Lack of sleep

[Ewife]

My OH is finding it impossible to get the right sleep pattern. He's had spells of insomnia before, and periods of having huge amounts of sleep, which was mostly corrected once he started Rifaxomin. Over the past few months he's had more and more spells of insomnia - before Xmas he was awake from 1am every day. He tried not to have day time naps so that it didnt get out of pattern, but ended up pretty much collapsing one morning when he tried to go for a walk. I ended up ringing the consultant who prescribed sleeping pills. But they don't really seem to work. He's had a run of sleeping until 3am so possibly slight improvement, and has to just sleep when he can - regardless of if its day or night. It's sending us mad! Far worse than when he was sleeping all the time. His mood is as low as its ever been. He's worried sick about his business because we had a bad financial year - I'm not sure how much this is causing lack of sleep too 🤔 can anyone help? Ewife

[BritishLiverTrust11 Moderator]

Hello

Until other forum members have had a chance to reply, here is a link to some information about liver disease and sleep management which may be helpful:

britishlivertrust.org.uk/sl...

Best wishes

British Liver Trust

[juneblue]

Hey there. I’ve gone through similar patterns of insomnia. Also have a business and worried about finances. Sleeping pills did not work. Basically when I would wake up I’d obsessively think and worry about everything. Clonazepam or anti-anxiety medication worked for me. It shut my brain down. Don’t take them all the time. Also going to sleep while say a very long prayer. Anything to keep your brain from jumping from one idea to the next. Also ask him to voice his concerns to you and you both tackle them. Some of the things he is worried about may be out of his control. Ask your dr if the meds would harm his liver. Mine said no. One a night would not. I have a rule out Cirrhosis diagnosis. Everyone is different though. Best of luck and God Bless.

[Ewife in reply to juneblue]

Thank you for responding. He is usually a very controlled, positive thinker - although he does need to share his worries more. I have had to quit working again because he's had a spell not being well enough to get into work, and I think me not being around meant he stewed a lot more about things. I also think he's missing his Dad (he used to be his business partner but passed away in 2021). All this is very different to how he normally is. My daughter said thos week that shes missing not seeing his eyes light up.😟 I'm sure his liver function is poor again, his body is just so tired it shows in all basic functions, his appetite is really poor - he weighs less now than what he did when he was really ill. I'm curious if anyone has had experience with HE and insomnia ?

[AyrshireK in reply to Ewife]

These are hubbies main symptoms again at the moment, sleeping just now and will be up and down all night.

He had a spell in hospital due to acute HE in December and is being assessed for transplant some time later this month.

Bloods have been going off for some time and HE is definitely worse than ever. He has though started on L'ornithine L'aspartate (LOLA) which consultant wanted him on back in July but no one then would prescribe - thankfully the pharmacist at Edinburgh has now sent us a 100 doses through the post.

Hubby is very maudlin at the moment (quite understandably) - obviously scared about the future, what if they don't list? what if the wait is really long? very fretful.

I too have had to give up my work just as my business was flying again after the Covid lockdowns. Sadly, hubby is in no fit state to be alone for any length of time which is a massive change from around October time when I was actually away several overnights at times to do my school visits. He's had some absences, falls and obviously also the acute incident of HE which lasted a week or so. Obviously I can't leave him to fend for himself (he just couldn't) plus we are waiting to go through to Edinburgh so can't risk picking up any lurgies from kids in schools so back to 24/7 caring again.

May be see if LOLA is available for your hubby - mine is now on lactulose, rifaximin and LOLA plus back at the high carb, high protein diet plus supplements (fresubin) three times daily.

Best wishes,

Katie

[Ewife in reply to AyrshireK]

Interesting- I've been watching your journey as its very similar to ours. Husband just got delisted last september but consultant wanted to keep an eye on him because she felt it was a matter of time. I knew he wasn't quite as well, even when they took him off but it really did my husbands morale good for a while. Unfortunately because we're now under hepatology clinic not transplant they can't get him back in until April (due Jan) so I've been advised to ring Monday and see if secretary can book him back in at Transplant clinic. I'm not holding my breath! Also, I'm scared that if this is a further progression of HE he will have his driving licence taken, which everyone has fought hard for him to keep. If this happens, it will be game over as far as he's concerned. Never thought I'd get to the point of actually wanting him to have a transplant. I've always been really scared of it up until now.Hope you get in OK at your husbands assessment- please keep us posted.

Ewife

[AyrshireK in reply to Ewife]

We've had the 8 years 'off the list' and done some amazing stuff but the decline since we were away cycling almost 400 miles in the Cairngorms in May to now is massive. At one point in November he fell off his bike and looked at it in bewilderment - he'd forgotten how to remount it. He's become like a little old man (and at 62 he's not that old). We were always told it was a matter of when rather than if he would need transplant and we just hope he gets his chance now. His Edinburgh Consultant phoned me when hubby was admitted locally with the HE and she & I both agreed hubby is far more poorly now than when he was on the list in 2014/15.

I am surprised if your hubby is on treatment for HE (Rifaximin as you mentioned) that he has been allowed to keep driving. My hubby gave up driving of his own accord when he was first diagnosed with cirrhosis in 2012 because he just knew himself that his concentration, energy levels and reaction times were already severely hampered.

I would push for a clinic appointment for your hubby a.s.a.p. It was because i'd been writing letters here there and everywhere to chase up the LOLA prescription that Edinburgh called hubby in early in December and immediately started talking transplant. We saw dietician and she was pushing transplant preparation and got hubby to see physiotherapist too to give us a 'head start' on what they call Pre-hab i.e. exercises to prepare you for tranplant and post op.

Write to his consultant - a letter always gets more attention and action than phone calls or emails especially as you can fully write down what you are witnessing etc.

Best wishes, Katie

[Ewife in reply to AyrshireK]

Thanks, I'll try writing. His Mum wants us to ask if she can be tested for live donor, bless her. That's how worried we've become.The driving thing is an unusual one, because my husband has never shown really clear cut HE. He just began getting very sleepy and slow, and symptoms were much better whilst on Rifaxomin . He always passed standard tests in clinic with flying colours- his memory tests better than some of the staff! So his consultant went to extreme lengths doing some far fetched tests (he had to train staff how to use) doing 1 with rifaxomin and one after cutting it for 10 days. He was more than happy with the results - allowing my husband to carry on driving. I know I will have to be the one to shout if things changed though, as I wouldn't let him continue driving if it was unsafe - even though it means I could potentially be the one to ruin his life. Its heartbreaking when it's relying on you to report things like this, or embarressing things like confusion or slowness.

Take care

Ewife