Many of you will know that I have been battling insomnia for quite a while.
I went to a sleep clinic in August and discovered I also had sleep apnoea. I have been treated by the clinic since then with “ infallible” treatments.
The problem is, I don’t think my sleep is getting any better and part of the treatment has been to restrict my sleep so I am constantly sleep deprived anyway. I am on the verge of giving up the treatment as it is very unpleasant and makes me feel like I don’t even belong on the same planet as “ ordinary” people who sleep. I have become very anxious about my sleep when I was never anxious about anything before.
I would be really interested to know how many of us have steroid induced sleep problems, how bad it is and what solutions you have found to cope with it.
I am currently taking Zolpidem which generally guarantees about 7 hours’ sleep and means I can use a CPAP machine, but the NICE recommendations are to only use it in the short term.
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suzy1959
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I think you need to discuss it in detail with the sleep clinic. I'd lay odds that they assure patients "this will work" because many patients are anxious about it. I do understand the sleep deprivation aspect of the treatment - but I'm also pretty sure it doesn't work for everyone! And if you don't tell them - they don't know.
Becoming very anxious about sleep is the very last thing you need…rather defeats to object of the course/treatment doesn’t it? Sorry to hear it’s not working for you.
Do you mean the Zolpidem or the CPAP machine should only be used short term? Or both? My son uses CPAP machine, but certainly not every night - he spends a couple of nights in hotels most weeks - so doesn’t take machine with him.
I did have issues first few months with high doses of Pred, but luckily soon got back to normal - so can’t offer any miracle cure, and no doubt you’ve read all the posts etc on here over your time on forum. I did post this a couple of years ago, there may be something in the replies -
Sorry to hear you’re struggling Suzy. As you know it’s been a problem for me too. I had a discussion with my GP who was also reluctant to prescribe a sleeping tablet long term. As a result of that discussion I decided to refer for counselling on the NHS and take a course of antidepressants, 15mg daily of Mirtazapine, a low dose. I want to get through this winter without feeling worse. This has been a game changer for me. The antidepressants have taken the edge off my anxiety and help me to sleep after I’ve had a hot bath and done a meditation wind down. After three counselling sessions from home via a Microsoft Teams link, I’m following some strategies to ease stress and anxiety (CBT approach). All is ok for me at the moment, many more good days than bad. Poor sleep exacerbates stress reactions from me, a vicious circle. As I’m tapering successfully so far and working on pacing to diminish stress, things seem to be improving. I was reluctant to take another drug but I was at my wits end, quite depressed and reached a point when needs must. Still have intermittent fatigued days but far more good than bad at the moment. I also have faith that the wobbly exhausting days will be followed by better ones. I appreciate we are all different and the GCA / steroid journey may not be the same but just thought I’d share my experience. I do feel for you. Sleep deprivation is torture. I wish better sleep for you whichever way you are able to get it.
I really struggle with sleep too. I have a CPAP machine and have used it every night for about 7 years I think. It must help as if I try to sleep without it I wake up constantly. Things have been better recently, maybe because I've been taking Naproxen for a back injury or because I've just given up caring whether I sleep or not? At least once a week I don't get any sleep at all but then sleep well the next night. A few times I've even woken up feeling good and refreshed, a feeling I vaguely remember from many many years ago before PMR set in. I've stopped setting the alarm unless I have somewhere to be that day but seem to wake around the time I want to anyway. If I'm not asleep by 4am I take my steroids then and if I am asleep before then I usually wake between 4 and 5 so take them then. Mindfulness things are also helping, doing the body scans and bringing the attention to the breath. Obviously all the hygiene things like no phone or caffeine after 6. Journalling what's going on in my head, like a 'brain dump' seems to send me off to bed calmer too, and writing the to-do list the night before. I can't think what else you can do. I also try and think positive thoughts wehn I go to bed and say affirmations (to myself) such as 'Oh what a lovely bed I've got, I'm going to have a lovely sleep tonight'.
My OH has always dozed in the evenings, and slept ok....he dosen't have PMR, on fact very fit.......but a year ago no sleep whatsoever happened for 2/3 weeks, he was wide awake, he said to me....I don't want to live like this if it carries on!...so I got him an appointment with GP, he admitted they know very little about sleep problems......but prescibed him Matarzapine 15 mg.....has never had a problem since....Hope this helps, but if GP's say they don't know much about sleep well......
I said the same to my husband after months of steroid induced insomnia. Mirtazapine has literally given back part of my life as I pace myself and slowly taper the Prednisolone to keep the GCA under control.
Are you having CBT with the Zolpidem? As DorsetLady and NICE say Zolpidem should only be used short term. I have insomnia because of Steroids, but not sleep apnoea. I read somewhere that up to 85% of people with sleep apnoea are not aware they have it.
Yes, I completed the CBT in November, but keep having problems.
The answer I get from the sleep clinic is to repeat it, but have done that many times because my sleep has never become reliable. Finally, I am thinking that it actually hasn’t worked. They don’t want to hear that. Sleepstation actually say that there is very little evidence that Zolpidem either results in tolerance or dependence in people with genuine insomnia and that NICE’s evidence includes people who use it for other reasons. Nevertheless it is therefore difficult to get an ongoing prescription, so that is not a solution.
Using the CPAP machine disrupts my sleep even more.
I will of course be in touch with the sleep clinic, but was just interested in how many of us suffer and whether there is anything I haven’t thought of yet.
I too have a sleep problem. The more one thinks about it the worse it is. I find reading a few chapters helps me. But then always awake around 4am. Some nights I instictively know I'm not going to sleep all night long, then drop off at 4am. I feel jet lagged for a few days, it's horrible. Try magnesium, may help. I take 2 paracetamols (headache or not) and an antihistamine....sometimes works, another time doesn't. Age has a lot to do with it too. Always up and about by 7:30 am....what a nuisance this is !!
I had a dreadful sleep problem until I got down to a low level of pred. It started the night I first took it. After a few months a GP prescribed zopiclone. I was dubious, as nobody wants ot end up dependent on yet another drug. It also is only supposed to be used sparingly, though the GP said to take it every night, promising 'I'll help you get off it later'. In the end that wasn't necessary because I split it into small fractions and was able to reduce the dose alongside pred until I finally got off it when I was at about 5mg of pred.
I hope you get some relief because it really is like torture.
Sorry to hear you suffer with sleep problems, its so upsetting and obviously makes you feel rubbish!
I had sleep problems before being diagnosed with PMR/GCA - it was made impossible once I was on Pred. Diagnosed about 8 years ago now, and sleep continues to be an issue, never really sure why, sometimes I am uncomfortable, other times my brain will not quiet, maybe its made worse with menopause ....I am also getting older (63) so maybe that doesn't help, whatever is the problem, the result is the same about 4 hours max of decent sleep - the rest just dozing really.
I am on amitriptyline, for fibro pain and to help with sleep - maximum dose I can manage is 25mg, which is quite low. ( I was on Zopiclone for a while but it stopped being effective.) I also take a couple of paracetamol before bed. I read a little to try and relax too.
I have tinnitus so I need a white noise machine going all night; I do believe this helps me to focus on that noise rather than my brain gibberish chatter (I have a trickling brook playing).
I also do not take a clock in the bedroom, I was forever checking the time, looking to see how long i had been struggling to sleep - worrying about getting up etc., so no clock now.
I try and meditate before bed, just to relax myself ....even if its a few minutes.
I would question this sleep depravation treatment if its making you feel worse, routine is very useful. My consultant was concerned that I was sleep deprived which was adding to my pain, which became generalised throughout my body.
Listen to your body, if its not helping then take control and try alternative methods, lots of ideas from group members here ....
i feel your frustration. Me too up every 2 hours 4/5 times a night since steroids. It made me very anxious but beginning to get used to it now after 8 months. Just hope it goes when I get off steroids. The only good thing is I fall asleep quick
Your situation sounds exactly like mine. About 4 hours each night and like you, I am out within seconds as soon as my head hits the pillow. I can usually grab a short nap during the daytime to keep myself going. Just curious to the level of steroid you are currently at? It’s just been 2 months for me and am currently at 12.5 for the next 2 weeks.
I do sympathise. I used to sleep easily but not since starting Pred 5 years ago. Maybe also affected by age and life losses. Now on 6.5mg. I have just read a book on the Circadian Code which I found very interesting. I’m going to try it, hoping it will help with sleep and general health. I’m basically not eating after 6pm, avoid caffeine after midday. No bright lights in evening. Get some direct daylight every day - earlier the better. Might be worth a try. 🤞🏻
I ve had insomnia for many years even before prednisone.It feels like my brain forgot how.My husband is asleep in five minutes and I lay awake til about three in the morning.Sadly iam the first one to wake My Dr gave me sleeping pills but I think they stopped working.I can truly sympathize with you!Keep us updated if you find any solutions.
I have had sleep problems since on the Pred. Moved out of hubbys bed and sleep in another room. He has a CPAP which has been great for him so know how important it is for your own health to treat sleep apnoea.
For me the anxiety was a big issue. It has been accepting that I will wake from the Pred and that’s ok. Listen to radio / sleep / meditation apps. Also meditation Tai chi QinGong in the day to manage stress. Plus so important to listen to own body and nap in the day for timed 20-30 mins.
Being free to do what I need in the night without waking him helped enormously. Together with day naps. Not nearly so bad on lower doses now but bad again when under extra stress.
So they've decided to treat your torture with , umm... More torture ! Lovely!When you say they are restricting your sleep is that by the method of only allowing you to sleep within certain hours with no naps?
Or have they also limited you to a number of hours?
I assume you mean the Zolpidem is only for short term use , is it working ?
If it isn't chat to the GP about trying something else until your pattern is back.
The CPAP machine , my OH was told , is to be used for life , as sleep apnea us usually a lifetime condition , unless by the guidelines, it is associated with excessive weight gain which could be lost , or some sort of airway issue that can be altered with surgery.
My OH was told to use the CPAP machine every time he sleeps , including naps , as the improvement it makes can only be achieved with consistent use. If you have some nights on , some off, it can't have the effect of improving your sleep pattern. The increase in daily oxygen levels can be lost within 48 hours of lack of use , taking it right back to the point you started at.
I've had insomnia since birth . I've never slept more than four hours in a row , unless I had a serious flare of Fatigue or have an infection.
When I was on steroids I often got less than three hours a day , sometimes I couldn't manage more than a nap , so if I'd restricted the times I could sleep I probably wouldn't have slept much at all.
I have Dysautonomia, so that causes me insomnia long term and , oddly , most sleeping tablets or Antidepressant drugs for sleep actually kept me awake . I know , however. many people get help from a night dose of Amitriptyline , others with Mirtazapine , some are helped by an antihistamine taken at night.
I'm taking part in a year long Sleep and Chronic Migraine study at the moment . As part of this we got lessons in changing our sleep behaviour and setting up a bedtime routine. Most of which I was already doing but it was good to know my own research and bed time routine was right.
So , yes , they do say keep to a routine , preparing for sleep hours before bed. But the routine should be a pleasure not a chore or it will not relax you.
Supper and meds first , gentle stretching next . A bath or shower if you wish .
Turn off all devices at least an hour before settling to sleep is the one thing you cannot get out of , phones , their light , their pings ruin sleep, no amount of excuses will change that. Turn off notifications noises , if there is a real emergency ask people to use your landline to tell you. Tell all of your friends and family you won't be reading or answering messages after a certain time and don't be tempted to , you need to switch off from the world and ask whomever is in your room with you to do that too.
Use an alarm clock so that you aren't tempted to look at your phone.
Relaxation breathing exercises for 10-15 minutes , removing light from the room and having a comfortable supportive bed , good room temperature for your needs , asking others in the house to quieten down as you head to bed.
No strong smells in the room , including aromatherapy like lavender etc. which can be used for 15 minutes in another room to promote relaxation but will actually start to stimulate your heart and keep you awake for more than that. This was shown in a study about cardiac stimuli.
A little quiet music and some reading ( of actual books) can be done up to half an hour before you settle down.
Most importantly is the timing .
Yes, you get into bed at the same time and set your alarm for the same time in the morning but this does not mean that you must be asleep during " bed time ".
Anxiety about sleeping just causes more insomnia , so you need to teach yourself that it's not as important to be asleep as it is to rest the body and relax.
Enjoy the rest time and allow yourself to drop off naturally .
If you are awake and feel the need to move about , or go to the loo , you do it quietly , have a little stroll or stretch , then get back in bed , do some slow breathing and rest again.
If you only get a few hours sleep from a restful state it's better than more hours of fitful sleep .
If you are asleep when your alarm goes off and you still feel you need a bit more time you set the alarm again and let yourself sleep for another half hour , but then definitely get up after that , and follow a post bedtime ritual of hydration , breathing and gentle stretching on the bed , breakfast , then some time sat or walking in morning light to improve your oxygen levels and melatonin.
If you need a nap you are allowed one a day but you should only have an hour at the most and set an alarm to keep to that. It is better to have your nap no later than 4 pm.
Alcohol , food additives , and smoking cause bad sleep. Caffeine before 6 pm is ok for some people but if you feel it wakes you up you should limit it and not have any after 3pm. Cardio or high impact exercise should not be done for three hours before bedtime , it increases the heart rate too much to relax but gentle stretches or a stroll after dinner does help.
Basically , the old restriction methods are a bit outdated now , and although they classed them as successful it was generally only because they had a high drop out rate of those it was failing for , only those that could manage to get to the end of treatment are included in the statistics. Sleep Clinics , like Pain Clinic and Physio all have a high record of absenteeism and if you leave without fulfilling an end assessment of the reason why you stopped treatment , failure of treatment isn't noted , you are just left off the list.
It will improve on the steroids , even if it is only a little while on high doses , if you can use the CBT and allow yourself to relax and enjoy being in bed even if you are awake. As soon as I did , even I got more regular sleep and was back to my four hours a night .... Sometimes I've even managed four and a half!
Dear Suzy, I have taken zolpidem for two extended periods of time, the first time for several years and I quit taking it when life was less stressful. Since I got on steroids in November, ‘22, I take 5-10 mgs to combat insomnia. Other than grogginess the next day, I have not noticed ill side effects. But I have heard it can cause sleep-walking and be addictive. Until I can reduce the steroids, I plan to take it as being better than staying awake for hours and being sleep-deprived. That said, I usually need a rest/nap mid-afternoon. Good luck with it.
I had terrible sleep problems when I started prednisone the only thing that worked for me was a magnesium spray. I just put two sprays on each leg each day then gradually reduced to every few days because I didn't need it so often after a while. Really worked for me I bought it from amazon it was called Better For You Magnesium spray.
I have no real advice Suzy except to say I really feel for you at the moment, you have been through some difficult times. So sending a virtual hug❤️
I did go through a very difficult time of no sleep for about 6 months in the last job I had, quite a few years ago.It was very stressful, the journey was very difficult and I just felt I wasn’t coping . I did leave at half term because I really felt my health was suffering. Every night I just lay a wake and then got up to go into a job which I really began to dislike. I tried relaxation, gentle music, all the right procedures before bed etc etc and nothing worked. My doctor was considering putting me on an antidepressant but very slowly as I stopped being worried about whether I had sleep or not, my sleep pattern began to return. I also knew that I didn’t have to get up early the next day and “ perform” and this obviously helped. I do wonder if this sleep therapy is putting a lot of pressure on you to “ get it right” and therefore hindering you rather than helping you. Just a thought. 💐
Hi Suzy, I have had severe sleep problems and I think my steroids have contributed but at the moment I am trying a new solution that does not involve extra medication. I am experimenting with noise fre`uency. I go on You Tube and play Brown noise and there is one link that plays for 3 hours I have it on my phone and place it under my pillow although of course you can plug in earphones when you're up and about. It somehow is so calming and seems to wipe the inside of your head clean that is the only way I can describe it.I have had a non stop headache for almost 6 years and I am not joking this brown noise mutes it/calms it to a very low score. It is not a cure! but it really helps me cope and sleep better. This is the link but you can just type in 'Brown noise in YouTube and there are many audios to listen to. This one is the best one for me. I do hope it helps you. youtube.com/watch?v=UwullCl... best wishes Mavis
Hi Suzy, how wretched for you. I too have insomnia, and only since I started on steroids, 3.5 years ago. Occasionally maybe once a fortnight, I sleep for about 6 hours solid. When this happens I know I will be in for a bad day following, I will feel very tired... a night of sleeping is followed by a day feeling desperately sleepy too.
Usually I sleep for about 1 or 2 hours, then I am awake for usually 2 or 3 hours, but sometimes 4, then sleep for another 2 or 3 hours. Total is usually around 4 or 5, but sometimes only 3. I can't really cope on 3 hours, but I manage on 4. I am retired and often sleep for half to three quarters of an hour at midday.
The only way I cope is to accept that it's caused by the steroids and know in advance they will keep me awake through the day too. Which they do. I relax instead of hating it ( tho I do, secretly) and I read. My doctor has prescribed zopiclone, and I use it only if I have to ... if I have a long drive the next day, and need to match the rest of 'normal' people. I take it maybe monthly, not more.
I know lack of sleep is not good for me and I tried all the standard natural sleep solutions, but it just seems to be chemical driven. Steroids up, sleep down.
I wish you all the luck possible in finding a solution, regards Ann
Thank you so much for all your comments and suggestions. I feel so cared for. What a loving, supportive community we have here!
I now have lots of things to try and my takeaway is that anything causing anxiety is not helpful at all. That includes the sleep clinic treatment. I need to find my own way of dealing with this.( unless the sleep clinic can come up with something else). I think I am now moving on from feeling hopeless and alone to accepting that I have insomnia and need to find comfortable ways to deal with it.
By the way, I am amazed how many of you (us) are managing on so little sleep. It is a scandal that there aren't any better treatments out there for what is a profound and fundamental problem.
An absolute scandal. I know I need the steroids for my GCA but I also need sleep to recover. Catch 22. I see pred as a necessary frenemy, certainly not a friend. The anxiety, insomnia and jitteriness I’ve experienced has been awful. Things are better now I’m on a lower dose and I accepted I had to do something about the insomnia re additional meds. My GP is so supportive. Can you book a double timed appointment with your GP to discuss the situation?
Hello,I don't know whether this is good advice, but I had trouble with itching at night from a dry skin condition and found that anti-histamines had the additional bonus of helping me to get a good night's sleep. Hope this helps.
I've just recently begun 60 mg of Prednisone and yes, sleep is escaping me. Haven't had a night of sleep for over a week now. It did the same when I first began Pred in Jan 2022. It did level off eventually. Without sleep, I'm very "zombie" like, and unable to focus for work. Last night, I did finally get 5 good hours after not sleeping for the last 3 nights. I use Valerian drops, Valerian tea and also Lemon Balm tea, which do help relax. The body is willing, but the mind is not (mind won't shut up) and so, if I do get to sleep, waking at 1 then awake for the rest of the night, up at 5:15ish for work. The body is fatiqued, beyond fatigue. I know it will level off...sooner than later hopefully.
I too have had a lifetime of insomnia. It got so bad after my A levels that I became quite phobic about going to bed. As soon as I got into bed my heart would start racing and i had a terrible feeling of panic. GP prescribed sleeping tablets (mogadon) and I ended up taking 5 a night. I still lay awake all night but spent the day like a zombie. I stopped them. Going to uni cured it, with the late nights and hard work, booze and partying!!More recently going on pred, 40mg, I slept better than I had for a long time, because I was no longer in discomfort. Now the dose is 6mg, my aches and pains are coming back, so I'm finding it hard to sleep again.
I agree with all the comments above, some excellent suggestions, but I would say the most important thing for you is to tackle and overcome your anxiety about sleep. Using a Fitbit has helped me, as it logs your sleep and often, you find that you have slept better than you thought you had. Also keep a notebook and reliable pen next to your bed. Just the thought that you can jot down things is a comfort. Always get up at the same time, even at weekends. Don't try to lie in to catch up, it'll only result in a bad night the following day.
Agree re Fitbit or Smartwatch. The sleep data is interesting and you can spot patterns where you’ve slept more or rested better than you thought. I’m noticing my daily step count is improving as I feel more inclined to keep up daily walking if I’m not so washed out with fatigue.
I, too, have steroid induced sleep issues. I took Zopiclone for al.ost two years. It worked for the first year and then the effectiveness dwindled over time and I did not wish to increase my dose or try another sleep aid. I get anywhere from 3 to 5 hours of sleep. Frankly, I stopped fretting about it. I know how important sleep is to health and recovery but ruminating was just stressful. I keep lots of good reading in the house. I can sometimes get a 1/2 hour nap during the day. I practice various deep breathing techniques and i am feeling better mentally about it all. I tell myself it won't be forever. I notice as I taper my sleep improves a little. This is an instance where avoidance has worked for me. Good luck.
For me, the complete inability to sleep when taking the Prednisilone was another reason not to take it. GP’s will only prescribe Zopiclone for two nights a week as they know that any more than that just doesn’t work. They also only work for up to a year.
I've been having sleep problems ever since AUG 22, when diagnosed with GCA. My GP finally prescribed trazodone. I've been taking 1 tablet per night for the last 5 nights at his suggestion. I've gone from 2 hrs deep sleep per night to 4 hours. So far, I'm elated!!
I have been on CPAP mach for over 15 years....I had insomnia when I was on 60 mg pred., for GCA/PMR 8 months ago...I started sleeping better at 40 mg....now I am at 20 mg pred., and 12 weeks of Actemra and not sleeping well again. This time I have a low platlet count and chest pains at night in bed....My grand daughters bought me a fitbit watch to monitor my sleep. It was working well, showed REM sleep, deep sleep, etc.... In the last week it won't monitor because I don't sleep 3 uninterrupted hours since the platlet thing showed up in blood work....and the chest pains when I lay down..... I am on a veggie diet and get lots of gas and hope that is what the chest pains are from...
Hi Joseph, not a comment about sleeping but if you are getting unexplained chest pains "I hope that is what the chest pains are from" can I suggest that you get that checked out ASAP to find out one way or the other. It is too important to leave unchecked,
I don't suffer from insomnia as such but for years I've had broken sleep, i.e. up for a pee several times a night, then back to a warm bed and off I go again. However, I also take half a sleep aid tablet called Unisom and have done for several years. Basically it's an antihistamine, the first generation that makes you drowsy, and it works for me. I've managed to avoid sleeping tablets by taking these.
I agree 100% about the Fitbit- it takes away the anxiety of trying to count how many hours' sleep . After a lifetime of insomnia, I'm now getting a steady 6-8 hours' sleep. I think old age helps (I'm 77), the brain seems to slow down and I feel more restful.
I am in the US and was diagnosed with PMR in Dec of 2022. Started on 15 mg and moved to 20 mg until now when I started a slow taper. That said, my job was a sales job traveling in the US and sometimes other countries for many years. The travel was when my sleep issues started. I tried a lot of the natural things along with Melatonin. The magic number is 4 mgs of Melatonin , which helped me get sleepy enough to go to bed, but didn't keep me asleep.......I still waked up and tossed and turned. Finally, I talked to my doctor and he prescribed 15 mgs of Temazepam. I have taken the Melatonin and half of a Temazepam for the past 20 years (I open the capsule and put approximately 1/2 of the powder on my tongue) and worked well for years. I never abused it, but certainly I was and am addicted. But it is a very old drug and it causes me no "hangover" effect or nightmares like some of the other drugs do. When I got PMR, it didn't seem to be enough and I, too, started to have many a sleepless nights. I decided to try upping the dose to the full capsule and it was the miracle I needed. I discussed with my dr. again, and he said you have to get rest and 15 mgs is the maximum I should take. I was always slightly like a hummingbird anyway (not anymore - I am 71!). I don't know if any doctor would prescribe it in the UK or if it is ill advised for sleep apnea, but it is worth an ask. My dr. said out of all the drugs out there, he was glad this one worked as it has a very safe record. That said, I know drs worry about falling and frailty, but I have had multiple occasions where my husband had to wake me up, or an alarm went off by accident, and I can become fully awake.........so it works for me. I just wanted to offer it up as I know how horrible it is not to have sleep - sign me addicted and okay with it!! Very best of luck with getting a good night's sleep everynight!!
There are a lot of us out there sleeping badly! It's sort of comforting to know we're not alone. I had trouble staying asleep (though not dropping off initially) even before starting on Prednisone, but on 40 mg it was much worse. Tapering helps moderately, but I NEVER get a full uninterrupted night's sleep. I've tried Zopiclone, half a 7.5 mg tablet, at bedtime, but only intermittently when at my wit's end. It gives me 5 hours at a stretch and leaves me feeling much more relaxed the following day, but no use over more than a day or two as it seems to progressively less effective.
Has anyone tried valerian? I'm beginning a month's course (organic supplement) and I've read that you have to persevere for a few weeks before feeling the benefit. So far no perceptible difference, but I'll keep going in the hope that this will help.
Reading tends to send me back to sleep, but 5 minutes later my brain is in turmoil again and as I live near the coast the seagulls don't seem to sleep much either. They sqauwk loudly at intervals all night long until the blackbirds start up with their dawn chorus. Never a dull moment!
So many of us with sleep issues. I needed meds to sleep in the beginning while on high dose Prednisone, and stopped cold turkey several months later.
I still have issues, mostly waking at 2 or 3 in the morning for 30 minutes to an hour, sometimes longer. I don't fight it any more and may read for a bit or go through all the various relaxation techniques. I'm also up to the loo three or four times a night, but a lot of that has to do with chronic gut issues related to celiac disease and microscopic colitis.
I'm lucky if I get 6 to 61/2 hours of broken sleep, but seem to manage OK on that. Being retired has its advantages and naps after lunch are often wonderful. I limit those to 30 to 45 minutes.
Occasionally, I get 8 hours with fewer wakeups and love it.
I talked to my GP about going back on sleep medication, but decided against it when he said recent research suggests a link between sleeping meds and altzhimers.
On the CPAP issue, hubby has been on one for almost 25 years and simply can't sleep or even nap without it. He has a small portable battery operated one for traveling so he can sleep on planes.
Not only does he start snoring within seconds of dropping off, but will stop breathing. The latter is why I sent him off to the sleep clinic years ago.
I simply can't comprehend what the sleep clinic is telling you. However, there may be new research on the use of the machines and/or side effects.
Hello, I really believe that a sleeping problem can be caused by an illness. My husband has been diagnosed with poliarthritis ( without pain but completely immobile). The night after he got his first medicine ( prendisolon), is was the first time since months (/years) he slept well and since then his sleeping problem has been solved ( already 7 months now).
Hi Suzy, how absolutely awful for you. Can I recommend a book called "Your Conscious Brain - How it all works and Why" by Jan de Vinter available on Amazon. There is a lot in the book about sleep problems - the underlying cause is far too much anxiety and stress in your life and the book details a simple process to reduce the stress and at no time take any medication at all. The book is a good read. Good luck with reducing stress!
Oh, my goodness, I've been using a CPAP for about 18 years. I LOVE it, my mask covers nose and mouth because I'm a mouth breather. I can't wait to put that mask on and 99.9 per cent of the time, I'm asleep in about 15-20 minutes for 8-9 hours. It keeps your airway open. I used to wake always and never realized it was because I was coughing and choking.
I'd break their arm if anyone tried to take my machine away. Women are much better about getting accustomed to the appliance. I say this because my husband threw his in the trash and still doesn't sleep.
Please pursue this not only for REM sleep but it makes your heart work harder and you get less oxygen to your brain. My best to you...💞
I edited to add that when I was on high-dose steroids, 80 and 60mg, my cat and I walked the halls for hours too....but if I could get some sleep during the day, I took it gladly. Is the NHS reluctant to prescribe CPAP? Even in the states, they have you 'rent' the equipment for a bit to see if you will use it. The sleep lab can wirelessly keep track of your usage if that is required. Good fortune...again💞
I own my CPAP machine and I do like using it now. The problem is that it does disrupt my fragile sleep at the moment so I am trying to find ways to get used to it. With the help of a sleeping pill I am managing to spend more time with it on. A work in progress!
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Insomnia
insomnia
Another frightening thing is happening to me. 
Night spasms and insomnia
