not sleeping: Hello again. Just wondered if other... - PMRGCAuk

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not sleeping

jenerino profile image
jenerino

Hello again. Just wondered if other folks on here suffer from just not sleeping. Over active brain kicks in the moment I try and sleep. Am averaging about 4-6 hours a night with the result that by about 2.00pm in the afternoon, I feel wiped out. If you do have the same problem, can you let me know what you do to alleviate it? I have tried everything I can think of before bedding down for the night...nothing seems to work. Thank you xxx

87 Replies

Prednisone can make you too 'alert' especially if you are on high doses or just not used to it. I used an over the counter antihistamine type sleeping tab - or half then only a quarter of one for the period when I really could not sleep - it helped. Not everyone would recommend this - it is meant to be short-term only but nothing else worked for me and I just had to have the sleep or exhaustion really exacerbated the fatigue I already had. No doubt people have all kinds of behaviours and remedies and also recommendations for when you should take your Pred - all worth listening to - this is just what helped me. I am at a lower dose now - 12 mg and no longer need to take this medication.

Best wishes

Rimmy

jenerino profile image
jenerino in reply to Rimmy

Thanks Rimmy. Could be worth a go. x

Thaiboxing profile image
Thaiboxing in reply to Rimmy

I

Hidden profile image
Hidden

Hi jenerino

You’ll find quite a few on here who can’t sleep, as you’ll often notice they reply to posts in the night.

Distraction techniques are what you need, sometimes l can’t sleep, so l prefer to catch up on the news or read so as to not lay there with all sorts of things whizzing round in my mind.

Apart from the obvious like making sure you’re warm enough, comfortable & tired when you go to bed. I’m sure someone will come along later with more tips.

Best Wishes

MrsN

jenerino profile image
jenerino in reply to Hidden

Thanks MrsN. x

Thaiboxing profile image
Thaiboxing in reply to Hidden

I also sit up half the night reading or just laying there I do take half a sleeping tablet some nights just to get me off for a short time glad i am not the only one with no sleep all the best Mrs J

jenerino profile image
jenerino in reply to Thaiboxing

Thank you.x

I have the same problem often getting only 2 to 3 hours. I usually feel OK in the morning but need to sleep after lunch. I tried keeping to a regular rutine so I usually knew what time of day it was when I woke up.

As I reduced pred things did not improve so I tried splitting the dose, 2/3 in am and 1/3rd in evening. I was waking up in pain so then tried 1/3rd in morning, not much difference. Last week I started taking all the pred ( mainly coated) with my evening meal.This seems to work.

I am trying to reduce from 9.5mg ( 1x5mg, 1x2.5mg,2x1mg ) to 9mg. If I take 1x5mg plus 4x1mg I find I have some digestive acid on lying down but have had success on 1x5mg plus 1x2.5mg plus 11/2 1mg.

Hope this is of some help to you, as I am still experimenting I can't say with any confidence.

jenerino profile image
jenerino in reply to scats

Thanks Scats. All things are worth a go. x

Its nearly 2 am, and one of my "sleep less" nights.

About half my nights are interrupted, but i have the luxury of napping in day time...so no harm done.

Usually I get out of bed, have a cup of warm beverage, catch up on emails, news, or my latest novel. Long ago I stopped fretting about topsy turvy sleep patterns, and just adapt.

Good luck to you..

jenerino profile image
jenerino in reply to Purplecrow

Thanks Purplecrow. Yes I guess I just need to adjust and stop fretting about it x

I just fixed myself a cup of warm sweet milk, with vanilla. So relaxing, and the carbs help bring sleep.

Funny to have friends in the wee hours....what else are u doing?

jenerino profile image
jenerino in reply to Purplecrow

Haven't tried it with vanilla. Sounds yummy. x

As others have said sleep problems are common. Whether because of the disease or the treatment!

Many are prescribed amitryptilene to take at night. It works well...and you don’t need use it every night if you prefer not to.

jenerino profile image
jenerino in reply to Mary63

Thanks Mary63. If all else fails I will ask my doc for some. x

Longtimer profile image
Longtimer in reply to jenerino

Yes, I know of a couple of people on lowest dose 10mg Amyltriptiline that has helped them.....good luck

Suet3942 profile image
Suet3942 in reply to Longtimer

I’ve been on it 4 years. Just 10mg, does help a lot.

Ever since starting the Pred. in 2012, I have had sleeping problems. The only thing that works for me is Amitriptyline- I guess a chemical problem may only be resolved by another chemical? I hate taking it but if I forget it one night then I am up most of the night. I haven't dared taking my dose any time other than in the morning in case it makes me more sleepless.

kay7954 profile image
kay7954 in reply to suzy1959

Yep, I take Elavil as well, that is what helps me to sleep and it does not have the side effects of sleeping pills. I wake up refreshed and it helps with depression that has seeped in during the last 6 months will on the prednisone.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Early days when on high doses of Pred, following GPs advice I took Nytol (otc) every 3rd or 4th night. Gave me a good night’s sleep on those occasions, but not too regularly for it to become addictive.

Went to sleep okay, but like you awoke around 2am. As I lowered Pred I found sleep returned to normal.

jenerino profile image
jenerino in reply to DorsetLady

Maybe I will try Nytol. After 3 years and numerous flares I am down to 3.5mg pred and had hoped it would stop the sleep pattern but it hasn't! Thanks for the advice. x

If this happens to me I take one Melatonine, and nod right off.

jenerino profile image
jenerino in reply to DianeA1

Thanks DianeA1. Looks like I've got plenty to choose from now x

Thaiboxing profile image
Thaiboxing in reply to DianeA1

Hi Diane My Doc gave me Melatonin 2ml which was useless I got a friend to get it from america 10ml that workis a treat Tried Amitriptylin was asleep for about 30min I now take Tamazipan which knocks me off but hope to get mor melatonin from america I usualy read most ofthe night but it make my eyes ache .Just feel I will never get back to normal sleep any advise outhere Thaiboxing

DianeA1 profile image
DianeA1 in reply to Thaiboxing

I hope you feel better!

It is a side effect of Prednisalone and improves as you taper down. I was prescribed 10 mgs of Amitriptylin to be taken 1 hour before bedtime. At my worst, this bought me at least 4 consecutive hours, sleep.

I have had the same problem,l never see the end of any TV programmes after 9 o’clock,l usually fall asleep ,but if l go to bed then l seem unable to get to sleep again.The same thing happens when l try to read anything during the day,l fall asleep .l have nor resorted to any sleeping pills yet,but lack of a good nights sleep does not help the brain fog ! I even fall asleep sometimes posting on this forum ,looking at the screen can send me to sleep.l cannot give you any good answers for a good nights sleep but l hope that things will get better eventually .

jenerino profile image
jenerino in reply to Grants148

thank youx

Hollyseden profile image
Hollyseden in reply to Grants148

I could almost have written that, sounds very like my day and night. 😊😴

York54 profile image
York54 in reply to Grants148

Sounds just like me too!!

I had similar problems for months, falling asleep on the sofa but unable to sleep in bed. I had numerous nights when I got up and watched old films on You Tube. My remedy is the same as some others have already suggested, a low dose of Nytol or in my case Boot's Sleepeaze which is the same thing but cheaper (I understand Tesco also do a version). The active ingredient is an antihistamine Diphenhydramine Hydrochloride. Last night I checked the time just before I fell asleep, (11.21) and woke up at 7.30, so had 8 hours of uninterrupted sleep. I'm currently on 10 mg pred per day.

jenerino profile image
jenerino in reply to Marijo1951

Oh thanks for that Mariho1951. I will give it a try tomorrow x

Marijo1951 profile image
Marijo1951 in reply to jenerino

I should have mentioned that there is also a herbal version of Nytol, but that did nothing for me. The herbal type is usually out on the open shelves, but the antihistamine version is usually behind the counter.

York54 profile image
York54 in reply to Marijo1951

I tried that too, did nothing. Perhaps the other one might, I'll try and give it a go. I was so lacking in sleep once, days turning to weeks the doctor gave me Zopiclone. As they can be addictive I used one every now and again, they worked a treat.

First let me say how much I sympathize with you. I too suffer from chronic insomnia and have done so even before I came down with PMR, so the PMR and everything attendant to it is a double whammy. I do take a generic form of Lunesta (eszopiclone) sleeping pills which gets me maybe three to four hours of straight sleep before I wake up. Most nights I can get back to sleep for another two to three hours at best, but not always. Many days I just go around in a mental fog. I have a question as to whether it is the pred or the PMR or both that is the source of the insomnia. Currently I'm taking 7.5mg of pred/day and wondering if increasing the pred to say 8mg might ameliorate the daytime fatigue I feel. I wish I had a definitive answer for you as well as myself but some of the other suggestions offered here seem reasonable to me and I may try some of them myself. My best wishes to you. I know where you are coming from on this issue.

jenerino profile image
jenerino in reply to Ozark

Thanks Ozark. Nice to know we are not alone.

Ozark profile image
Ozark in reply to jenerino

You are not alone. Sometimes it can feel that way because of the invisibility and relative rarity of this disease. A broken leg would garner more attention but with this you can "look" relatively good and still be in bad shape. Only those who also suffer can really understand. Again, my best to you and I hope some of the suggestions offered work for you and provide some relief.

In the early days, after diagnosis, my mind would race day and night, with worry, uncertainty, fear, and the overall shock that I had a chronic illness.

I tried splitting my doses, but never took pred at night. I’ve heard taking it at night can cause sleeplessness.

I had tried Zopiclone previously when I was going through a divorce, restructured out of a job and my dad died of cancer. Worked like a charm, but sometimes I woke up a bit groggy, and I was worried about dependence.

Then I developed PTSD through work and experienced terrible sleep disturbances like night terrors, hypervigilance about my safety, etc and even went to a sleep clinic.

I ended up using an indica dominant strain of marijuana containing THC via a disposable vape pen. Took a few draws before bedtime and it worked remarkably well. Even after a nightmare I could take a dose and fall back asleep. Note I did feel head high, but immediately calmed and sleepy. It also had an impact on physical pain I was experiencing (headaches, tight shoulders/jaw). This is not the CBD that others often post about.

In the end, each person must find their own treatment solutions. I am not a Dr., nor am I pushing anyone to try something they are not comfortable with. Always ensure you are mindful about medication interactions.

I hope you get some rest soon...living without a good night sleep effects your whole being.

jenerino profile image
jenerino in reply to PMRCanada

PMRCanada thank you so much for telling me about a bit of your life. I am open to all suggestions. x

PMRCanada profile image
PMRCanada in reply to jenerino

You are quite welcome. My posts are usually quite detailed and lengthy....brevity is not my strongpoint. 😀

Thank goodness for that xxx

Would love to try it but don’t smoke. Also am terrified of psychosis. Is it risky darling? Xxx

I didn’t smoke, rather vaped via a disposable vape pen with a pre measured amount of marijuana oil concentrate. Different flavours are available (raspberry twist, pineapple chunk), and the taste is quite pleasant (unlike marijuana smoke). The pens are labelled with name of strain, % of thc and CBD, and the end lights up as you draw air in the other. When it is out of product it flashes and you simply dispose of it. The pens are approximately the same size a regular pen. Each pen costs $25 and lasts about 20 days (with approximately 6 draws per day).

They were helpful for mood, lowered anxiety, some strains caused the giggles and can induce hunger, so beware. Other than also causing drowsiness and an ability to fall (and stay) asleep, and reduce pain, I did not experience any other side effects. Thc does cause a head high, unlike CBD products.

Some folks report paranoia, and marijuana consumption in any form can trigger or worsen pre-existing mental health conditions. Therefore seeking medical advice and supervision is important. Now that recreational cannabis is legal in Canada, I have seen local law enforcement warn potential consumers to proceed with caution. Things have evolved since the 70s when smoking a joint of Columbian was par for the course. Inexperienced people over consume and sometimes end up seeking medical attention because they are so high it is frightening for them more than medically serious.

Most recently I was introduced to “Meddy Bears”, a soft chewable marijuana based gummy bear for recreational and medical use. The developers work with Health Canada to develop this edible taking the processing beyond an oil product to a crystallized type of product that is much cleaner for consumption. Now I’ve seen everything!

Thanks for your enquiry and interest DC. I’m just trying to find my way through my physical and mental issues without reliance on too many pharmaceuticals that usually have side effects (pred excluded because I need it to treat my PMR).

I wish you best with your exploration and journey moving forward. As I say, everyone must make their own, informed choice about their health.

Hmmmmm, sorry for the length again....should have responded in a new post.

Darling thank you for the information and sharing. I wonder if you would consider cutting and pasting it into a new thread so others can see it? I don’t think any of it is legal yet in Australia unfortunately. We are always behind the world. Gummy bears!! That’s hysterical but worry about kids finding them! I know what my grandsons would do!

I am so over pharmaceuticals. I don’t want to be obsessive as I need some of them. But so many bad experiences and unnecessary trauma from bad reactions has made me passionate about self research. Thank you so much xxxxxxxx

PMRpro profile image
PMRproAmbassador in reply to Daisychain12

Anything that is effective as a medication is likely to also have some undesireable effects - don't think that only pharmaceuticals are bad.

Inability to sleep can be symotomatic of a lack of Magnesium which be a problem as we get older. Get a transdermal spray from a health shop. Also available from Good Health Naturally and Dr Sarah Myhill Websites. Both of these have quality supplements.

jenerino profile image
jenerino in reply to sennetta

thanks Sennetta. That's worth a try x

I have downloaded a free video called SleepHypno that usually works.

jenerino profile image
jenerino in reply to Berylholley

Thank you Berylholley. I have never tied that. Anything is worth a try now. x

I totally get it! I've learned an enormous amount about sleep and how to improve it in the last couple of years so I could go on a rant here!

I'm wondering if you could take a nap at 2pm, or whenever you do actually feel tired? If your lifestyle can allow any space at all for that I think that's the first thing to do...sleep when you feel sleepy!

If at all possible let your body tell you when it wants to sleep and go with it.

When you're awake in the night the best thing is to get up and go into another room, so your brain associates your bedroom with sleeping, not being awake doing other things or worrying about not sleeping! Make a cup of tea if you like and get comfy and read quietly or meditate or potter about gently and avoid screens, tv etc which stimulate the brain and train it to be awake in the night, which you don't want. A good book works best for me. Then wait until you feel sleepy and go back to bed, if you have time.

Even if you're not sleeping as long as you're resting that's good thing.

I could say a lot more but this is where I'd start...

jenerino profile image
jenerino in reply to xdbx

Thank you xdbx. Sounds like you've certainly been there and back. Will give it all a go. x

Like you nothing works

You've got many replies to choose from now! I was given amitriptyline 10mg for euphoria and slept for 5/6 hours - prior to that got no more than 2 hours, I used to clean all night long.......

jenerino profile image
jenerino in reply to Telian

Oh dear Telian - bet you had a super, dupa, clean house though. Thank you x

I'm currently on 13-14mgs pred, Split 2/3 in morning and 1/3 at teatime. Regular bedtime 10pm and listen to radio4 news. Brexit discussion always sends to me sleep within 10mins

jenerino profile image
jenerino in reply to paulus65

Ha ha, I know what you mean. x Thank you.

Hi,

I have 2-3 bad nights a week, usually waking suddenly at 3:30 a.m. feeling very hot. I think it is something to do with the Pred because I am down to 5mg. I am currently working long hours so can't nap in the day but I find I cope if I stay in bed and try and relax, middle of the night is the only time I have to read for pleasure so I make the best of it. If I am too tired to read I listen to the world service with earphones, via my phone. the shipping forecast usually sends me off.

jenerino profile image
jenerino in reply to Hellyowl

Ha ha love it. Perhaps a good night's sleep is down to the Shipping forecast! Thank you. x

Hellyowl profile image
Hellyowl in reply to jenerino

Its on Radio 4 at 1:00 am and 5:00 am I am addicted.

Marymon profile image
Marymon in reply to jenerino

You can get pods of Alan Bennett reading the shipping forecasts on the BBC radio catch up app.Not that he did of course, he just loved the flow of place names.

His inimitable voice is Magical.

I zonk out at night, but I wake up naturally between midnight and 2.00am when I take Pred down to 10.5mg, and drop off again. A month ago I was awake every two hours, so can sympathise with you all. Now

I can drop off in the middle of the morning or afternoon. I set the alarm during the day if I have to be somewhere.

What a roller coaster it is.

when my PMR was at its worst I had disrupted sleep all night. It felt as if I was asleep maybe 2 hours out of 8. Then when Pred removed the PMR pain I had instant improvement in sleep with maybe 5 good hours from 11 to 4 . I'm pretty much used to waking at 4 now . I listen to talk radio through an earpiece and just lie in bed until 7.

Have you tried meditation ? The new online course and app from Sam Harris is very good. when my mind is racing I find it a useful tool to help me shut down for the night :-)

jenerino profile image
jenerino in reply to diplodocus

Sounds like a good idea. When I just try and meditate, my mind just starts skipping around. Thank you x

diplodocus profile image
diplodocus in reply to jenerino

you have to try to think about nothing : just think about breathing and your next breath. I'm not very good at it but occasionally I do get that feeling of separation between unconscious mind and consciousness and that sends me straight to sleep !

Hellyowl profile image
Hellyowl in reply to jenerino

So does mine, I need serious distraction

I know it is stateing the obvious but I try to relax and when you cannot sleep it is very difficult. I have been on pred now for 8 months and I have learned to doze. So I suppose, like you, I might sleep for 4 or 5 hours, wake up, take my pred, return to bed and relax and content myself to doze until morning. I hope you don't think I am being cheeky or pretentious.

jenerino profile image
jenerino in reply to HamishPMR

Thanks Hamish. I don't think you are being cheeky or pretentious at all and am grateful for all advice.x

Hellyowl profile image
Hellyowl in reply to HamishPMR

Not at all, we all find our own way. About once a week I crash out for about 8 hours without waking. No rhyme or reason,

PMRpro profile image
PMRproAmbassador

Try having a rest about an hour before the onset of the fatigue - it isn't just the lack of sleep. Some of it is the illness itself and the pred does nothing to relieve that, it must be managed with pacing and resting:

healthunlocked.com/pmrgcauk......

It sounds counterintuitive, but often resting like that means you last longer into the evening and you are not over-tired when you get to bed. Also, the natural rhythm for sleeping is actually to sleep for a while, wake for a while, sleep again. If you have the time to indulge yourself, it may work to accept that you can't sleep just now and get up and do something else for a while - that also helps with associating your bed/bedroom with sleep and nothing else. It is also quite important to improve your "sleep hygiene" - and others have already mentioned that. Avoiding screens (TV, phones, computers) for an hour or more before bed helps many people.

jenerino profile image
jenerino in reply to PMRpro

Thanks a lot PMRpro. You are such a lovely caring bunch of people on here.x

xdbx profile image
xdbx in reply to PMRpro

Yes it's interesting that we've come to think 8hrs a night is the norm but it isn't our natural way. It's a learned behaviour that came along with industrialisation and the need for workers to clock on and off at set times. So let's unlearn it if it benefits us to do so! We may all be biologically better suited to a shorter sleep at night and another during the day...the good old siesta!

Hidden profile image
Hidden

When I found it difficult to sleep on high doses of prednisone I'd plug in to an audio book and that allowed me to rest through the night and often drift into asleep.

xdbx profile image
xdbx in reply to Hidden

I love a bedtime story...so what if it's the middle of the night!

Thank you for all your helpful replies,l seem to find sleeping difficult when l am laying down, l am going to try propping myself up a bit and reading or even watching the TV which is in my bedroom,what works downstairs may work upstairs ,but it really is essential to clear the mind,but my brain always seems overactive which l presume is caused by the Pred.Take care everyone and ‘sweet dreams ‘ if you can get them !

xdbx profile image
xdbx in reply to Grants148

You won't like this but tv in the bedroom is not a good idea because it stimulates the brain and actively trains it not to sleep there, so it's probably exacerbating the overactivity. We removed our bedroom tv earlier this year and both sleep much better for it. It took a little getting used to and I was a bit miffed to begin with but I'm used to it now and wouldn't want it back. We started by covering it with a throw for a couple of weeks until we felt ready to take it out of the room...

Thank you for your post.l never watch the TV in my bedroom ,my husband only used it to watch football ,l thought l might try watching it at night ,hoping it would send me to sleep as l always seem to fall asleep watching TV during the day and evening.lt is true that it can cause too much stimulation in the brain,especially programmes like Question time !

piglette profile image
piglette in reply to Grants148

I listen to the radio, mainly the BBC World Service.

That’s a good idea piglette ,thank you x

piglette profile image
piglette in reply to Grants148

The shipping forecast will send you to sleep!

Hi sorry to hear about your sleep troubles.

I use a product called 'calm'. Mix it in warm water and drink it down.

Also, I use the homeopathic 'calm forte'. Works really well for me. No side effects.

Good luck and happy sleeping.

gaqke10 profile image
gaqke10 in reply to Linny3

I second the use of magnesium for sleep. When I wake up in the middle of the night, I take

120 mg magnesium, 125 mg calcium and 200 mg phosphatidylserine, which is a fat your body makes from Omega-3 oil. It's good for the hippocampus (in the brain), which is 'injured ' during anxiety and stress. (See recent studies on PTSD.) It took a lot of experi-

mentation to come up with this. It usually puts me back to sleep for 1-3 more hours.

piglette profile image
piglette in reply to gaqke10

You need vit K and/or vit D to absorb calcium into the body. I don’t know if you are taking pred but with calcium you need to leave at least two hours in between taking the two.

gaqke10 profile image
gaqke10 in reply to piglette

So calcium will interfere with the absorption of prednisone?

piglette profile image
piglette in reply to gaqke10

Yes I think it stops the pred being absorbed properly. It also seems to have the same effect on folic acid. I was also told not to drink tea with my vit D and calcium supplement. I am not sure why.

gaqke10 profile image
gaqke10 in reply to piglette

Thanks. I found these two references to tea and osteoporosis on line. One is from

2003, but the more recent one from 2016 might be the better one.

"Recently, a possible relation between tea drinking and osteoporosis has also been suggested (4–9). ... However, regular tea (not decaffeinated or herbal tea) also contains caffeine that, in a high amount, may cause bone loss. The impact of drinking regular tea on the risk of osteoporosis has not been studied before."

Oct 15, 2003

"Studies show cola connection in women, but not men. Colas and coffee appear to have some effect on women's bone density and could lead to osteoporosis. But tea — even the kind with caffeine — and other sodas do not. And men are not affected at all by these beverages." Dec 7, 2016

This could be good news for habitual tea drinkers (Brits)!

piglette profile image
piglette in reply to gaqke10

That is quite fascinating, thanks.

PMRpro profile image
PMRproAmbassador in reply to gaqke10

No, it is the other way round: Prednisone decreases the absorption of calcium within the body. By separating when you take them there is less of an effect.

This is helpful about timing too:

Calcium carbonate requires stomach

acids, so should be consumed with

food at the end of the meal. Calcium

carbonate should not used if you are

taking antacid medications. Some

people have increase gas, bloating or

constipation with larger amounts.

 Calcium citrate can be taken between

meals. Calcium citrate contains half

the amount of elemental calcium as

calcium carbonate so the pills will be

larger to provide the same amount of

calcium

 Your body can only absorb 500-600

mg of Calcium at a time. If your

doctor wants you to take 1000 mg of

calcium per day, divide the dose and

take 500 mg twice daily for

maximum absorption.

I second the advice of those suggesting calcium supplements, or perhaps magnesium, although I'd get the latter in the form of a relaxing bath in a tub with Epsom salts. As a lifelong intermittent insomniac I was quite accepting of wakeful nights both with undiagnosed untreated PMR and with early days on pred - although I slept better with pred because I was not in pain. However, it was switching my morning calcium supplement to fairly near bedtime (after learning not to take pred and calcium together) which appears to have cured my insomnia. About three years on and I can count on the fingers of one hand the number of times I've had trouble falling asleep. Even with the stress of renovations and impending move and a brain which seems to be spinning like a squirrel in a cage, I still fall asleep. At bedtime I take a calcium supplement which includes magnesium and Vitamin D. I find calcium citrate in a capsule, not a hard tablet or caplet, easier to tolerate and always have a little snack, usually involving some plain full fat yoghurt. I think calcium supplements without food are hard on the stomach.

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