Disturbed sleep and night games

[JanetRosslyn]

Taking 40mg Pred a day is disrupting my sleep. I’m not worried about it, I’ve been there before, got the t-shirt and trust it will pass as the dosage drops. As usual, I went to bed at 21:30 last night, read till 22:00, slept till just after midnight, then was wide awake again. I felt relaxed and comfortable, safe and warm, happy and grateful to be snuggled up with my husband. I did a few ‘mindfulness’ techniques then played some mind games by making A-Z lists of things… for example, an A-Z of song titles (from Away In A Manager through to Xanadu, Yellow Submarine and Zippadi-do-dah); an A-Z of people in my family (from Auntie Ann through to Xander, Yolande and Zyon); and the last thing I remember is doing an A-Z of things that make me smile and getting to the letter J, recalling an amusing incident with some Jelly Baby sweets. Apparently I fell asleep, and at breakfast this morning my husband told me what happened next…

According to him, I woke him up at about 03:00 by sitting bolt upright in bed shouting, “What? What? What?”

Feeling startled, he sat up and asked, “What?”

I responded, “When? When?”

Feeling confused, he said, “When?”

I shouted “Now!” then laid back down and was fast asleep again!

The things he has to put up, poor man 😊

How do you pass sleepless nights?

[SnazzyD]

I sat with my dogs and looked at the forum posts from the USA with different time zones, plus Scrabble. In the summer it was magic to be in the garden as nature woke and watch the kaleidoscope of colours of the dawn with that essential liquid and brew of tea.

[Hidden]

🤣😂🤣 I think either shout or snore myself awake. I don't mind sleep free nights if I get a couple of hours before I wake up. If it obvious there's no sleep coming I will look at the Internet and forum and then watch an old favourite on TV with my eyes closed or the radio on TV with the screen off. Let the dog out (misery guts). I do try backwards counting from 300 when I feel dozy and never remember past 250.

[Marijo1951]

When I was on higher doses of pred I had insomnia every night. I actually found that it was counterproductive to go to bed early. I seemed to get the most sleep if I went to bed between 11.30 and midnight (i.e. I'd get 3.5 hours rather than 3). I haven't got a nice partner to snuggle up to and I can't do any kind of meditation or mindfulness as my mind just won't stop straying. I spent a lot of money on a mindfulness course to find out it wasn't for me.

When I was awake I just made my peace with wakefulness, got up and did things like watch films on YouTube and knit for England. By the way I shouldn't write as if this is all in the past. I sleep well a lot of the time, but still have regular sleepless nights, probably about once a week. The latest one happened last night, so I got up, switched on Netflix and watched 'El Camino'. A word to you fellow 'Breaking Bad' fans, especially those with a soft spot for Jesse - don't miss it... (off topic, sorry, but fans will understand)

[Hidden in reply to Marijo1951]

I was tryi g to decide whether to watch el camino. Would I need to watch last couple of series of bb to. Get the most out of it?

[Marijo1951 in reply to Hidden]

If you haven't seen them already then I'd say yes because it's definitely for those who know the story up till then. But, if you haven't watched BB at all, best to start at the beginning.

[Hidden in reply to Marijo1951]

I did the first 4 i think. Time to look I think. Cheers.

[HeronNS]

😂

[alvertta]

I take 1 mg melatonin at 10 pm. That usually does the trick til at least 4 am.

[Yellowbluebell in reply to alvertta]

My gp wanted to prescribe this for my insomnia but has been told only a consultant can prescribe it in the uk. She really did think it was the best thing for me so really not happy!!

[alvertta in reply to Yellowbluebell]

My naturopath recommended this a year ago when I was first diagnosed with GCA and on 60 mg. Before that I was up all night, wandering around. The melatonin saved my mental health as I really need sleep. We buy it in the pharmacy. No prescription needed.

[Yellowbluebell in reply to alvertta]

We cant buy it here like that unfortunately. We have tried antihistamines and upping other drugs but i still get on average 3 hours a night since October last year!! Some nights though i get none. I tend to quilt at night. I refuse to to do any housework!

[alvertta in reply to Yellowbluebell]

Trip to Canada soon???

[Yellowbluebell in reply to alvertta]

Well its my 30th wedding anniversary next year and we wanted to do alaska so maybe i should change our destination!

[alvertta in reply to Yellowbluebell]

Start Alaska trip in Vancouver.

[Yellowbluebell in reply to alvertta]

Wonder what customs over here would say?

[alvertta in reply to Yellowbluebell]

No idea. I would just put them in your checked luggage.

[JanetRosslyn in reply to Yellowbluebell]

Housework? Housework? In the middle of the night? That would never have occurred to me in the .first place! Ha ha.

[Yellowbluebell in reply to JanetRosslyn]

I dont do housework much during the day as it is but i used to feel guilty at night if i noticed stuff to do but i have cured myself of that now and spend my time doing more quilting or if i cant be botherednto sew i try and design new patterns. Its a bit like the elves and the shoemaker here though because OH will see a quilt at one stage when he goes to bed and he will.come down in the morning and its changed completely and he will just say "oh you didnt sleep at all again?"

[PMRpro Ambassador in reply to Yellowbluebell]

Has this changed then?

meassociation.org.uk/2008/0...

Maybe worth contacting them for more info?

[Yellowbluebell in reply to PMRpro]

The gp was pretty sure she could prescribe still but when she looked at the updates on melatonin it says only by consultant so she went off to talk to pharmacist and hes confirmed it but it only changed in the last few weeks apparently. I am seeing her again in a month so will email and check the position just in case i can still get it and update her. Thanks for the linkx

[PMRpro Ambassador in reply to Yellowbluebell]

I have a real objection to goalposts being moved - on all sorts of counts!

Anything useful here?

guysandstthomas.nhs.uk/reso...

Does S'ton have a sleep centre? It sounds as if once you get it, the GP can then carry on.

[Yellowbluebell in reply to PMRpro]

Our nearest sleep centre is east grinstead. I can get referred but its waiting list is about 18 months and my gp reasoning is by that time my pred dose will hopefully be low.and the insomnia will have eased!! We have changed the antidepressant because one i have been on it for years and two mirtseems to be more useful with depression and insomnia together. I am getting an extra hour now but this is just on the lowest dose as i swap over from Amitriptyline and should get more when i am on a higher dose, fingers crossed!!

[PMRpro Ambassador in reply to Yellowbluebell]

Is anywhere else any shorter?

[Yellowbluebell in reply to PMRpro]

Will have to look around and see if there are any shorter lists. It shouldn't be so hard to get some sleep!!

[PMRpro Ambassador in reply to Yellowbluebell]

You'd think. But the NHS is in a mess.

[Yellowbluebell in reply to PMRpro]

I know and i suppose sleeping isnt urgent when some of the cancer treatment lists are too long.

[SheffieldJane]

You both sound very sweet to me. It will pass. X🌸

[Hellyowl]

I also watched El Camino last night. Couldn't get off to sleep . woke again at 1:30. Must have fallen asleep about 4 am and alarm went off for Japanese GP at 5:30. So back in bed at 8:30. Raining so a good day to catch up on sleep for next week.

[Arflane97G]

I generally wake up in the early hours but like you, snuggle up to my husband, and enjoy the feeling of warmth, safety and comfort - he has been a huge support and poor thing was so worried in the early dark days before diAgnosis when apparently I completely withdrew- pain was so bad.

[Pongo13]

There is a sleep forum on health unlocked. For me it doesn’t yet seem to have the same success as this forum. With amitriptiline I sleep well. The dr gets jittery about becoming addicted so i keep them for my most desperate days. (I know this isn’t using them correctly). A herbal night aid sees me waking four or five times but I do rest overall so I alternate with Ami. I stupidly used an over the counter sleep aid diphenahydrine hydrochloride (spelling might be wrong) for longer than advised 2 weeks and got killer shooting pains in kidneys - probably dehydration and stress. (All checked at a&e while visiting poor hub in hospital), I was convinced I had an infection.

Before bed - I am careful not to have blue light from devices. No tv. No alcohol. No caffeine. Bedroom not too warm. Blackout curtains. Eye mask. Ear plugs. No drink after 7pm. Mindfulness practiced and counting backwards. Fitbit watch does help me (I don’t obsess).

I was a brilliant sleeper prior to pmr. Or is it now down to my age? I wonder.

And now hub has 3 days of steroids post chemo. I guess we will be up together.

[Brubeck]

Where? How? So many questions!

[Thelmarina]

Love it! 🤣🤣🤣

[MarkWin]

Folks, sleeplessness is an occupational hazard with pred, and many things have been tried, including my GP giving me amitritilene which crucified me as I wanted/needed to sleep 23 hrs a day. Off that after just 6 weeks thank goodness. I still have erratic sleep, and ruminate in the watches. I usually have to get up, make myself tea and read. This really relaxes me and if enough time, I can usually get an hour or so of sleep back. Key is that beds are for sleeping in and if you lie awake in your bed thinking about all manner of things, then it ceases to be a respite from the horrors of the day. Try not to break the circadian rhythm either as it stores up further problems for night time. Hope this helps.

[Jessileigh]

I have to have a good book or I start to panic about 3. Have to get everyone up and ready at 7.

Sometimes a quick soak in the tub will help my body calm.

I fall asleep, then wake myself up 10 minutes later. Then read or get up for a drink or whatever. Then sleep 10. Etc. It gets easier to sleep about 5, then up at 7 and not able to nap. My pain is noticeably better when I can sleep a few hours in a row.

And funny podcasts! Or guided visualization. Good luck!

Jessi