Sleepless nights

[christine2715]

I am on 60 mg Pred having been diagnosed two weeks ago.  I am utterly exhausted with the lack of sleep.  I only seem to be sleeping 3-4 hours a night and that in such turmoil with night sweats etc.  I wake at 12.30, 2.30, 3.30 and am unable to get back to sleep after 5. Its odd how regular the timings are.  I cannot get back to sleep for ages between each waking. Was in tears this morning I felt so miserable. Am going to a herbalist to get a sleeping draught today. So hope it works.  I try to sleep for an hour in the afternoon but family comings and goings tend to wake me - I am a very light sleeper at the best of times.   I guess it will get better when they cut the steroids down but that is not for 4 weeks.

[CloudGazer6]

Hi Christine

Don't worry - it's perfectly 'normal' for that dose of prednisolone, even if it's miserable. If it helps it's partly because the function of the prednisolone involves acting on various metabolic processes, one of which includes our natural sleep patterns. At that dose I was sleeping one hour when I fell asleep and then nothing for several hours and then a couple of hours at about 6am. 

I found it much easier to decide that this was my new sleep pattern for the time I was on that dosage, and it got easier a fortnight ago when I went down to 40mg. I just adapted what I did to when the steroids were letting me sleep. I am also usually a light sleeper but this way I have been catching up on emails and DVDs and radio podcasts in the night rather than lying worrying that I should be asleep because everyone else is. That made me much less anxious and frustrated. I also found it reassuring to understand that the steroids made me jerk awake suddenly in a rather alarming way, and that the quality of my sleep was very different to when I wasn't on prednisolone. That made it all feel less alarming. 

Telling other people in the household about what you're experiencing can really help. Then you don't have to worry about disturbing them and they can help you out by being quiet. I found it very useful to tell people that I needed to have a different routine for a while and it's been much less stressful and exhausting just giving myself over to a floaty, slightly dazed way of being for a few weeks. 

Good luck - hope that helps and that you can find a silver lining in the extra time you're being given in the middle of the night. I've never been so glad of a Netflix subscription... 

[DorsetLady PMRGCAuk volunteer]

Hi Christine,

Well remember those times! Unfortunately not a lot you can do, but, as you say it will get better when the Pred reduces. My sleeplessness lasted for about 4 or 5 weeks. I used to wake about 2.30 then toss and turn until about 5am, sometimes I drop off then, sometimes I'd get up. It was about this time of year, so quite nice to be up in the sunny mornings. 

What I did was to take one Nytol tablet about every 3rd or 4th night, not regularly enough to get used reliant on them, but enough to ensure a good night's sleep every so often. Then at least you don't feel quite so much like a zombie! 

I appreciate it might be difficult to sleep during the day, but anything is better than nothing. 

If you can, don't get stressed about it (not easy) but that just makes it worse. Just accept that you are going to wake up. I used to count backwards from 100 down to 1, sometimes I would have to do it twice, but usually it worked! My late husband, who very often had nightmares waking him, used to go round the village he lived in as a child house by house recalling the people who lived there. Anything, just to take your mind off sleep! 

Wear loose cotton nightwear or just t-shirt and pants, open window or use a fan. My late husband was like a hot water bottle, and I must admit some nights I felt like kicking him out of bed! But it was easier just to get out myself, walk around, cool off, and get back in. 

It will soon pass, but good luck in the meanwhile. 

[suzy1959]

I have struggled with sleeplessness ever since starting on 15mgs Pred.( now down to 9) The only thing that has helped me has been Amitriptyline even though I hate being on even more drugs! Hopefully you won't suffer as much but if you do, this drug is worth trying- it also seems to lessen my pain somewhat and the Rheumy told me that it does work on the pain for some of us. 

[DorsetLady PMRGCAuk volunteer]

Hi Christine,

Forgot to say in earlier post - if you have a short term project that you've been promising yourself, and can be done at 2.30 am - then do it now, whilst you have this Pred-induction hyper activity! For that what it is, it's a huge burst of adrenal-like medication.  Similar to children having a sugar rush, and if you're a mum, sure you know what that's like! 

This hyper feeling will pass as soon as your body gets used to the Pred, as I say about 4-5 weeks hopefully. Then, if like me, it subsides. 

Unfortunately, because the Pred takes over from your own adrenal glands it's at a constant level and is there in the background, so when you need a burst of adrenal there's no more to call on. I have said in previous posts that it like driving a car - fine along a straight, flat road, but when you need a bit of extra power to go up a hill, you press the accelerator - but there's nothing there. 

Although Pred is the only drug for GCA, PMR, and we have to take it, it certainly throws the rest of your body out of kilter especially for those us with GCA who have to take larger doses. 

But you have to tell yourself, it is protecting your sight in particular, but also other major arterial problems. So hang on in there, things won't be easy, but they do get better. 

Take care.

[piglette]

I listen to the BBC World Service overnight now and have discovered all sorts of fascinating information. I was able to listen to the election results until six am thanks to pred! It is so frustrating not getting to sleep, as before pred I was asleep virtually as soon as my head touched the pillow. The hot sweats are pretty ghastly too but they do get better. I hope the sleeping draught works.

[PMRpro Ambassador]

Hold on to the fact that this is potentially saving your sight - that is the main reason for the very high dose to start with. You will need to learn to relax and rest even if you don't actually sleep for the moment - and hour isn't enough.

You have to remember you have a serious illness - does that make it more reasonable that you can't function as normal? The family has to take this into account. And at present - you come first, and second, and third...

[zelma1915]

I have exactly the same problem. My nights are my worst nightmares. So very tired and exhausted. I am able to get some rest in the daytime as only me and hubby here. Let's just keep going with the hope this too will change. Bless you!

[PenelopeVita-Finzi]

I sympathise very strongly.  I have had GCA since August 2014 when I was on 40mg pred.  I had such severe sleep deprivation - only a couple of hours a night - that the registrar said that I had "steroid-induced psychosis".  I kept falling asleep during the day wherever I was and nights were torture.  I found that if I stayed in bed listening (through headphones) to the radio I at least felt less exhausted.  My GP was very helpful and prescribed sleeping pills for occasional use when I really must sleep. They did help but I didn't feel great when I took one (actually only half) so I was never tempted to use them more than occasionally. Since reducing over the past nearly two years to 5mg, I am sleeping more but rarely more than about 41/2 hours a night and never for long stretches.  I recently went to the Sleep School for a day hoping to learn some strategies to induce sleep.  The usual tips, such as having a hot bath at bedtime, not looking at TV or computer screens in the evening and concentrating on breathing have helped a little but I don't seem to have learned 'mindfulness'.  I am certainly more relaxed even if awake which helps with the tiredness in the day.  If anyone is interested, The Sleep Book: How to Sleep Well Every Night by Dr Guy Meadows, who ran the seminar I attended, might help.  But I have a feeling that at my age, 77, things won't ever get much better.

Good luck!

[Zhenya]

I too have sleepless nights on Pred and have become an avid night reader. Rather than tossing and turning, I simply switch on the light and tuck into a really good book for an hour or so until my eyes are closing and I switch off the light again. It has become a kind of ritual and I must say I have read some jolly good books and profited from my sleeplessness. Right now I am on the third volume of the Neapolitan novels by Elena Ferrante, after which I have promised myself The Alexandria Quartet ...inspired by watching The Durrells on TV.

[jinasc]

Have just read 'Living with PMR & GCA' , a new booklet by North East Support. It really is superb – a book for patients written by patients who know what sufferers are going through and need to know. Cannot praise it highly enough. Wish I’d had it when I was first diagnosed with GCA five years ago.

Eric Clark

 Award-winning Author and Journalist.

ericclark.net

There is also a DVD called 'You Are Not Alone' made by Medics and Patients, which you can show to friends and families, so they understand whilst you may look well you have a fairly rare auto-immune illness.

pmr-gca-northeast.org.uk.

[lesley2015]

Hi - I also used to really struggle with this - especially as I was still working. I would do my emails at night and other bits but after a few nights was really washed out. The doctor gave me Hydroxyzine (Vistaril, Atarax), its an anti-histamine for itchy skin. It did work, although left me groggy the next day and if I used it too often it seem to make be a little 'down'. However, when I really wanted a nights sleep it did help ... just a thought.

Best wishes

[PMRpixie]

Hello Christine

One of the things that frustrates me the most is the freely given advice people offer. I do understand that people mean well, but don't understand that most of us have well researched our disease.  I frequently hear "make sure don't nap during the day".  (Yes, I know that!!!)  But when  you reach the point of exhaustion you grab what sleep you can.  I finally have tried to stop explaining my situation and sleep whenever I can - guilt free.  A nap is a lifesaver and feels so good 😉

[slaycrab]

I was sleep deprived like you when I began with prednosodine. A Health food shop offered Bach Rescue Night Spray. It has helped me to sleep for 2 months now. I hope it works for you.

Slaycrab

[christine2715 in reply to slaycrab]

Am taking a strong herbal mix from my herbalist which gives me the first two hours sleep but after that the pills are just too strong and wake me every couple of hours til about 3.30 when I cant sleep any more but I am getting used to it and quite enjoy getting up and getting things done. Problem is that I tend to wake up my Son and husband too. I am on 60mg Pred.