suggestions for sleep

[pwalker801]

Recently diagnosed with polymyalgia and giant cell, Having trouble sleeping, wake up the same time every night, used to wake up in pain but 60 mg prednisone seems to be helping that issue, so thinking sleep pattern is messed up. Any suggestions?

[DorsetLady PMRGCAuk volunteer]

Unfortunately a side effect of Pred, which hopefully should wear off as you reduce and as the body gets acclimatised to all that extra cortisol rushing around your body. Mine lasted about six weeks, some find it longer.

It just a matter of trying to manage it really in the meanwhile...try all the normal pre bedtime recommendations- routine, wind down with warm bath, relax, no screens etc..... Not really sure how effective they are, because I found going to sleep fine, it was just the waking up at 2.30 or thereabouts!

Some nights I’d just get up, have a cup of tea and read or do something (quietly), listen to radio - even get out in garden on sunny day! Summertime is not too bad!

GP recommended taking a sleeping tablet (OTC not prescribed) every 3rd or 4th night to get at least one full night’s sleep, but not every night otherwise you become reliant on them.

On the days following a sleepless night I might catch an hour or so early afternoon to get me through...but generally the high level of Pred was enough.

It will pass though.

[pwalker801 in reply to DorsetLady]

one of the issues is that I'm still working in an optometrist clinic as an office manager, ---and these sleepless nights I can't work the next day....... a conversation is coming with the optometrist, just not sure how its going to go, or even how I want it to go. Its reassuring that this will pass, but need to do something in the meantime, it seems patience isn't one of my virtues. I'm going to try the baths, tea, etc---thinking some sunshine would help and be able to get outdoors during the day.... winter just keeps hanging on. thanks so much for your response, what a blessing this site is.

[PMRpro Ambassador in reply to pwalker801]

I do think you MUST consider that GCA is a SERIOUS systemic illness. Yes, I know there isn't much to see, but an optometrist clinic must be more aware than any other employer just how serious it is. Maybe a short period of being off sick would make the difference?

[DorsetLady PMRGCAuk volunteer in reply to pwalker801]

As PMRpro says GCA is a serious illness, and most of us have retired before we get it......I feel very sorry for those still working.

Not sure how much time you’ve had off work, if any? But you need to get a balance, especially early days when you are still finding your way through the problems.

If there any way you could catch half an hour’s sleep at lunch time if the workplace has a spare room, realise it might not if it’s only a small premises. Or perhaps work part time for a month or so?

You need to get your boss on side, and if he values your work I’m sure he’ll do his best. Think the conversation needs to be sooner rather than later. Also talk to GP, but unless it’s really necessary you don’t want to resort to sleeping tablets........certainly not every night.

Good luck.

[Hidden]

Get creative! I used to wake up at about 2:00am EVERY night and be up till 5-6. At first I'd just surf the net... but that gave me anxiety and "information overload." I then got in touch with my "feelings" and started writing a blog... That seemed to help. I got all my angst and frustrations, about these stupid diseases, out "on paper" (so to speak) and it eventually allowed me to relax and go back to sleep... even if I wasn't able to go to sleep, I at least felt better; like I had accomplished something! ...and then I'd go to sleep at like 7-8 and get a few more hours. I was offered sleeping pills, but declined. Good luck. As DL says it shouldn't last too long. Up until a week ago I was sleeping 8-9 hours a night! : )

[pwalker801 in reply to Hidden]

Dear Mamici1, great idea, I use to journal a lot--am going to start a polymyalgia/GCA journal, will help to get some of these feelings out and there are a lot of them. My problem is that I'm still employed, so no sleep, no work the next day---will have to make some work decisions soon.....but don't want to. Thank you so much for responding, it really helps to have someone to bounce all this stuff off of.

[Hidden in reply to pwalker801]

Ahhhhhh, yes that is a bit of a problem. I'm sorry, I have no suggestions for getting back to sleep once you are awake... : (

[PMRpro Ambassador]

Your sleeping pattern IS messed up - but it probably won't improve much until you are able to manage with a much lower dose of pred. That is one of the unwanted effects of pred at high doses. Often learning relaxation techniques will allow you to at least lie back comfortably, in a recliner or in another room maybe if you would disturb a partner by being awake and wriggling, and pass the time in other ways. One lady on the forum has made great friends with BBC World Service radio in the wee small hours and finds she often drifts of again.

Using screens of any sort maybe convenient - but the light from them disturbs your sleep pattern even more. It is even recommended that if you have problems getting to sleep you shouldn't use your smartphone or watch TV in the hour or so before bedtime.

[pwalker801 in reply to PMRpro]

Dear PMRpro,

Thank you for responding, before this junk started i always went to sleep with the TV on, looks like i need to turn it off, will definitely try this. I'm still working so no sleep, means no work the next day---ugh! and although they have been really patient with me so far, I know I can't impose on that much longer. Thanks you for responding, I'm soaking up all the information I can get.

[Pongo13]

Lavender, eyes mask, ear plugs, mindfulness, a soothing white noise from an app called "windy", and amitryptiline 10mg (has been amazingly beneficial in helping bladder meds work better I.e.only up once these days). Book by the bed in case.... And no sugar, low carb diet means I never wake hungry anymore which I did initially on steroids. No blue light (although have emailed dr in middle of night... And when feeling desperate looked on our forum). Cool bedroom and change of clothes nearby in case of night sweat. I try to go without amitriptylin when hub is away and manage to sleep ok (ish) as it is usually his snoring that wakes me. I always go to bed and wake at same time. Not exactly rock and roll, is it?!

[PMRpro Ambassador in reply to Pongo13]

How strange - the wind here in Malta woke me last night!!!!

[pwalker801 in reply to Pongo13]

Dear Pongo13, Lavendar is a good idea, I'll diffuse some. I'm trying to soak up all the information I can get.....I'm still working, so no sleep means no work the next day, they have been so patient so far, but no I can't impose on that much longer, I'll need to make some work decisions. Boy you nailed it not exactly rock and roll--think thats what I'm going to name my journal.... I'll give you the credit, thanks

[Pongo13]

Forgot, no caffeine either!

[HeronNS]

I never had to take so much pred, but I've been a lifelong intermittent insomniac. It was in the middle of a sleepless night in my early days on pred that I discovered Patient forum, and later this one, and felt I had fallen among friends. Before that I had felt desperately isolated. Because of my familiarity with sleepless nights it was not a big deal for me. However since I started taking one dose of calcium supplement near bedtime (with a small snack usually involving milk and/or yoghurt) I hardly ever have trouble falling asleep, or falling back to sleep again if disturbed, Dare I say that I almost miss those wakeful hours, with a book or a crossword puzzle, in my comfy chair in the living room, far away from snoring hubby! Btw I seldom went online during those wakeful nights. The night I discovered Patient was when I googled if it was all right to raise pred dose if pain was returning after a taper. (Answer, yes!) Using an electronic screen near bedtime or during insomniac waking hours is not a good idea.

[pwalker801 in reply to HeronNS]

Dear HeronNS,

interesting about the calcium, do you know how that helps the sleep cycle. Sure would be an easy fix, and willing to try it. And I can see from everyones responses the electronic screen is going to have to be turned off earlier.

[HeronNS in reply to pwalker801]

I have to say I've never asked that question! I found it out by accident. I'd been taking calcium with pred at breakfast for about three months and then learned that one should not take these two things together. So I switched to taking a dose at bedtime instead and shortly found out that I wasn't having any trouble falling asleep. Some people have found a similar effect from taking magnesium at bedtime, but usually we don't take magnesium supplements for a long period of time.

So now I'm doing research:

medicalnewstoday.com/releas...

bedtimenetwork.com/your-bed...

I should add that the beneficial effect I've felt has lasted about two and a half years, so far.

[vnett]

I’m in the exact same cycle of going to sleep only to awaken at about the same time every night. I have a sound application on my iPad. The sound of gentle rain or lapping waves helps lull me back to sleep, usually! Hope you find something that works for you! The sleep deprivation adds to the stress you already have. Good luck!