Insomnia due to steroids

[GracieSimp]

Help - I don’t want to become addicted to sleeping tablets but for last six weeks since my GCA diagnosis and steroid medication, I have only slept 2/3 hours a night. I have to be able to function during the day but it is becoming increasingly difficult. Any tips from fellow sufferers?

[Hidden]

Hi ...oh dear it's not nice not being able to sleep. I sleep for 2 to 3 hours a night with the odd 6 hours thrown in. I know Dorsetlady took nytol or similar every 3rd or fourth night (had GCA too). There are food helpers that contain tryptophan. Warm milk, bananas, turkey meat. Obviously milk and bananas are high carb but if it's only for a couple of night a week to get that extended "normal" sleep time then it may help. The main thing is not to stress out or get anxious about it. That just makes sleep less likely. Is it getting to sleep or staying asleep that's the problem?

[Yellowbluebell in reply to Hidden]

You sound like me. The 6 hour sleep comes when I think my body just says "enough" and switches off!!

[Hidden in reply to Yellowbluebell]

Yes and I take sleeping pills!! I did get good sleep with them but went on duloxetine for neuropathy a couple of months ago and it's brought out the insomniac in me again. Of course it says cause sleepiness or insomnia on pil. And I had to give up amitriptyline that I have used for 15yrs so my back is worse spasming. Like you say not stressing is the important thing. Fortunately I can't work and have no dependents other than my cocker spaniel and she likes me pottering in the night...most nights. Not getting stressed is easier when you don't really have many commitments. It was very stressful when I worked. I had to drive 100miles each way for work so days were 12 to 16hrs. I was a danger driving really. I can't remember how many times I had to pull over and nap for 20mins just to get home. Hence, I feel for anyone who has responsibilities like work and family on no sleep.🌻

[Yellowbluebell in reply to Hidden]

Totally agree! I was lucky enough to have given up work a few years ago to look after OH after he broke his back in the fire brigade so idudnt have to go to work daily or I too would have been a danger on the roads!

My cat has also welcomed my pottering and she has now added an extra meal time into her schedule. If by any chance i am actually asleep when extra meal time is she comes to wake me or worse still our grandson!!

Just accepting this is only temporary for most people is probably the best advice anyone can give.x

[Yellowbluebell]

Hi, I was only sleeping for a max of 2 hours a night since my diagnosis in Oct 18. It is hard but getting stressed will make it woese. Your gp might be willing to prescribe something like amitriptyline which quite a few members use to help sleep. It's usually a small dose and works until you are on jess pred when hopefully your sleep will improve naturally. As I already took amitriptyline my doctor prescribed sleeping tablets but only for using occasionally. Over the counter medicines like phenergan are really useful and I use this as an alternative to the sleeping tablets. Other members of the site use this or an antihistamine. Please just check with a pharmacist that these medicines will not clash with any other medication you take.

The biggest thing is to just accept your sleep at night will be disturbed but to not stress about it and take naps during the day if you need to. I often sew at night and can even be found ironing on rare occasions. I catch up on TV that OH doesn't want to watch in peace and quiet.

The other things to try are warm milk and chamomile teas as these are both quite calming.

I hope this helps and keep us up to date with how you are getting on and remember this will improve as your dose of pred reduces. Good luck. Yellowbluebellx

[Marijo1951]

My advice, based on about 10 months of experience, is to go with the flow and find things to do during the night. However I understand that it's easier to do this if one is retired. If you're still working, obviously you can't make up for lack of sleep during the day. I watched old films (mainly British) on You Tube and did mountains of knitting for charity, varying the routine by occasionally working on a jigsaw puzzle. Once my dose went down to about 15 mg per day, the nights of insomnia reduced greatly. I'm on 9 mg now and last night was my first night of insomnia for several weeks. I got up and watched 'The Killers' with Burt Lancaster and Ava Gardner (not a British film on this occasion), then went back to bed and slept for about 4 hours. I occasionally take a sleeping tablet, one 25 mg tablet of Boot's Sleepease, which is half the recommended dose. This is a cheaper version of Nytol (the anti-histamine type, not the herbal type).

[Yellowbluebell in reply to Marijo1951]

Its amazing what gets done during our hours of insomnia. I quilt and often do all my quilt ironing in the early hours. I try not to do housework though as I didn't like doing it before pmr so dobt see why I should change!!

[Marijo1951 in reply to Yellowbluebell]

I'm definitely with you about the housework ban!

[GracieSimp in reply to Marijo1951]

Thanks - May try occasionally

[DorsetLady PMRGCAuk volunteer]

As mentioned, I did take Nytol on certain nights - GPs suggestion. Did help, but fortunately found that after a couple of month sleep patterns returned to normal.

As others have suggested, you just have to accept this is what it’s like at the moment, no point in stressing about it. Just occupy your mind with something else you enjoy- and catch up during the day with catnaps. Hopefully, like mine, it won’t go on forever!

[PMRpro Ambassador]

Some people find taking calcium or magnesium before bed helps sleep. Having a routine and making sure you have paid attention to "sleep hygiene" measures: no screentime before bed, no lights, especially blue, in the room, not using the room for purposes other than sleeping and so on all may help as well.

It was once seen as normal to go to bed for a first sleep, wake and do things including eating for a while, and then go back to sleep. It is actually what the body clock dictated - and the habit of an undisturbed 7 hours is a modern concept.

[suzy1959]

I have battled with sleep problems ever since starting the steroids 6 years ago. Eventually I started on Amitriptyline 35mgs as nothing else worked. I was still generally getting up twice in the night but accepted that was my new normal. It was much harder when I was working and was partly why I decided I had to retire. Unfortunately ever since my knee replacement 5 weeks ago, my sleep has got even worse(up every 2 hours at least) and I am still tying to sort it out. I have realised I have had a post-op flare and flares often disrupt my sleep too.

[PMRCanada in reply to suzy1959]

Oh no. So sorry to hear of your post op flare. I’m scheduled for a total knee replacement as well and fear the same thing happening (fingers crossed).

Sure hope you can get the flare under control and some additional rest too.

[PMRCanada]

I struggled with sleep disturbances and difficulty sleeping due to work related PTSD, for a couple years before PMR came on board. I tried Zopiclone (a prescription sedative-hypnotic) which worked very well but had the risk of dependency, so after the prescription was finished I stopped taking them.

Instead I investigated and began using an indica-dominant cannabis via a vape pen. A few draws per night before bedtime did the trick, no side effects, and I did not wake up drowsy (as I had to be functional for work). At times, if I did have a night terror, I could vape and get back to sleep.

When I was on higher doses of pred in the beginning, I experienced both insomnia, and my mind was racing with worry about having PMR, being on pred, along with mood swings. Once again the vaped cannabis and it helped lift my mood and with getting, and staying, asleep.

I’m in Canada here, so I appreciate others may not have access to legal, medical marijuana, or they are not comfortable consuming this product. To each their own.

I do hope you get some solid rest soon as I know how sleep deprivation can impact one’s life.

[Hidden in reply to PMRCanada]

That would be a lovely way to drift off- no chance in uk. Been on zopiclone for years but am fine with that. Though recently not working as well as I haven't had my bimonthly detox and a new drug causes insomnia so I might drop that occasionally. Tried all the uk OTC ones. The ones that made me sleep the best was sominex but they had a hangover. Own brands work as well as nytol and are much cheaper. There are times I wish I need sleeping therapy. Would love to sleep for a week with people giving me massaged for my sore muscles, removing all my unwanted pred facial hair and of course it would be an automatic food fast. If someone offered me that I would be there in a second. I am so tired. 😂😴😴😴😴😴

[katiemills in reply to Hidden]

It is possible to get indica cannabinol in the U.K. . I used to use zopiclone when I was on 30 mg pred . Now I'm on 16 mg I use indica cannabinol and nytol at night . Also satvia cannabinol during the day to combat fatigue and pain.

[Hidden in reply to katiemills]

Thanks. Believe me I have tried most things in search of sleep.🌻

[Soraya_PMR]

I wouldn’t want to get stuck on sleeping tablets either. Not sure I would ever take them, but then I’ve only been on PMR doses of pred, and 20mg was bad enough. You have my sympathy. But I don’t believe medicated sleep is naturally restorative.

If you’re drinking caffeine, cut it down/out. I did this pre pred and it was genuinely helpful. Plus my structured bed time and getting up time has improved things. I nap during the day as needed, but don’t allow myself after 4pm.

I’m rubbish without sleep, now add in PMR and I’m double rubbish. I hope things ease for you soon. One thing, you can always find someone online to cheer you during the long nights.

[GracieSimp in reply to Soraya_PMR]

True - someone worse off.

[Telian]

I was prescribed Amitriptyline 10mg an hour before bedtime. Worked a treat for me and was able to stop it when got to 4mg pred without problem. What dose of pred are you on?

[GracieSimp in reply to Telian]

30 - just gone down from 40

[Telian in reply to GracieSimp]

Have a word with your Rheumie of GP as if left it can get worse - I was near euphoria, according to my Rheumie, I only slept for two hours even though I was exhausted - used to clean all night long especially the bathrooms....

[GracieSimp]

I’m the same 2/2.5 hrs only. What did your doc /rheumie suggest. My doc just said it would get better as steroids were reduced - however long that takes! She said to avoid taking many sleeping tablets but nytol was ok occasionally. Rheumi at my first appointment post diagnosis and after only 2 weeks on steroids, just said to take sleeping pills! Slightly conflicting advice.

[katiemills]

Hi Gracie I needed zopiclone when I was on 30 mg pred . I couldn't cope with the lack of sleep . I knew I couldn't stay on them long term so explored the cannabinol/ nytol route which is working for me now I'm at 16 mg . Sometimes I need a few more drops in the night but that's OK - I drift off to sleep again . It's perfectly legal and safe . PM me if you want.