Saw doc 14th Nov re insomnia. He reluctantly prescribed Zoplicone as an emergency measure as he told me they were addictive. He recommended an online course, Sleepstation, which had an NHS link. This was not apparently available in my area so I was offered a reduced rate of £160 to do the course. Desperate - I paid. There are many resources on the site. The PDF on the sympathetic / parasympathetic systems was interesting but most of the stuff on sleep hygiene I’d been following for months. I completed 7 days of sleep diaries and was sent a report which told me less about my sleep than the smart watch data I have. The questionnaire sections on stress, anxiety and depression showed scores that ‘you may wish to discuss with your doctor’ - bit of back covering there I think. In fact communication with the online sleep counsellor suggested that steroid induced insomnia was not something that they could help with. This was contradicted by other messages. There were short videos to watch, again on sleep hygiene when finally the first plan was revealed. It’s recommended I go to bed at 12.00 and get up at 5.30 am. I must not stay in bed. Some days I can’t get out of bed for a while and getting up at 5.30 am during November! I have queried how this fits in with the need for rest with GCA. The last two nights I have taken 3.75 mg Zoplicone and after the second night my sleep has improved, although I still had the woke up around 3.30 am. as usual. I don’t particularly want to take a lot of medication but I’m quite confused as to the best way forward. I am actually doing well on 17.5 mg of steroids, no aches, headaches etc it’s this insomnia that is getting me down. Interested if any of you have tried such a sleep programme with GCA and in the level of steroids I am currently taking.
Insomnia update - anyone used Sleepstation? - PMRGCAuk
Insomnia update - anyone used Sleepstation?
We have communicated a bit before about insomnia, so you have my total sympathy!!
Rather than using an app, I am having one to one treatment via a sleep clinic. It is expensive but tailored to my individual needs. You are right to be cautious about the sleep deprivation technique which is very hard to implement. I had to stay up until 2 and then get up at 7. I am now, after 5 weeks, going to bed at 12:45 and up at 6:30. This did indeed put me into a massive PMR flare so I went up from 11 mgs to 22.5 mgs. Currently at 20 and not able to reduce further yet. The worst thing at the moment is being so sleepy in the early evening as I am not allowed to nap/doze.
The good news is that my sleep has improved enormously, and without drugs.Even though I had to increase the steroids, and therefore had a little blip, I was assured that this method would still work and after a few days, my sleep was better again. I am now reintroducing the CPAP machine for my sleep apnoea and did not have a terrible night's sleep!
I am not as tearful as I was, feel a bit more human and a bit more capable of thinking,.No more nausea either!Eventually, in the next couple of weeks, I will be allowed longer in bed and therefore get a few more hours' sleep- bliss!
I think I'd write to the GP and ask if he intends reimbursing you! (He won't of course, but it might get his attention). Some doctors are ridiculously fearful of using medication for insomnia - but sleep deprivation is a serious problem. I do see the point for people whose life-style is leading to their insomnia but for us it is a different scenario.
Ha ha, I intend discussing it with the GP. If this online programme is unsuitable for GCA/PMR patients then he needs to know not to recommend it. It doesn’t feel personalised, despite claims to the contrary. It’ll be interesting to see how the sleep coaches respond to my queries. I’ve already asked for a refund if they can’t help. I’m coping well on my current steroid dose and the taper is being slowed down. Rheumie has responded instantly by email. It’s the insomnia that is gruelling. I bought a pill splitter today today in case I need to half the Zoplicone. I’m only on 3.75 but it might be useful. Steady as I go…
I bite my 3.75 in half in the middle of the night provided it’s not gone past 4.30am !
Half a pill is just as effective for me.
I don’t find Zopiclone addictive at all. Generally speaking I do this maybe once a week.
I was probably addicted to Zopiclone, as I took it every night for 2 years, 7.5mg at one time, but it wasn't a problem because I reduced the dose in tandem with the pred. I used a tablet splitter and was able to reduce by an eighth of a tablet at a time. I got off it completely a couple of months ago at about 2.5mg pred. And when I needed it, it was wonderful: it's very difficult for your health to improve on 2-4 hours sleep a night. So don't be too afraid of Zopiclone, just aware that you need either to use it occasionally, or wean yourself off kindly. 🙂😴
I would definitely ask for my money back and say that it was not applicable for you. You could quote the Consumer Rights Act 2015 which might rattle their chains a bit!
Thanks all for your replies. I am in communication with an online sleep counsellor and told him the sleep schedule suggested is a risk to my health. Catch 22 -the steroids are keeping inflammation at bay and the condition in check but my body needs sleep to heal that steroids are preventing, so that is difficult. I do not want to risk putting my body under additional stress to set off a flare. He is talking to their in-house doctor and suggesting an amended schedule. I told him I’d be interested in his report but as he said they can’t get involved with my medical situation I think I’ll be asking for my money back. I told him if they can’t help people in my position then I’ll be informing my doctor to save other people time and money. The Consumer Rights Act is a good call if necessary. Will see how the next couple of days go then go back to the GP if need be.
I have a sympathetic GP and have taken Zopiclone 5mg on and off for years for back pain and insomnia. I also use the Calm app. I am not addicted, I have been off it for months at a time, but it is a wonderful back-up. Steroid induced insomnia is horrible.
I’ve heard of steroid induced insomnia before, but until now have not asked what it is that’s causing it. Do you know?
I’m on low dose Pred (2mg) and my sleep has deteriorated, part of which is caused by the need to visit the toilet during the night, typically around 3 or 4am (an enlarged prostate pressing on the urethra resulting in the bladder not emptying). Of late I’m quartering a Zopiclone 7.5mg tablet and that helps, but I’m worried about becoming dependent on the sleep med. Nurse practitioner freely prescribed the last box of 28 in August and when I explained to one of the GPs at the new practice in our new location, he indicated he would continue to prescribe based on telling him I split into quarters.
Cortisol is part of the body's preparation in waking up for the day. It is at its peak about an hour after waking up and at its lowest about midnight, levels are part of what is called your circadian rhythm. When you take pred there is a much higher level present in the body than is natural - so your body thinks it is always waking up as the pred stimulates the receptors that prepare the "fight or flight" response.
This is quite good:
bedroomstylereviews.com/doe...
Most of what is in it you should know by now but it is instructive to read it all in one place and there are some good tips.
Very interesting, clear explanation of how prednisolone keeps you awake. I had fair sleep two nights ago on 3.75 mg Zoplicone and yesterday felt so much better. Last night I split the dose and woke up at 2.45 am, coughing (maybe a hangover from the virus I had). Awake for three hours and a wipe out today. Tonight I’ll take it at the steroid alarm time as Bridge31 suggests. Had no response from the sleep counsellor yet but may send him the link you sent me. Will arrange a GP appointment for tomorrow (hopefully) to discuss and request another prescription for Zoplicone. Thanks a lot to you and everyone for your contributions to my situation. I have been feeling very low.
Splitting Zopiclone doesn't work, as it hangs around for approx 8 hours, and if you don't have that much rest afterwards, you are likely to feel lousy for some hours.
MrsNails - is there room for this link in FAQs. Seems to meet with approval!
Have sent the link to Sleepstation and asked for clarification as to whether certain patients should be excluded from their programme if they can’t be helped, especially as they have the NHS logo on their site. The marketing on the website claims high success rates. Also said I would be discussing with my GP tomorrow.
Especially since GPs are recommending it willy nilly! And they don't have to pay ...
It is available on the NHS in some regions but finding changed apparently in some areas, clearly mine as when I clicked on my health practice it said it was not available but I could have a big discount. I was at that desperate stage where you’d do anything! I do need to inform my practice though as I don’t think what they’re offering can help people with steroid induced insomnia when rest is needed. The sleep schedule I was sent seemed risky (and impossible!) to my health, I will not to anything intentionally to risk a flare up
They are also defrauding the NHS because I bet they bill them for signups in the "on the NHS" places. And did the funding change because it was turning out to be ineffective????
Have no idea. Think local funding has changed across different areas. Their approach seems to be CBT focused but that doesn’t fit with medically induced insomnia. The article link you sent made complete sense as that is how I feel sometimes - awake with no way of forcing my body to shut down despite how much I meditate, spray my pillow, listen to soothing sounds….
I call it washing-machine brain ....
What irritates me is the insistence there has been that screens use is bad. There is increasing evidence it isn't half as bad as they claim. The worst nights I have are usually where I DIDN'T read on the Kindle and apart from that, my routine is the same but some nights I crash out, others I just lie there. I haven't got time to faff about having a bath (I'd never get out anyway) or whatever. And I detest artificial scents in the house.. I do use (very) expensive perfume when I do use any in the daytime but that isn't going to send me to sleep! More likey to keep me awake contemplating the bill!
washing machine brain - I’ve used those exact words!
I do love the oils and bath bubbles and have always loved the same expensive perfume, Chanel No 19. My husband found the expensive sleeping candle I was given a bit much. He said he was almost falling asleep walking into the bedroom!
I have had PMR for 3 years now and only just got down to 10mg Prednisone by adding an extra drug. I live in Spain and they seem to do things different here. I have been taking Lorazepam for 18 months now even though its only recommended for 7 days as addictive. Its an antianxiety sleep med as I find the steroids keep my mind buzzing so I cant relax. It doesnt help that I have always been a bad sleeper with an 'active' head. I only take 0.5mg of Lorazepam each night and it gets me off to sleep. I couldnt survive without it as I still work full time but self employed so no sick pay if unable to work. The Consultant doesn't see 0.5mg as a problem compared to not getting enough rest/sleep for the disease. We will see what happens when I eventually come off it but I have not needed to increase the amount I take in all that time.
Can I just reiterate that my experience so far is that the CBT sleep training DOES work even with medically induced insomnia- my sleep is already much improved and still improving. The risk is in getting a flare which I did bu tI would rather rather that than carrying on not being able to sleep at all.
My consultant has told me that they use it for people with all sorts of causes of insomnia including chemo and other medication.
That’s interesting Suzy. I just can’t face the sleep schedule I was given. I have become increasingly weaker as insomnia has built up, probably not helped with a nasty virus I had. I really do not want to risk a flare as I’m doing well now on 17.5 mg and a slower taper after a couple of blips. I guess we all have to follow our bodies and do what we feel is right for us. I was disappointed with the mixed messaging I’ve had from the sleep consultant as to whether their programme can help. What I don’t get is that we need rest and sleep to heal the body but the steroids counteract the sleep for some of us. It’s a vicious circle. I don’t think I could physically follow the sleep schedule. It would certainly add to my stress and my already low mood. I’m pleased things are working out well for you. What I’ve learnt so far with GCA is that it’s a very individual response.
I agree- it is an individual decision.
I felt so rotten that I was prepared to do anything to feel better. And I do now feel better! I also agree that the lack of clarity from the app. has not helped at all.
I needed regular access to my consultant and her constant reassurance of the evidence that this works to enable me to see this through. She has now discharged me to carry on on my own, telling me that I am no longer an insomniac. Now I just have to get the sleep apnoea under control....
I too respond better to a 1:1 approach. I’ve had mixed messages and no faith so far. I hope as I reduce steroids the sleep improves. It may, it may not, but I feel very wiped out today. Pleased you’re sorted. Sleep apnea is very debilitating. I have a friend who was treated for that and looks a completely different person just three months later after years of sleep disruption.
I wouldn't worry too much about getting addicted to Zopiclone if you only take half a pill a couple of nights a week just to get some healing sleep. You feel much better afterwards. I have some in my bedside table just in case and have no trouble doing without most of the time. Maybe just the fact that I know it's there is reassuring!
I had awful insomnia on 20mg of pred. If I did drop off, I would wake 5 minutes later, sobbing because it felt like someone had died, but I didn't know who. That was terrible. Or I would lie awake singing silly songs in my head like, 'There ain't nobody here but us chickens', and going faster and faster like I was a maniac. My Mum laughed her head off when I told her what song it was going round and around in my head, but it was awful 🙈 The complete lack of sleep has a terrible toll. Things improved as my pred dose lowered, and I take Amitriptyline now, which has been fantastic, and I don't have any side affects from it, which is unusual because I seem to suffer all the side affects from every other meds I'm given! They don't send me to sleep, and I still sometimes lie awake for a couple hours, but I do always fall asleep eventually, and once I do, I'm fast asleep till morning 👍
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