I am sorry to create another post on sleeping disorders, but I am struggling to find a definitive answer to a problem I am trying to solve.
My Mum is struggling to sleep but only when she is lying in bed.
She sleeps whilst seated e.g. in riser recliner or wheelchair. Is comfortable in the main, but at night-time after she is tucked in for the night she starts to experience discomfort and this results in her shouting (aka calling out for help).
Unfortunately, the cause is not known and neither is a solution as once she gets going, she can carry on for 3-4 hours continuously shouting and pleading/begging for help. There is not much I cannot understand or accept, but this is one of those things. It is the worst thing I have had to witness and stand and watch being helpless whilst someone is so clearly distressed.
There may be a clue in the observation that the problem is almost certainly to do with lying down. The bed happens to be where she lies down.
I know this problem. Unfortunately nothing I will suggest is guaranteed to help: I will mention 3 ideas (forgive a bit of AI)
Likely cause: Her gut is not flowing. A cow’s refusal to lie down is a critical behavioral indicator of severe digestive distress. When your digestion is so slow and uncomfortable that it prevents you from lying down, it’s a significant sign that something is off. When you lie down, you remove the effect of gravity that helps keep stomach contents and gas in place. Increased Pressure: The contents of a sluggish stomach and intestines can put more pressure on the diaphragm and other organs when you’re horizontal. Acid Reflux (GERD): Slow digestion means food sits in your stomach longer. When you lie down, this food, along with stomach acid, is more likely to flow back up into your esophagus, causing heartburn and discomfort that can keep you awake. as Trapping: Slowed digestion can lead to fermentation and gas buildup. Lying down can trap this gas in different parts of your gut, causing painful cramping and distension. She would sleep better propped up if this is the case. Peppermint is good; I use an oil called Zengest by DoTerre. Try hot water bottle.
Align with the Earth’s magnetic field. There is some compelling scientific evidence that suggests cows and deer do often align themselves along a North-South axis when resting and grazing. The claim originates from a 2008 study published in the Proceedings of the National Academy of Sciences (PNAS). In this study, researchers used satellite imagery (from Google Earth) to observe the body orientation of over 8,500 cattle in 308 pasture plains across the globe. Magnetic Alignment: Regardless of the time of day, the position of the sun, or the direction of the wind, the herds showed a statistically significant tendency to align their bodies along the Earth’s North-South magnetic axis.
Poor breathing? COPD (Chronic Obstructive Pulmonary Disease) & Severe Asthma: Lying down can change the mechanics of breathing and put pressure on the diaphragm, making it harder for people with already compromised lungs to breathe. Pleural Effusion: A buildup of fluid in the space between the lungs and the chest wall. Lying down can cause this fluid to shift, compressing the lung and making it difficult to breathe. Sleep Apnea: While people with sleep apnea do lie down, the sensation of gasping or choking upon falling asleep can create a psychological aversion to lying flat. Fluid build up is a possibility ; it must not get to her lungs
We have also narrowed it down to acid reflux as a result of the discontinuation of the PPI (Proton Pump Inhibitor) Omeprazole. To address this, we have reintroduced the PPI until Mum settles down (assuming this is the cause of her troubles).
Point 2 is something I am happy to consider and I do believe in these things e.g. Feng Shui arrangements. We were thinking of turning the bed round, but I don’t know the direction of the N-S axis. I’ll have to get a compass. Thanks for this pointer.
Point 3 is also valid, as I am seeing a bit of laboured breathing when lying down and again I have linked it to the PPI. Getting fluid into her lungs has always been our biggest concern as she is PEG fed.
So, yes, unfortunately not totally drug free just yet, but this is a minor set back
Hi, sorry to hear this about your mum, I suffered for years with silent reflux at night and do wonder if this may be the case. I would move around and not settle and some days wake up exhausted. It was spotted by my dentist after years of ticking me off for drinking too much fizzy drinks which I did and still don’t do.
He prescribed PPI’s and from then no more poor sleep, horrible dry mouth and taste so do wonder if this is worth investigation. Hope you manage to find a solution and continued well wishes to both you and mum.
Thanks Jbob - I think our problems are a little “self inflicted” as we were on PPI and then stopped at the end of the second round thinking the problem for which the PPI was prescribed would have been solved and any continued use would be as a preventative measure and in keeping with Mum’s philosophy and wishes medicines will not be taken (she did not take Western medicines before the stroke unless absolutely cornered). Had she been able to choose, she would not have gone for the PPIs as prescribed a few months back, but as her advocates we agreed she could be put on them as it would be [legally] in her best interests.
It was a small mistake but the consequences feel severe especially as someone having to watch without being able to do anything significant.
Anyway, corrective measures are in place and Mum is back on the PPI and hopefully in a few days she will be as right as rain and as is her wont, she will likely come back stronger than ever and move on to her next step of recovery from stroke which seems to have picked up pace in the last six months or so.
@ManjiB is she napping during the day? cause if so this will affect her sleep at night. I am aware the brain has to rest and recover but when your sleep is affected at night and you nap during the day, you need to try and stop it and i am speaking as a stroke survivor. In the past I have done the day napping and it makes you feel amazing but then the dreaded sleep all night. The other day though I was at work, therefore no napping and i was awake all night, but that was with osteoarthrosis sever pain in my right knee and honestly I so not know how I made it through the following day at work. Best of luck, but this is a hard on for you as you all must be exhausted. I could never be a carer for all the money in the world.
daytime naps should be 30’-40’ max. otherwise it keeps you awake at night.
you can research circadian rhythms and the suprachiasmatic nucleus (SCN) is the brain’s master clock, a pair of tiny structures in the hypothalamus that regulates the body’s circadian rhythms.
Hi Have you tried using an adjustable bed backrest? I struggled to sleep lying flat on my back when I first left hospital following my stroke and purchased one of these and found it useful. That way your mum will be cozy and comfortable but slightly propped up to help with the reflux.
Like everyone else I suspect it may be avis reflux & putting her back on PPI should help if that is the cause. As @Susan_Jane says propping her up in bed may also help. That was the one thing I liked about being in hospital was being able to raise the head of the bed. Slept much better that way.
Hope you find the solution soon so that you all get a restful night.
Thank you all, @IreneFC , @pando, @Susan_Jane and @Mrs5K for your thoughts and troubleshooting ideas. You all make valid points and observations and indeed we have considered tried these things to no avail.
Sleeping during the day. Yes, she does catnap or even sleep during the day and it is difficult to keep her awake because of the person she is. Also, she has done this pretty much since she had the stroke and whilst she used to wake up at night in the past - she was happy and awake i.e. she would sing songs or just think things through and then doze off again. But this recent change is not a happy one - she is in pain and as I might have already mentioned, we are thinking it is acid reflux.
Adjustable back rest - we have a hospital/medical med that can be adjusted to various positions including a tilt of 30 degrees or so. Also, we have a 4-Way wedge that we can use to support various positions, but this is not helping right now.
Circadian rhythms - as per first bullet point. This has happened, but Mum was “happy” with night being day and we had adapted our lifestyles around that.
PPI is the likely culprit as it is the most recent significant change to her routine/lifestyle/medications. Unfortunately, the consequences are far worse than anything Mum has had to endure. Amazingly, she is still coping.
In closing - thank you all once again. Support very much appreciated and it’s good that we are all thinking along the same lines.
We are detoxing Mum to try to help her by putting on a reduced feed diet and lots of water to flush out the toxins.
During the day she is fine (sitting upright). Last night she was OK until about 3 am and so hopefully she is adjusting.
Also, she has been for a spin round the block in her wheelchair to get some fresh air and exposure to UV rays and has always come back happy.
@pando it was not advice, it was what happened to me. I do not give advice, i am not medically trained. But I can talk about my own experience. But this is not advice, this is facts. Have great day
My husband also struggles with sleep at night time and although he’s always been a light sleeper it’s really only since stroke that it’s a issue. I’ll tell you some of the factors we have encountered. I agree it’s heart breaking to witness.
He wears an Oura ring (was in back of a drawer from a few years before stroke so we can compare before/after stroke) to check on quality of sleep, it’s not 100% but interesting to monitor.
We have a treatment (massage) table downstairs and that’s where he tends to sleep during the day. He seems to sleep well on it during day, always on his back, it’s night time mainly on his back and in bed that’s the issue.
So far issues seem to be
restless legs - a methylated b vitamin (good for nerves) plus electrolytes (mixture of different types of magnesium plus other electrolytes such as potassium) seems to help. We know his iron is high so don’t supplement but apparently low iron can also contribute to restless legs.
sleep apnea - he mainly lies on his back since stroke and early on I noticed although he wasn’t snoring he stopped breathing for long periods on his back. A referral to a sleep clinic confirmed moderate apnea - 27 events per hour. He has a CPap machine but doesn’t really tolerate it, tends to sleep badly wearing it and of course apnea kicks in when he takes it off.
he sleeps well day time. We wondered if he should limit sleeps during the day and have experimented at this point I don’t think there was any benefit limiting day time sleeps.
Red light - we bought a red light (from a company called Rojo) system that has an alpha setting which encourages sleep. He gets everything ready for bed then 30 minutes of red light alpha setting and gets deep sleep almost immediately. We have noticed generally better quality sleep and more healthy sleep cycles during the night following this protocol. The deepest sleep is before midnight which reminds us that “an hour before midnight is better than two after”.
exercise every day
cold feet can be an issue in winter, some socks with silver interwoven from Raynauds association have helped (recommend for anyone feeling cold feet).
we added melatonin early on, not sure it helps but we’ll stick with it for now
try to get early morning (red) sunlight to help regulate circadian rhythm and reduce /eliminate blue lights (tv, screens, phones, esp before bed. Consider reading with a red light before sleep time ( Low Blue Lighting | Red Night Lights & Sleep Light Bulbs ) .
we also tried PEMF it’s said to really help sleep so we rented a mat for a month, but we didn’t really notice a shift in sleep. The rental overlapped with the red light arriving so although the red light is helping still, the PEMF may have contributed and we didn’t notice.
It’s an ongoing battle but sleep is slowly improving, he’s also more mobile now so can get on his side and shift position as needed in sleep.
I hope something here helps. Leave no stone unturned.
Hi Dee - I’m dee-lited (pun intended ) you have shared this with us.
There is some great tips on here and I am pleased I have things to consider. I am particularly interested in the Redlight (which I know Roland @pando is a big fan of) and the Raynauds socks.
I feel I must follow up on these.
If there is a particular model of the Red light product you use, I would appreciate if you would share the details or a link
Thank you once again.
I do have an update in this post and I will add it asap, possibly as a part II which I hope will make for easier reading.
