advice re poor sleep pattern

[lynnie0369]

Hi my husband was diagnosed out of the blue with alcohol related liver cirrhosis exactly one year ago today. He hasn’t had a drink since and has lost 4 stone in weight due to healthy diet and excercise and generally feels so much better. He has no varicose or ascites and it was only picked up through a routine blood test. He was not a heavy drinker but he was a regular drinker and has had no issues not having alcohol. So it’s all going in the right direction but the main issue he has is poor sleep. He gets to sleep ok and sometimes gets a good 6 hours but most nights it’s very broken and some nights it’s only a few hours. This is starting to get him down and is the main thing affecting his quality of life. Does anyone have any advice or suggestions about anything he can take to aid his sleep. He has a telephone consultation with the consultant this week and will speak to him but just wondered if there was anything else he can do. Thanks Lynn

[AyrshireK]

Poor sleep is often part of being ill with liver disease - certainly has been one of my hubbies major symptoms from day one and we've never really properly combated it.

It can sometimes be linked with a symptom of cirrhosis called Hepatic Encephalopathy which can lead to sleep pattern changes. On your hubbies consultation call he should ask bout this and whether he should be on treatment (if he isn't already) - first line treatments are usually Lactulose (to fix toxins and make sure he's moving his bowels 2-4 times daily) and Rifaximin.

More details about HE at:- britishlivertrust.org.uk/in...

The BLT has a page all about Sleep Management which might contain some useful nuggets of information for you both. britishlivertrust.org.uk/sl...

(My hubby and I have never managed to sleep in the same room with his diagnosis because of his irregular sleep and me needing mine undisturbed).

It's a horrid disease, your liver does 500 different jobs and when it's damaged it seems to pick and chose which ones of these jobs it is able to keep doing which is why there is so much variation in the symptoms that different individuals experience.

Best wishes,

Katie

[lynnie0369 in reply to AyrshireK]

Hi Katie, thanks so much for your reply, I am glad I have found this site. I have had a look at the links you sent. He already does most of the things on the sleep management page and he doesn't really have any of the symptoms of HE but its worth looking more into that and I will definitely get him to speak to the consultant about it as he isn't on any medication for this. He has always suffered from a bit of constipation but he manages that now with a very high fibre diet but that's something worth looking into more and maybe looking at patterns. We are in a similar situation where I have to get up for work but he doesn't so I can sympathise with that, although we are managing at the moment. I see you are in Ayrshire, we are in Dunbartonshire so not too far away from you.

Take care, Lynn

[AyrshireK in reply to lynnie0369]

'Change in Sleep Pattern' is a listed symptom of HE - obviously the stress of a new and serious diagnosis doesn't help either. It was sleep disturbance that got our Ayrshire consultant to first begin the process of sending hubby through to Edinburgh in 2013. Local Doctor was only a gastro with no liver specialism so HE wasn't something he really treated very often.

Constipation is your worst enemy with cirrhosis as it means you arn't getting rid of toxins and whilst a high fibre diet is good for helping with toiletting the lactulose has special properties that means its not just a laxative but can actually help to remove toxins.

Definitely worth asking about.

Yeah, we are down the road in Bonnie Ayrshire though we spend some time up in Dunbartonshire (I do workshops in Schools plus parents have a caravan at Balloch so we visit up there frequently).

Katie

[lynnie0369 in reply to AyrshireK]

That's really interesting to know and I will be looking into this for sure, anything is worth a try. He doesn't have any problem getting to sleep but after a few hours he is awake again and its very hit and miss if he gets any more sleep after that. He tries to avoid having a nap during the day but some days (like today) its unavoidable as he just cant keep his eyes open. Anyway thank you so much again, that's been a great help and something to look at. We are in Alexandria, not far from Balloch Park and I sometimes come to Ayrshire for work, and in the summer we bring the dog down for a day out to Seamill to the beautiful beaches.

[AyrshireK in reply to lynnie0369]

Hubbies usual pattern was 4 hours sleep then awake and struggling to get back off. Ironically he functioned better on these days than on the very, very occasional night when he had a full night. In the early days he was only wakening during the day when I woke him for meals, he had a few decent years where that situation improved and he needed little to no day time naps. Sadly, he has deteriorated massively in the past 4 months or so with HE and all it brings with it being his major symptom - broken sleep every night, sleeping loads during the day and zero energy. My hubby is off for transplant assessment on 23rd of this month having been diagnosed with cirrhosis back in April of 2012.

Katie

[lynnie0369 in reply to AyrshireK]

Sorry to hear that things are not going so well and good luck on the 23rd with the transplant assessment. It must be a very stressful time for you both but hope it goes well. I believe it is quite an in-depth process but at least its a start. I will keep my fingers and toes crossed. Take care Lynn

[AyrshireK in reply to lynnie0369]

Cheers, yeah we've been through it before so we at least know what's involved that way. Just feels like we are 'spinning plates' at the moment trying to make all our plans fall into place.

Best wishes for your hubbies consultation - if you don't feel the telephone call gets all the information you need push for a face to face. Within seconds of my hubby walking into Edinburgh clinic in December his consultant saw the physical changes in hubby which she couldn't have done on the phone. We've had a registrar tell us that phone consultations are absolutely no use for liver patients.

Make a list of all your questions and be organized for the call. Deffo ask about lactulose and even Rifaximin - try to nip any signs of HE in the bud.

Katie

[lynnie0369 in reply to AyrshireK]

Thanks Katie, Yes the telephone consultations are not ideal and we have had to push at times for blood tests and then push again to get the results. His consultant is based at the RAH and we have only seen him once in March, all other conversations have been on the phone. You have helped me so much today so thanks again Lynn xx

[AyrshireK in reply to lynnie0369]

Yep, i've done lots of pushing and/or gentle prodding over the years - emails, letters, phonecalls to make sure tests are done in time, chasing up promised appointments etc. You have to be your own/hubbies health advocate and make sure he gets the right care.

All the best, Katie

[Fibro2021 in reply to lynnie0369]

Hello. As already written by Katie, lack or absence of sleep may be associated with persistent hepatic encephalopathy in diffuse liver diseases (this is not only cirrhosis but also other known conditions). Impaired detoxification function of the liver and the accumulation of intestinal and other toxins in the body, as well as portal hypertension, lead to brain damage and the development of hepatic encephalopathy, one of the earliest symptoms of which is sleep disturbances. Initially, this may include increased fatigue and daytime sleepiness, followed by early morning awakenings and inability to fall asleep. Hepatic encephalopathy can be suspected by detecting elevated levels of ammonia and/or low levels of urea in the blood, as well as psychometric studies - a number-connecting test for example. Correct treatment of hepatic encephalopathy may help to improve sleep, reduce fatigue, and improve cognitive function. Usually lactulose, rifaximin or LoLa are used, often in combination to increase the effectiveness of treatment.

[lynnie0369 in reply to Fibro2021]

Hi many thanks for your reply, this has been very helpful. We are definitely going to speak to the consultant this week regarding the possibility of medication. All the help we have had on here is very much appreciated.

[Rshc]

my partner diagnosed with ARLD, was decompensated and on the transplant list now very well compensated and off the list still really struggled with sleep and has never had HE so far, just a very disturbed sleep pattern that sees him waking in the night for several hours. No suggestions on how to combat it sorry but just wanted to say it does seem like a fairly common symptom of LD

[lynnie0369 in reply to Rshc]

Thanks, it does seem to be a very common problem but has such a huge impact on qualify of life. Its good to hear your partner is doing well otherwise. Take care x

[Spiff]

Morning Lynnie ..you say that your husband was diagnosed after a blood test has he had any scans....or biopsies etc. I hope soWith sleeping I use a lavender mist over my pillow ..it helps me ..though he might think its not for him ..I wish you well ..

[lynnie0369 in reply to Spiff]

Thank you, we have tried that sort of thing but it hasn't really helped. He was diagnosed with ultrasound and blood tests. Many thanks Lynn

[Ewife]

Hi, much sympathy with this sleep thing. My husband has been really struggling with it lately too. It's a nightmare. My husband was told to make sure his bowels open at least 3x a day. It's definitely worth you asking about Rifaxomin too.I've also noticed that it's worse when he gets overtired, oddly, and also out of routine.

It's also been suggested that dehydration can affect the toxins being flushed out or not - although this has to be balanced with his ascites treatment.

Previous to this latest episode, the only times he would struggle were if he'd been out for the day on business, or at a social day event or something similar - so I defo think there's point in all of the above.

We're currently waiting an appointment though, as it has suddenly become really problematic, and tbh, nothing is really helping. He has other increased symptoms of his liver struggling too unfortunately.

Wishing you a successful consultation, keep us posted!

Ewife xx

[lynnie0369 in reply to Ewife]

Hi, thanks for your message and we will definitely look into the medication, and I will let you know how we get on. Take care Lynn x

[juneblue]

Hello. Similar symptoms here. Six hrs is great. Mine was usually 1 to 2 hrs. My insomnia was from obsessive thinking/anxiety. I would lay there and worry about things I had no control over. Dr prescribed Clonazepam prn. Worked for me. Talk with your dr about it. Hope this helps. God bless.

[lynnie0369 in reply to juneblue]

Thank you, Lynn