Save me from a Zombie Christmas?

[whisperit]

Another day, another problem....this time it's my chronic sleeplessness. Plus the resulting zombie-fication during the day.

Here's the picture - I have been on prednisolone since April, slowly tapering down to 8.5mg, but have been finding it increasingly difficult to sleep. During the day, I am permanently zombified - I can hardly get out of my chair and find even normal conversation draining .

The "interesting" thing is that throughout the night I keep dropping off, experience about 10 minutes of dreaming, and then wake with a start with a racing heart and wave of nausea. After about 30 minutes, the unpleasant feelings ease and I begin to nod off again. I drift into a short dream - and again wake suddenly, heart racing and nauseous. This goes on ALL NIGHT LONG. It as if each time I start to begin the transition from dreaming sleep to deep sleep, some automatic process trips off the "cortisol awakening response" and shocks me awake again.

On a typical night, adding it all together, I might get 2 hours of dreaming sleep - but this is obviously repeatedly broken - and virtually no deep sleep.

Is this familiar to anyone? Any thoughts or ideas for breaking the cycle?

(I have tried zopiclone, with little effect. I also take a B blocker, btw)

Thanks x

[Hidden]

Has anyone ever tested you for sleep apnea? I have very similar sleep pattern to yours apart from my one night a week with Zopiclone. Remind me if you are diagnosed with Sjogrens or not? Sjogrens is apparently the rheumatic disease most closely linked with fatigue so the blood hound/ sleuth in me says that it might be part of the dysautomia associated with SJS. I was just about to post here about the palpitations so I do relate strongly - much sympathy x

[PMRpro in reply to Hidden]

That was my immediate thought too TT.

It's not going to happen before the New Year - but a sleep study sounds called for.

[whisperit in reply to PMRpro]

Every time I go to my GP - which is A LOT! - I suggest some new investigation or referral. I think they are getting fed up! x

[PMRpro in reply to whisperit]

Saves them thinking as much! But I really do think a sleep study is needed...

[whisperit in reply to PMRpro]

I'm vegetarian, thin as a whippet, and never drink or smoke. Is there no justice??!!!

[PMRpro in reply to whisperit]

And I'm overweight, love all food and wine and have enjoyed it - didn't smoke though. And my autoimmune bug isn't anything like as bad. No, no justice at all. Sorry.

But we aren't dead yet - and they could find a cure...

[whisperit in reply to Hidden]

Yes, Sjogren's is one of my diagnoses. All this is still new to me - I was perfectly healthy little more than a year ago, and still hill walking in April. I keep posting all these questions trying to make sense of how I can have become housebound and operating in "barely getting by" mode within such a short space of time. It has to change!

Thanks for your continuing support, Twitchytoes, it does make a huge difference. And I hope things look bright for you this Xmas! x

[Hidden in reply to whisperit]

Oh I completely understand the questions Whisperit. The difference between us is that I've never felt well or fit despite trying my hardest to be healthy and fit. So my expectations aren't that high and I don't think I'm ill just because I need to sleep a lot and wake with sweats and palpitations or whatever. However there are symptoms that drive me to despair when they flare and other symptoms like the palpitations and tinnitus that bug the hell out of me.

I'm always happy to play detective rather than just shrug and accept the unacceptable. I did just shrug for 45 years but then had a taste of being diagnosed and effectively treated, lost a lot of weight and felt good enough to realise what I'd been putting up with for decades. Now I feel that to accept this rubbish unquestioningly is to accept being bullied by my own dodgy immune system. No way! X

[whisperit in reply to Hidden]

So you're not only patient and compassionate, you're one tough cookie, TT ! X

[Hidden in reply to whisperit]

No no no I'm really not patient or that tough W! although I certainly have loads of compassion for anyone in your shoes. I see a counsellor infrequently because I got very severely depressed at one stage a few years ago. This was caused by vitamin D deficiency and once I'd got my GP to acknowledge the results of my private testing (he refused to test me!) I realised that doctors very often fail their patients by being inadequate detectives. The rise in Vitamin D levels sorted out the depression within a month.

However I'm a realist and decided that, under increasing NHS constraints, the job was going to fall largely to me to manage my own research and investigations.

My counsellor calls this brave but as I told her to me it's just practical self interest! Courage is a term I reserve for those who risk their lives voluntarily to help others in refugee camps or war torn regions or who help the homeless closer to home perhaps.

I just do whatever I have to do in attempt to improve my own quality of life. But I do derive huge personal satisfaction from sharing my findings and observations with others on similar journeys in the hope that it will help x

Ps I haven't yet had the guts to request a sleep apnea assessment either!

[PMRpro in reply to Hidden]

Not really in the same league (it's only PMR) - but with you all the way!!!! Must be twins separated at birth...

[EOLHPC]

👋👋👋👋

Am with twitchy & PMRpro: sleep apnea?

The other day @ my gp appt to request referral to gastroenterology, she implied I'd be unlikely to get a date sooner than 3-6 months. I then asked her for nutritional advice as this wait would mean I'd continue to be unable to eat veg & fruit ongoing. She looked surprised and asked if I'd been referred to a nutritionist. I said no (I didn't even know these exist on the NHS). So she referred me. I sat there AMAZED to find myself so easily getting a referral I hadn't ever imagined I could be given 🙃.....we're justifiably traumatised by our gp's begrudging sadistic attitudes to the multiple referrals complex immune dysfunction & connective tissue disorder patients need & deserve....I end up pathetically grateful for a nutritionist referral. Go figure! And then I had the supreme surprise of immediately getting an Urgent Pathway gastro appt for Jan 4....I put this good fortune down to the A4 page of signs & symptoms points I handed to my gp when requesting the appt: once she & her partners read it, they must've realised there were so many red flags that they had to expedite my referral. Now I realise I probably should've prepped this sheet back in autumn 2015 when the gastro flare began.

But I didn't mainly cause, like you, I felt inhibited because I've had to ask begrudging gps for so many referrals over the past 6 years....now, thanks to this gastro referral episode, I'm finally WAKING UP to the fact that I rightfully deserved EVERY one of those referrals...they've ALL FLIPPIN HELPED ME LOADS by identifying underlying causes & by seguing into treatment plans which are greatly improving my quality of life.

In fact, my gp should've been offering these referrals before I even asked for them. But, no, I had to tough out 40 years of worsening multisystem degeneration & cumulative damage in the diagnostic wilderness being patronised & neglected by health system medics ...and I had to join our wonderful LUK forum to finally get to the point where I am more confident & informed about stuff like using NHS Choices & NICE websites in order to produce a totally genuine 1 page case for referral that my gp practice cannot scoff at because my case points hit all the right buttons

Apologies, mike, for going on & on. Am just so angry at how you're being treated. Am feeling so frustrated by the way the system is handling your clear need. As you've said, your health issues are sudden severe onset & persistence pattern: you need multisystem investigations. Multiple referrals are inevitable because you're diagnosed with serious incurable systemic illnesses

I know most of us here are identifying with your struggle. You're right: this has to change...and maybe a cast iron case for referral to a sleep study unit can lead to breakthrough insights that help you forge your way through the roadblocks you've been encountering

That's my Christmas wish for you, mike

Take care...courage....

🍀🍀🍀🍀 coco

[whisperit in reply to EOLHPC]

Thanks, coco. Being unable to eat fruit or veg must be a nightmare, but perhaps your years of struggle are paying off at last. As you say, too often it feels like one is begging favours when one questions medics and asks for tests or referrals. I have another GP appointment in a week, so will try to document the sleep issues carefully. Meanwhile, I will try to make some adjustments in my bedtime regime.

I do hope you have a great Xmas, and that Santa brings you everything you wish for! XXX

[EOLHPC in reply to whisperit]

Thanks mike...& you're welcome...

...well, felt good to vent a bit 😆...your situation is eminently ventable!

Because I've spent 30+ years feeding my "no roughage" hero crohns bowel stricture woodsman husband, am finding there is actually an upside to my diet exclusions: LESS EFFORT in the kitchen & washing up 🤗...am getting used to an easier life (NEVER thought I could...have always been nearly vegetarian...but: needs must 😉)

Take care 🎄🌟🕊😘

[PMRpro in reply to EOLHPC]

Could identify with that Coco!!! Mine doesn't find it difficult not eating fruit and veg (I keep telling him that chips don't count as veg but he doesn't care...) so since I do it means to different meals every day nearly. But I am highly skilled in producing meals with the minimum of effort. If it takes more than half an hour to prepare I'm not interested. And recipes with more than 4 ingredients? Not for me...

[EOLHPC in reply to PMRpro]

😆👍😘🎄🌟

[4373]

You might check medication side effects or medication incompatability. Best to you. Going without sleep is just plain miserable. Blessings.

[whisperit in reply to 4373]

Thanks, 4373, that's a sound idea. I'm going through them right now to see if I can reduce anything that might be making things worse. As you say, sleep deprivation really is torture.