea issues otherwise.
I was using OTC sleep remedies for years when I was working. Too many variations due to international travel and also late evening entertaining. Once retired I had problems sleeping if I didn’t take them, so asked my marvellous GP to prescribe. He asked me to complete an online sleep quality questionnaire which I did.
Started me on the lowest dose Amitriptyline 5mg then 10mg which does the job. Of course by being asleep the Nocturia problem was resolved. So, all good.
Also, it’s worth noting that most of my issues with MS have been managed by my GP, following very strong evidence based suggestions by me.
Correction. Amitriptyline 10mg > 20mg.
I am not at all surprised by these results. Sleep disruption can be caused by so many MS symptoms but neurologists never ask about sleep quality or which MS symptoms cause sleep disruption. There are treatments, which will differ depending on the cause of the disruption.
Luckily, I know to research my own condition and push for the correct treatment. But not everyone has the confidence or know how to do that, so they will receive poor treatment and fall through the net. Sleep quality affects MS disease progress and can cause co morbidities like HBP, heart disease, diabetes and anxiety and depression. GPs and neurologists need to be trained better in sleep disorders.
J. - Yes. I am very concerned re heart disease. And becoming feeling too exhausted to move as much as I can/should.
I have an exercise bike used daily. Not to create a sweat, but to give those leg muscles something to think about and have at least a minor cardiovascular workout. Not sure how useful it is but at least I’m doing something. As ex army fit, my lack of mobility is particularly frustrating...so at least I’m done something.
Hey! We’re a crew of walking zombies. :) I have this down now to 2 sleepless nights, then I’m so exhausted I may get 4 consecutive hours the third night. Forget sleep medications! For me, worthless. Supposed to go for sleep study at end of month and finally have MRI ordered. Interestingly, I was at my former neuro today for migraine, and he is a Parkinson’s specialist. I saw an information pamphlet recommending melatonin (for one thing) for Parkinson’s. Who knew? Best wishes to all.
Would be very interested to know how this compares with the general population. I'm not sure I know many people who would say their sleep habits were good
I feel like there’s an epidemic of poor sleep here in the US, and probably the UK as well, as a byproduct of modern expectations. It definitely complicates teasing apart the metaphorical chickens and eggs!
Yes haha. All the screens bleaching out the night!
I think you’re right. I have my phone beside my bed, but turned over in case the screen lights up. Many people are on them late into the night...and wonder why they have sleep problems :)
It’s hard for me to distinguish my daytime sleepiness from fatigue anymore since they both contribute to one another!
Exactly 😂😭
Hi
I'm not surprised by these results either. Stress and nocturia are my enemies. I have to work very hard at times as it feels like my ms wants to swap my days and nights. The only thing that "turns the brain off" is an audiobook, but it has to be at a volume where I have to concentrate on hearing it. I set a timer so the book stops after an hour and usually this works, but if I'm anxious or my bladder is misbehaving, forget it.
My ms nurse is the only person who discusses this issue with me, and does so at every visit. I take 50mg of Amitriptyline at night but this is for chronic nerve pain, not sleep.
Nobody else seems to see sleep disturbance as a problem so I'm very glad to see it being investigated like any other symptom, so thank you.
Looking forward to seeing you at the Chilterns neuro centre on the 2nd November perhaps this subject will come up in the questions.
This is such an important area and any further information and help is welcome. Some help is not always easy to access - for example I am aware CBTI exists and would like to try it but have only seen paid for web resources. I and probably many others don't want to take/rely on drugs to achieve what should be a pleasant, natural and restorative element of life. Also aware that poor sleep is probably one of the side effects of society's 21st century lifestyle!
Are you in the UK?
How would you comment on falling asleep too fast? - within 30 seconds, sometimes faster. BMI 21, female in early 30's. Always have been like this pre/post MS diagnosis. Doesn't seem to have sleep apnea issues otherwise.