The title of my post has to be sung, rather than spoken with a Caribbean vocal lilt.
, After 13 nights of little or no sleep, I was feeling fatigued, not a bit tired, just weary. Excellent help from members here and of course charming and caring wife. Mindfulness and other relaxation methods did help make the night peaceful and contributed to the quality of my short naps, as did did an over the counter preparation. Lavender on the pillow and in a tablet calmed me too. All helped, but no sleep.
I am very averse to taking even more drugs, but decided to send an email to my GP and suggested that she might wish to consider giving me a short respite in the slumber department. As the drugs are quite addictive, I suggested 2 doses per week, dispensed on a weekly basis: why did I do this? I am such a rare visitor to my practice, no-one knows me as a person other than I worked in primary care and still have some involvement locally advising GP practice. She called, we had a chat and she was not surprised I was not sleeping and agreed that whilst the steroids are tackling my symptoms, the side effects are causing me discomfort. 14 Zopiclone dispensed was the outcome.
Last night I took half of the prescribed dose and slept for 7 hours, only interspersed to address water retention issues! I am a different person as I type, the sleep has addressed some of the low level pain I have also been suffering too - probably a headache caused by little sleep, more importantly, I feel refreshed and at ease. Probably a quarter dose tonight and then a night without - an experiment to see how low a dose I can take to get relief, or even just to kick start a cycle of habit. All else fails, then half or lower a tablet daily would help whilst I remain on 90mg
I can only say that I have been able to cope sleep deprived for two weeks and could cope much longer, but last night’s sleep was such a tonic that it was worth it and will benefit me in terms of wellbeing. Combine that with the fact my wife was not disturbed (she has to suffer this disease equally, just in a different way) or worse forced into another room, encourages me to recommend to new acute sufferers to make the suggestion to their clinician to at least consider a very short term dose of something to relax you and combat the side effects.
Another long post from me, but this this is a disease where patients often suffer and after the relief afforded by the steroids being appreciated and accepted, the side effects are tolerated as worth the relief. I did and still do, however, last night was as beneficial to me as having a short holiday!!!!!!
I must admit after sleeping for the first time in two weeks longer than minutes post commencing treatment, combined with a torrid 10 days prior to starting treatment, if they had offered to me in broken glass format, I would have taken it.😁😁😁😁
My GP absolutely refuses to prescribe Zopiclone even though in the past I've begged as I was desperate for sleep. Yet I have other friends who have been on it for years and they are so healthy, presumably because they get a good night's sleep. it's so unfair as it's the Pred that causes the problem in the first place. I'm so tempted to buy them off a dodgy internet site. Sleep makes such a difference to quality of life.
Roger that tango Charlie. I was not expecting anything, but once we spoke and she recognised that at current dosage levels anything less than brief naps has proven impossible. I am very risk adverse and very wary of drugs taken, even on prescription. May I suggest an alternative approach, which you may have already tried? If your GP does not feel it appropriate to prescribe, what alternatives can they offer? There are alternative drugs and or therapies which may help you. I am sure that you have asked already.
They say they're addictive so won't prescribe. The more I argue the more they dig their heels in. I pointed out I was on long-term steroids through no fault of my own which has to be prescribed and are technically addictive because you can't just stop them. I think it's another 'anti-women' things, it's predominantly women on l-t steroids who have this sleeping problem and women's issues are dismissed. Tried valerian and various OTC anti-histamines, nothing works. I must say, things are slightly better on depo-medrone injections.
It's been my saviour !.far to long with insomnia.I gave in and asked for help, the effects of nights awake was really taking a physical and emotional strain on my body .Coping with PMR and other symptoms was taking its toll. I still get sleepless nights ,but I do get far more sleep than ever before !It makes you stronger to cope.I have no hang ups about taking it ,one of my better decisions !
I hope to use it sparingly whilst under acute medication only, but how long I will need them for who knows. All I know was that I was awake, not a bit tired and I feel that the final straw and one which demonstrated it was impacting upon my mental capacity, was reading the online version of the Daily Mail purchased for my wife and believing the editorial content.
My norm sleep is 3-5 hours a night (muscle cramps, leg pain...fibromyalgia) & its lousy on a long run, & makes me snappy & negative after a couple of weeks! I take one zopiclone 7.5mg maximum once a week, as agreed with my doctor. Last night I had nearly 11 hours sleep, only woke once to take my steroids & shut all windows...incredibly windy outside! I find them great as I don’t get a hangover, or feel dopey for hours in the morning as I did when he suggested doubling my amitryptylline (wrongly spelt). Actually this time it had been nearly 3 weeks since I took one. I also get dreadful, vicious nightmares from taking Pred, but I didn’t get any last night...& I had blue cheese for supper, which normally leads to an even worse night! I’d recommend it but it is addictive, I believe?
Dorset Blue Vinney, to be precise! Usually a truly stupid move, leading to worse nightmares, & bad indigestion! But none of that at all, due to zopiclone! S xx
Ah yes, Puddletown, haven’t been there for years! Lovely area & not that far from us...we live in the New Forest! I’m a cheesesholic...it’s a serious ailment!
Not trying to put you off, but if staying here make sure you have a booking, everything is packed. We are getting many many more visitors here daily than normal for August. The waste/litter left behind is horrendous & they have volunteer rubbish puckers everywhere. Few toilets are open, so we have human waste issues, too, on the open forest, near the car parks. Avoid areas like Balmer Lawn & Hatchet Pond (they should have police presence there next week...swimming in dangerous deep waters, paddleboarding, parking on double yellow lines etc etc, oh & feeding animals,). There is plenty of forest without the people, too, though, & I guess you know it well! Enjoy, S x
Food is good at the Red Shoot, but we’ve never eaten at the Alice L...guess there’s only about 5 miles between the two! We haven’t eaten out since February when we started shielding: enjoy!
Two nights of half dose and last night I took none. Actually, whilst my sleep was light and broken, the two doses seems to have stimulated my system to at least allow me to drop off, sleep for two hours; for some reason, my system now allows me to drink all day, but only urges me to dispense with it at night, then a further 3 spells of sleep. 6 hours overall with no tablets, which considering I had to cope with some limited post biopsy pain from earlier in the day, an outcomeI am very pleased with
Like many people here, I suspect that increasingly I will lean towards self management based upon expert advice, personal experience and a reducing drug regime.
Still feeling very upbeat. The comfort for me is based upon the security of if I feel low, or just need that good nights sleep, I have access to it. That in itself is as great a tonic as the drug itself.
Thanks for the confirmation. Just so reassuring. I haven’t felt tired one bit. Just the early hours are so boring and when I am reading the Daily Mail it is an indication that I have reached an emotional low. I was considering asking for anti-depressants after the third or fourth time as I started to believe what I read. (No offence to any Daily Mail aficionados)
Have you tried the Guardian online? Or the New European? There are several on-line offerings that can be accessed easily, some ask for donations rather than charging you to even see them.
Subscribed to the Guardian for a while. As a nihilist though I found that their editorial was just as biased and just raised my blood pressure. The New European is something I will look at.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Sorry, it's been a while.
Doctors appointment today (update) 
Living with PMR with no prednisone
The story so far...Part 3!
