Insomnia

[Bleakley1]

Hi,

Can any of my fellow PMR sufferers advise on sleep problems? I have been on pred for five years now. Currently on 7mg which I cannot seem to get below. Even dropping to 6 1/2 causes pain so I guess I am at my ceiling for now.

The lack of sleep is a big problem though. Sometimes I get only one to four hours and then a night with 9 hours. I would be quite happy with six hours every night rather than this yo yo syndrome.

The trouble is I am absolutely exhausted with little sleep and this in turn makes me feel very ill.

Any advice would be appreciated.

Regards,

Barbara

[DorsetLady PMRGCAuk volunteer]

Maybe have a look through this -healthunlocked.com/pmrgcauk...

..and related posts

[PMRpro Ambassador]

I have found taking my magnesium supplement before bed helps a lot - but there are lots of posts about it, Have a look at the Related Posts which have 10 listed on the same topic. It is a common complaint ...

[Longtimer in reply to PMRpro]

My OH has become quite ill with a total lack of sleep, stress feeling across his body knowing when he is getting ready for bed, and in bed. He went about a fortnight with about 3 hours sleep, first time in 44 years I got him to the doctor....blood tests normal, was prescribed sleeping tablet, Zop licone...most he got was 3 hours 1 night. Now has taken Matarzapine last 4 nights (anti-depressant)....has about 5 hours first three nights, said last night, the horrible feeling was starting, so went for a walk at 10 pm l was so worried, but it gave him 5 hours sleep!...today I feel more ill than him, it has caught up with me now. Can he take a magnesium supplement with Matarzapine?....he thinks a walk every night night be the answer!!Needless to say it will be while yet before I can drop from 7 mg....no stress they say with Adrenal suppression!

[PMRpro Ambassador in reply to Longtimer]

Very helpful isn't it - not adrenal suppression but I was told "avoid stress" the week before OH died, Yeah, sure, provide the help I need ...

Really something to ask the doctor or pharmacist but it looks as if magnesium may help the effect of mirtazapine but it is recommended youget the magnesium from your diet:

healthline.com/nutrition/10...

healthdirect.gov.au/foods-h...

(must be a typo in that, why is oatmeal/porridge in the middle of the 60+mg and saying 6mg!! other sources say 60mg)

seattletimes.com/life/welln...

Sounds like a bowl of porridge and a banana with a bit of dark choclate is a good supper alternative!!!

[Longtimer in reply to PMRpro]

Exactly, how can you avoid it!...this is a first with him dealing with the medical profession....think I will get magnesium, and look up to see if he can take it with his meds....might help me too!....

[Longtimer in reply to PMRpro]

Thank you for that, very interesting how much magnesium we are getting!....OH has porridge/chopped banana for breakfast, fresh nuts during the day. A couple of chunks of my dark chocolate, mixed beans etc.....perhaps the porridge last thing at night!....Will ask pharmacist anyway....

[Bleakley1]

Thanks for the replies. I have looked through all the relevant tips and most of them are worth a try. Anything to get out of this cycle.

[HeronNS in reply to Bleakley1]

I used to try to list all United States in alphabetical order. Got so good at it it didn't occupy me long enough to get me asleep. Haven't needed to do this for so long, the other evening after I'd spend ages playing a stupid computer game before bedtime (big mistake) and hadn't remembered to take my calcium supplement before it was time for pred, I tried naming the states alphabetically again. It did actually work, but I never did count to 50 states because I couldn't remember them all, and after trying a number of times I did, as hoped, fall asleep.

[CricketMonkey in reply to HeronNS]

I can do the US states, the 92 English and Welsh football clubs, and racecourses of Great Britain, all in alphabetical order. Times tables, up to 20 x 20 … not quite perfected all the higher multiples yet!

[HeronNS in reply to CricketMonkey]

Hmm, sounds like this technique doesn't put you to sleep! The best I can do to extend it is to try to do the States in reverse alphabetical order. If that doesn't work, I get up and read or find a puzzle to do. I do try to avoid going on the internet but it was in the middle of a sleepless night, 2015 that I found the Patient PMR forum (found this one later). Last night I remembered to take my calcium early enough not to interfere with pred dose, and avoided internet, and fell asleep right away!

[CricketMonkey in reply to HeronNS]

Fortunately I don’t usually need all of them in the same night … and if I do at least I’m passing the time quietly without disturbing the OH. I try not to let not getting to sleep bother me too much: most days there’s nowhere we have to be early, so if necessary I just sleep in later in the morning,

[piglette]

I have just given in to the lack of sleep, although I do go to sleep watching TV.

[DorsetLady PMRGCAuk volunteer in reply to piglette]

Don’t we all😳…..or an audio book in my case!

[piglette in reply to DorsetLady]

The BBC World Service for me

[HeronNS in reply to piglette]

Working on a difficult sudoku or cryptoquote in the middle of the night is just perfect for boring one to sleep.

[piglette in reply to HeronNS]

I do my daily Wordle

[HeronNS in reply to piglette]

Don't think it would take long enough for me to be put to sleep!

[piglette in reply to HeronNS]

You are probably better at it than I am! I then listen to the BBC World Service.

[HeronNS in reply to piglette]

I am probably more impatient than you are. I like it because it's only one word so it doesn't encourage frittering away hours!

[piglette in reply to HeronNS]

I agree. The guy who wrote it got it just right. I suppose he is a millionaire now having sold it to the New York Times.

[HeronNS in reply to piglette]

Yes. We've all been wondering what that will mean eventually The newspaper obviously has to get something out of it. Maybe it will be franchised to papers all over the world, but it would have to be for digital editions. Therefore not free. I came across a knockoff where there ws a request for donations. Only knew it was a knockoff because I'd already got the day's word, and this one was different, but I was trying to find out why I didn't have the "share" option. Turned out it's a browser issue, I use the authentic site, but the knockoff looked identical except for asking for a donation!

[piglette in reply to HeronNS]

It seems there are several look alikes. They reckon the New York Times will sue them. My nephew thinks we will be bombarded with advertising emails.

[PMRCanada]

When I was suffering from PTSD (a workplace injury), I really struggled with sleep due to the night terrors I experienced. Once I was woken up from a nightmare it was almost impossible to get back to sleep.

I tried Zopiclone which worked a bit, but the problem was I could never take it at bedtime because I couldn’t predict when I’d have the night terrors. If I took it in the middle of the night I’d be groggy the next morning. I also didn’t want to become dependent on a pharmaceutical to sleep either.

So I tried consuming indica dominant cannabis and it did the trick. I could control how much I consumed and no groggy feeling the next day. It also helped with mood/anxiety. I have vaped, smoked and tried edibles with success, however the edible form took longer to take effect but was not as effective in helping with sleep issues.

Now cannabis is legal in Canada, so this may not be an option where you are. Or you may be able to explore a medical prescription for your OH. Please be advised that the effects of consuming marijuana can be different for folks, especially if there mental health issues (diagnosed or not). Something to discuss with the physician first before trying.

Just as suggestion/possible option. Not for everyone though.

[Daffodilia]

I use Tropics pillow spray

[Suffererc]

Have the same problem. Doctor says get Nytol or similar but they all end up making me feel ill

[Broseley]

Lavender sleep spray on my pillow. But the biggest difference has been taking my Calci-D at bedtime.

[Iamfedup]

I take just 5mg of amitriptyline and rather than waking at five every morning I now sleep till about 7-30

[Uglow]

Hi I take cbd gummie bears nearly always 9/10Hours. Only get from a trusted source.

[tangocharlie]

Inulin seems to be the new wonder thing to try, I keep seeing articles on the internet. It's some kind of prebiotic. Michael Mosley and other insomniacs are researching it. Mind you all the books on how to sleep well say check with your doctor to see if you have an underlying condition causing your insomnia - well we have - both the illness and the steroids. I'm really tempted to buy illegal sleeping tablets on the internet because doctors refuse to prescribe them. I'm sure a good night's sleep would do me wonders

[PMRpro Ambassador in reply to tangocharlie]

Have you asked herself about sleeping problems? If she supported you the GP might change their tune.

[tangocharlie in reply to PMRpro]

Good idea, I'll ask her, thanks

[Pr0jection]

I don't know if this will help but it appears to help me. Despite all the recommendations about not eating close to bedtime, I always make sure I have a bowl of banana and yoghurt followed by two large squares of 85% dark chocolate about an hour before I go to bed. This is after my evening meal. I have half a cup of camomile tea and half an antihistamine (the kind that make you drowsy) while sitting in bed. On these colder nights I have the electric blanket on too. I have been managing to sleep for about 7 or 8 hours, admittedly with several pee breaks but I do manage to go back to sleep afterwards. Oh yes, and I try very hard not to overthink things because this leads to stress (for me). All the best to you.

[Sharitone]

I'll put in a small, unpopular, vote for sleeping tablets: I have zopiclone, am probably dependent, but not to worried about that as I have been able to slowly reduce the dose with pred reduction. My GP was keen to protect sleep with this illness. And I do get the 6 hours per night. However, I'm a bit different from you in that I do not get the occasional long night. but it might be worth considering if nothing else works. It is so nice going to bed knowing that you're going to go to sleep at least for a few hours.

[whitefishbay]

When I have had sleep problems for a while I take 1/2 or one Panadol PM. It is not strong but you feel drowsy so you fall back asleep. Does anyone at this point sleep through the night? I haven't for years.

[PMRpro Ambassador in reply to whitefishbay]

I often do now - still have the odd night where something wakes me though

[whitefishbay in reply to PMRpro]

It's ups and downs really isn't it. My trouble now is not hearing both alarms when it is time to get up.

[PMRpro Ambassador in reply to whitefishbay]

Does that matter? Any excuse for a lie-in - and if you are asleep, I reckon your body is telling you you need more ...