Sleeping too much?

[GrandmaDylan]

I don't sleep well at night so I usually don't wake up till about 10am. I am anaemic which obviously makes me feel tired. Today I got up at 10am, had a cup of tea and fell asleep until 2pm! This is ridiculous 😴 I'm concerned that this could be HE, thoughts anyone? Deb

[Hidden]

Hi

I'm the same, I feel exhausted all the time. Love and hugs Lynne xxxx

[GrandmaDylan in reply to Hidden]

Hi Lynne, I've had fibromyalgia for about 15 years and I'm used ti the constant fatigue but this is getting ridiculous. I could sleep the clock round.

Hope you're not feeling too bad. Take care. Deb

[Hidden in reply to GrandmaDylan]

Thank you, I've got fibromyalgia too, it does drag you down doesn't it? Xxxx

[IAintNoMensaBut]

Had same problem. Thankfully it is much better now. I do have slight HE from time to time...lactulose and xifaxin seemed to have helped greatly. However the return to normal sleep did not coincide with starting those meds. So although I'm sure HE had something to do with it, I don't think it was solely responsible. There are other meds and conditions associated with ESLD that also can cause insomnia. I think in my case it was also to a large extent due to anxiety...both of my diagnosis as well as anxiety over the insomnia itself ("Will I sleep tonight? Oh God I hope I sleep tonight."

I would think back of any symptoms of HE that you might have displayed and look for any symptoms in the future. Many times the patient himself doesn't realize he has HE. Someone else notices it. So make sure to ask friends /caregivers as well. Take your observations to consultant. At the very least he/she can put hubby on lactulose which is just a sugar solution that "encourages" bowel movements so things don't sit in large intestine and your body doesn't absorb as much ammonia as normal. Think of it as a diuretic for the bum...when you have to go, you have to get to bathroom pretty quickly. Another side effect is diarrhea. But since it's not a medicine per se you can adjust the dose up and down as you see fit w/o asking the doctor.

Good luck! But know that is a chance that it will go away...it was so maddening and being tired all the time, sleepiness made all the other symptoms seem worse!

[Hidden]

Hi Debs the hell you are going through is hard to imagine it seems so obscene...

From a personal view

I had HE for several years and so agree with mensa about not always recognising the HE yourself . My wife was forever telling me I was talking rubbish and of course I denied it vehemently! But when you get HE badly as you probably know you go completely dollaly -which happened to me many times.

But coming back to sleepless nights I can’t say I could correlate sleepiness with HE. I stress this is my view only!

However since just before (a few months) my transplant I started to fall asleep all the time including, as I have said before, falling asleep during a CT scan and an operation (local anaesthetic only) on a finger 😁

Since my transplant I am worse than ever falling asleep at the “drop of a hat” (odd expression that 😁) all the time, but not being able to sleep at night! Consultant said it was tablets. Like an idiot I forgot to ask which ones.

Of course my family say that I can’t sleep at night because I’m always sleeping in the day. You know what a load of whatsits that is!! 😁

So Debs, as you can see, I’m a waste of space when it comes to analysing your problems.

Here’s wishing you some good nights sleeps....

Miles

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[GrandmaDylan in reply to Hidden]

I know what you mean when you say you fall asleep anywhere. We went to see J K Rowling's The cursed child last year in London. We watched the first half in the afternoon and went back that evening to watch the second half. I fell asleep for most of it 😴 We go to a pub quiz every Monday and I was tempted not to go as I just wanted to sleep tonight but I forced myself as I don't want to waste all my life sleeping. That said I fell asleep on the way there 😂

I finally go to see someone at the hospital on Wednesday but it says it's an appointment with a doctor within the general medicine team. I am determined to see someone who is an expert in liver disease. I have been waiting for this appointment for more than 20 weeks and I feel like my life has been on hold since june. Deb

[Hidden in reply to GrandmaDylan]

Oh sugar I wrote you a long (as usual for me) response but its gone somewhere but not on this forum!

In summary and succinctly

First para made me snmile but I know it’s serious!

2nd para. That is a shocking wait! Trouble is we all seem, in the most part, unable to do anything about it.....

Miles

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[GrandmaDylan]

I just feel like my life has been on hold for the last few months but hopefully Wednesday will bring some pro active treatment.

I wrote a great long message on what I thought was the fibromyalgia board but reading it back it was on the thyroid board 😕 I'll just stick to the the liver site...it's a much more interesting and informative one anyway.😂

[Hidden in reply to GrandmaDylan]

Hi Debs just thought re waiting - this is not anywhere like your wait - but you have to think WHY...

I started to have new pains underneath my tp scar that suddely appeared as if I had stretched my stomach. Went to my GP (best doctor in the practice imho) and he said the wound was hot in two places and I better go back to QEHB - 2 hours each way. Rang and got an appointment at QEHB clinic the next day 🤙

Very efficient next day at hospital as usual. All the works, BP, weight, Bloods and then saw the consultant. I had the feeling she was in a hurry and, to me, she didn’t seem to take much notice of what I told her, particularly about what my GP had said, and the fact I now couldn’t walk upright and it HURT! She felt around my stomach with her gloves on (hmm heat feeling gloves - NOT) with me wincing away, where previously there had been no wincing 😁. She then went on at length about why wounds hurt (but it hadn’t hurt a week before! Head against brick wall!). Said OK, at next clinic in 2 and half weeks, we’ll do a USS. WHY oh WHY make me wait for a USS when I was quite prepared to wait that day having travelled all that way to QEHB?? I mean in the end it may be nothing but I would appreciate knowing that now rather than fretting!!

Rant over - as I said, not in same league as your situation, but nevertheless very frustrating. This is the very first time I have been (gently) critical of QEHB. I guess it’s just which consultant you see.

All the best

Miles

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[GrandmaDylan in reply to Hidden]

Hi Miles, sorry you're in pain, it sounds like she wasn't concerned about the possibility of an infection. If you're no better tomorrow I'd go back to your gp. You can't risk leaving it after such a big op. Take care. Deb

[Hidden in reply to GrandmaDylan]

Thx Debs - hate making a fuss....

[alfredthegreat in reply to Hidden]

Hi Milo. Why is it that when you have something that is a new condition it's so hard to get medical staff to listen? I have similar problem with my back! I keep saying that yes, I did have backache straight after the TP along with all the other pain but all of that started to subside over the next couple of weeks and I started to cut right down on painkillers and then suddenly my backache turned into really bad pain that winded me when I stood up and it keeps me awake at night unless I really dosed myself up with pain meds. it seems sometimes that they think that you don't know your own body. My GP arranged an x ray, I had it today and results will be at my next clinic meeting. Very frustrating as you say. There are times when you just have to push!! That's my whinge for the week! Alfie

[Hidden in reply to alfredthegreat]

You are so so so right alfred.

Whenever I went to the liver clinic (well at least for the last two years) I said I was having problems with my walking with pains (not sciatica- I had that when younger 😁) in back, hips, and legs and basically it got glossed over - in fairness the liver problem was more serious 😁. Anyway (and I’m getting to the end of my diatribe - well its a mild diatribe 😁) eventually went to my GP. Much pulling and pushing of legs later he said i needed an MRI scan. That showed the spinal cord being touched by something - has to be spine I guess 😁.

Anyway what I’m working around to is have you had an MRI scan alfred?

Miles

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[alfredthegreat in reply to Hidden]

No, Just xrays today. If they don't see anything untoward on them I hope that they will look for other causes. At least now that my op wound is healed I can wear a strong elasticated support belt and it helps quite a lot. It stops the really sharp pain when I get up from a sitting position but there is still a constant ache. I have a hot water bottle, paracetamol. meptid, gabapentin milpharm and occasional oxy codon to help kill pain but it seems to be oxy codon that works the best. I'm trying to only use that when desperate because it's addictive (and I can see why!). When you have your op I expect that you will be in hospital for a while. Worth it though if it does the trick. Alf

[Hidden in reply to alfredthegreat]

My goodness alfred are there any more types of painkillers 😁 or maybe 😟. I find 30mg codeine works best for me but I also have the Gabapentin! Last doctor said NO operation for at least 3 months (not even cataract or flu jab hehe!) and back operation wait 9 months 😢.

Well just being here is worth a little pain.

PS I keep getting told by family to lay off codeine because, like your oxo cubes, they’re addictive. Keep them in my bedside table so I can take when my wife is zzzzing 😁

All ze best freddie - (you can tell me to bog off, I mean you can tell me to be more polite and address you by your proper name 😁, at this point al - excuse language 🤭 )

Kilos

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[alfredthegreat in reply to Hidden]

Selim, you can call me what you want cobber. I just wonder maybe if I would be better on one really strong pain killer than many different types. It might be kinder to my new liver! Derfla

[Hidden in reply to alfredthegreat]

Lol derfla, had me thinking never heard of that painkiller till I discovered smirnoff the effect was shattering....can you remember that! Not that I ever could stand vodka. (Fuuny my memory was we used to say “ the effect was devestating” but I googled it and it said shattering not devestating. Hmmm brain fog?

Selim

Sodabrab ot gniog mi ho

[alfredthegreat in reply to Hidden]

Lol Slime, You just reminded me of how my dear old mum used to go round in the house singing 'Trebor mints are a little bit minty'. Also if she got a buy one get one free at the local supermarket she used to say to me take one of these 'they were take one get one free'. I told her that sounded a bit like shoplifting to me, lol. Yes I remember the old adds and also the ones where they made smoking sound good for you. Remember Consulate, cool as a mountain stream. Also remember what a jolly fun thing it was to drink Watneys Red Barrel. Talking about memory again, mum used to sing 'Gives you a sparkle....cleaning your teeth' I'm sure the second part of that was' Premium Tea' and nothing to do with toothpaste! Keep on truckin'. Lardef.

[Hidden in reply to alfredthegreat]

Lol you make me laff! We better be careful else richard will say we’re making this forum into an offshoot of facebook 😁

But yes i remember consulate and red barrel ( best drink there was 🤬)

Kilometres

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[Hidden in reply to Hidden]

Kilometres 😂😂😂 Did you vote remain by any chance? 😅

[Hidden in reply to Hidden]

Porquoi?

[ENuk]

I have PBC and feel like this. Even after lots of sleep I don't feel energetic.Like you I feel I could be sleeping my life away!

This post was from RNGB last year and has useful info.

"Liver damage causes it. People usually think, the brain (having a stroke) and the heart (having a heart attack) are the only real important organs in the body. The liver is just as important. An analogy I like to use is a steam train. The brain is the driver, the heart is the engine and the liver is the coal fire that drives the engine.

When the coal fire isn't working properly the engine (the body/heart) can't function a 100%. If your liver is not functioning properly, your body will not be getting its energy properly and will want to shut down (sleep/rest) to recover. It is normal for people to think, I eat, I put food in my stomach, it has energy, job done. But it is not, the liver has the job of converting food to energy, otherwise it just gets converted to waste product.

Also the liver stores energy. Back in the day, you could have a full English for breakfast and skip lunch, because the would keep you going the whole day. The hospital dietician said to me, my liver can only store energy for two hours. So regardless of what I eat, I should snack mid morning, mid afternoon and before I go to bed. That is why you feel tired, because your liver cannot process food properly and store energy. So your body shuts down"

I will try a diet change and see if that helps.

[GrandmaDylan in reply to ENuk]

I had lost 35lb between January and may this year and felt great. I still needed to lose another 2 stones ideally but since my cirrhosis diagnosis I have put 9lb back on despite trying to be good most of the time. I tend to have porridge an hour or so after getting up in the morning then a proper dinner about 6pm. I struggle in the evening which is when I want to eat cheese and crackers or something tasty or sweet. I had some roast chicken before bed last night. I've asked to be referred to a dietician as I also have type 2 diabetes.

[Hidden]

Hi

I hope you go on well at hospital tomorrow. I saw my consultant last Thursday. Told him I can hardly eat cos it's so painful, lost a stone in a week!!! He said my liver is very slightly smaller due to weight loss but it is too fast. Bike is flowing back into stomach. My oesophagus is now very sore, it's not reflux as I had an operation for that and I know what that feels like. I'm wondering whether I should go and see my GP as I've lost another few pounds since Thursday!! I know I needed to lose weight but not like this !! Love and hugs Lynne xxxx

[GrandmaDylan]

Where is your pain? I don't have liver pain (just about the only place I don't have pain) the weight loss does sound worrying even if you need to lose weight. In july I had a gastroscopy and colonoscopy which both came back normal and I was discharged even though they hadn't found the source of the bleeding. The doctor I saw privately referred me for a CT scan and after seeing a resolving blockage in the small bowel referred me for a capsule endoscopy which showed 'a very angry,bleeding ulcer in the duodenum' I now have to have another gastroscopy done by a consultant on 6th Dec. I'm a bit concerned that repeat endoscopies can damage the oesophagus. Last time I was at the hospital I was chatting to a woman who had had repeat gastroscopies and now has to have her oesophagus stretched every few weeks. The same poor woman had also had a perforated bowel after a colonoscopy. I have to take a stronger ppi now as the pain goes up into my collar bones and jaw. Take care. Deb

[Hidden]

Today is Wednesday! Good luck at hospital today Debs. Sounds though that there is a “bit to run” for you, i.e. no quick answers 😢

Miles