Hepatic encephalopathy : Hi everyone. I... - British Liver Trust

British Liver Trust

27,478 members13,875 posts

Hepatic encephalopathy

Montys profile image

Hi everyone. I'm pretty sure I've been going through a bout of HE.

My brain has been real foggy. Nothing has felt real. I have intermittent phases of a real pull to sleep out of the blue.

Thoroughly constipated . Lactulose not working. 😰

60 Replies

Where's Laura 🤔🤝

laura53923 profile image
laura53923 in reply to Montys

I'm here 😀

There are some tests that your GP can run which should highlight if you have HE or not. Firstly there is the West Haven Score: who.int/hepatitis/publicati...

Depending upon the assessment, a GP should tell a person that they shouldn't drive. They will then be duty bound to inform the DVLA.

Some tests can be used, but not many GP’s are aware of these. There is a rather accurate, but simple test that is used over in Europe and some parts of the USA. This is called the “Animal Naming Test” (this article is in German, but by opening it in Google Chrome and selecting translate this page in English it will help: medical-tribune.de/medizin-...

It is important that HE is diagnosed as soon as possible, this is on order to prevent further, permanent/long-term brain damage.

I hope this is of some help.

Richard

Montys profile image
Montys in reply to Richard-Allen

Thanks for replying. If I feel I'm getting worse, do I ring 111 ??

Is your vision off too? Feel exactly the same bit shaky as well. Having colonoscopy on Wednesday? Wondering if it’s nerves.

Montys profile image
Montys in reply to Worrysome

I have noticed flashes in my eyes lately. Constant headache. Time means nothing. My days and nights have swapped places but last night I haven't slept at all and I'm trying to make myself tired to get some sleep right now. It's unreal.

Worrysome profile image
Worrysome in reply to Montys

It’s very scary, seeing how I go. My vision is blurry. It’s the worst I’ve felt today, I am worried about colonoscopy on Wednesday so wondering if it’s that.

Is your vision off too?

Montys profile image
Montys in reply to Worrysome

No.

Worrysome profile image
Worrysome in reply to Montys

Sorry to rep at question, if you have diagnosed cirrhosis, I would seek medical advice. They will just tell me it’s my anxiety.

I believe you can take more Lactulose if needed.

Montys profile image
Montys in reply to Worrysome

The stuff makes me sick and gives me bad stomach cramps. I'm taking macrogol right now. But no bowel movements. Already 5th glass since last night 😩

Worrysome profile image
Worrysome in reply to Montys

It is awful stuff but if you get medical attention they can give you tablets that I believe work really well to get rid of toxins.

in reply to Worrysome

That would need to advised by a doctor at an agreed maximum level if needed.

So sorry to hear that. I was prescribed rifaxamin for HE but really struggled with lactulose. You need to speak to your GP of your hospital consultant. I had a CT of my head done too. I was fortunate that mine was very mild. If it is causing you to be very poorly then get some advice straight away🙏

I gave up my car too which was very difficult.

Stay safe🙏💜

Montys profile image
Montys in reply to Lam1e

I gave up my car years ago. Before I got cirrhosis, I lost my judgment of distances and my mind wandered . I had a couple of close calls, especially one where I was literally waiting for a car to go straight into my drivers door on a dual carriage way, but the guy managed to just swerve and miss me.I tried to get on to the dual carriage way from the hard shoulder from a standing start.

To name but one incident!!

Montys profile image
Montys in reply to Montys

Before I was diagnosed. Had cirrhosis but I didn't know 🙄

laura53923 profile image
laura53923 in reply to Montys

Hard going Monty. Look after yourself x

Montys profile image
Montys in reply to laura53923

Thanks . Will get back soon. You take care too 🤝🤝

Montys profile image
Montys in reply to laura53923

Hi Laura. Hope you're ok. First time I ever seen a troll the other day..or is that trollope...think its the depression and constipation at the moment. Listening to Elvis always cheers me up !!🤴

Montys profile image
Montys in reply to laura53923

Why do I feel almost high one minute and then have this incredible urge to sleep for a bit and then repeat?? Been a few days now??

laura53923 profile image
laura53923 in reply to Montys

Hi Monty. Sorry for delay in replying. I think as you suggested it may be an idea to call 111 for advice about your symptoms. Yes l am fine thankyou... x

Montys profile image
Montys in reply to laura53923

Good morning Laura. I have only just managed to clear my bowels. Took most of the night!! Hopefully my head will clear now. Have a beautiful Bank Holiday!! 🤝🤝

laura53923 profile image
laura53923 in reply to Montys

Well done !! You too

Whitethorn profile image
Whitethorn in reply to Montys

Sounds like you need a anemia to get rid of toxins

Montys profile image
Montys in reply to Whitethorn

Thank you 👍

Sorry to hear things are so tough for you Montys.

Montys profile image
Montys in reply to Phil1234

Hey Phil. I stopped on this forum for a while because not feeling great . I hope you are well. Thank you for your concern 🤝🤝

Montys, I had/have the same and keep wondering if its the start of HE.But a lot if not all of it is probably depression.

Lockdown has not helped, this mad world is enough to give us all brain fog!

As for tiredness, the less I do the less I want to do so just realising I need to get back out and live life.

Use it or lose it☺️

Montys profile image
Montys in reply to Roy1955

Emm.......will keep that in mind...the insomnia is driving me crazy too!!🥸

Roy1955 profile image
Roy1955 in reply to Montys

Just read your older posts.Depression is a bugger.

Have you spoke to your Dr about it?

Montys profile image
Montys in reply to Roy1955

About the depression?? Yup. Antidepressants, counselling...was a joke 🥸. Not about the HE. But the fact I'm writing this makes me think that's not the issue (HE) . Right now ,real bad bloating and constipation 😩

Trust10 profile image
Trust10Administrator

Hi Montys, although no one can diagnose you, it certainly sounds like your symptoms need discussed with your GP. I would encourage you to contact them to discuss how you are feeling. One suggestion is to write down all your symptoms so you don't get confused/lose track. I hope you feel better soon,Trust10.

Montys profile image
Montys in reply to Trust10

Thank you. It's been a horrendous night. No sleep and finally just cleared my bowels after 3 days. Painful stomach and backside now!! My doctor is closed today. Will contact tomorrow. (He will just send me to A and E 🤨. Thank you so much to take the time to respond. Means a lot 🙏

Kji378 profile image
Kji378 in reply to Montys

Hello Monty 👋

If the Lactulose has severe effects, I know that one too ☹, so ask GP, about "Docusate".

I take twice a day, less harsh, but works for me personally. It softens rather the harshness of Lactulose (ouch)... although Lactulose is the best to get rid of the toxins causing HE.

But check with your Consultant or GP!

Take good care 😊

Kji378 profile image
Kji378 in reply to Kji378

Ps I am prescribed Rifaximin also. I hope you get it sorted, 🙏 😊

Montys profile image
Montys in reply to Kji378

Hi. I have lactulose, magrocol, bisacodyl 5mg tablets, glycerin suppositories and bisacodyl suppositories. Isn't one of them docusate?? Sure I've seen that on my prescription list?? Right now, after last night's efforts to clear myself, was painful and exhausting!! Doesn't matter what I eat, I constipate. Even with my chicken tikka subway salad!! So today will be a very quiet, easy going day. Enjoying the empty stomach...sad man me..🙃

Kji378 profile image
Kji378 in reply to Montys

Oh cripes ...that's probably half the pharmacy, you poor chap.

"Docusate sodium 100mg" goes under the name of "Dioctyl " looks like a tiny little lemon Sherbet sweet, but half yellow half white capsule like a kinder egg, (obviously not that big - that would be a mighty task!)

It has liquid inside, easy to swallow, not grainy like the coatings of some tablets.

Might be worth asking about. Just a thought.

Aww it's rotten isn't it. All the best 👍 😊

Sorry to read your issues Monty - you sound very like me! I have HE and cirrhosis due to Budd Chiarri. So feel your pain with the lack of sleep and bowel issues. I'm about to have transplant assessment as the HE keeps happening - three times in two months and once was after they'd reduced blood flow through my stent to try to deal with toxin issues. I take Rifaxim, Laxido and Duclolax every day to try to ensure I get toxins out. I take laxido rather than Lactulose as it was really hard to deal with in terms of bloating.

When I get HE, I shake terribly, have no idea where I am or how to do things: I can't work a phone, work out how to pick things up, like a cup to drink tea, no sense of balance and talk nonsense which is hard for my kids to watch. I have the added pleasure of blood disorder and when I go a bit mad I have to try to remember to keep on top of the chemo and blood thinners I need to take for that!! I don't think I'm bad enough to need a transplant but the liver unit in London assessed my notes and feel I need to be reviewed. I reckon I'll just get yet more drugs to try to solve it first. We shall see.

Montys profile image
Montys in reply to Loobylou72

Hi. Seeing your name had made me smile 😃

I had three acute episodes of encephalopathy requiring hospitalisation. Shortly before transplant I was told that I was experiencing background encephalopathy which caused a loss of higher cognitive function. This meant that on a day to day basis I could present fine to most people but in reality could not process information. The hepatologist asked me to name as many animals as I could in one minute. I could only name 6. I hadn’t the ability to process her request. I had lost my sharpness and was dulled. I only wanted to sleep, at all times. Talk to your Doctors as this was a warning that my condition was worsening. Encephalopathy can be both frightening and dangerous. Good luck xx

Loobylou72 profile image
Loobylou72 in reply to Roots57

Wow you sound like me Roots57 as I am finding keeping my job tough as I forget things, lose track mid flow and find even the simplest thing take me three times longer than normal. I can't work out what to do about it as need to work but clearly the level I work at currently is too much!! How do you get a new job, while admitting you have terrible memory function? Ugh!

Roots57 profile image
Roots57 in reply to Loobylou72

Loobyloo are you on transplant list? I am a social worker and had great difficulty staying on task. I went sick initially but because I was covered by Disability Discrimination I returned briefly with lighter tasks. As soon as I was transplanted I got my brain function fully back. Personality and presentation all returned and I’m back working. Just be careful with encephalopathy as I was told to go to hospital if I was concerned about my functioning or others were. There can be dire consequences if you ignore the signs so follow ALL medical advice and report ALL your concerns. I was relieved to know I had background encephalopathy at all times because I was blaming my age and I couldn’t see any light at end of tunnel- there is always light!!!

Loobylou72 profile image
Loobylou72 in reply to Roots57

No got assessment for it on Sept 13-15 at Royal Free. I had EEG and CT and it confirmed I had HE issues and then I had two bouts one of which I want to A&E with and then the other that I spoke to consultant and it led to me being called for assessment. . I love that you feel normal again as I just want to be able to do my job and function effectively! I am Head of Comms in IT company and deflecting lots of my work to co-workers as I can't cope with it! I do contract work and not holding it together at all in this job, but got amazing boss who sees my health as more important. I worry about how/if I'll get another job though I have to admit!

Roots57 profile image
Roots57 in reply to Loobylou72

Are you on list?

Loobylou72 profile image
Loobylou72 in reply to Roots57

No just being looked as potentially going on it due to symptoms evolving and HE getting worse

Roots57 profile image
Roots57 in reply to Loobylou72

That’s how I went on list. The encephalopathy worsened. Honestly, you will be grand. Stay positive xx

Montys profile image
Montys in reply to Roots57

Thanks

Readlots profile image
Readlots in reply to Loobylou72

Hi Loobylou, having a supportive boss is really helpful. I believe that, like Roots, you’ll qualify as disabled under The Equality Act if your illness has lasted or is likely to last more than 12 months. This gives you protection and requires your employer to make reasonable adjustments for you. You could request an occupational health referral and see if they can recommend some adjustments for you. You don’t have to be off sick to get a referral. Your boss can request one for you through HR, although you may decide that you need to take time off. It’s tricky - if work makes you feel better, stick at it for as long as possible. If it doesnt, then take time off sick. Concentrate on getting well before you worry about the next job. Once you’re better you’ll find more work, I’m sure.

Loobylou72 profile image
Loobylou72 in reply to Readlots

It's more being a contractor that worries me. I am not sure what rights I have with the employer

Trust1 profile image
Trust1Administrator in reply to Loobylou72

Have a look at the ACAS website acas.org.uk/

Montys profile image
Montys in reply to Trust1

Thank you. It's people like you that make the world a better place 💞

Montys profile image
Montys in reply to Montys

I'm not even sure who I'm replying to or which messages are for me..🤨

laura53923 profile image
laura53923 in reply to Montys

🤣 it really doesn't matter Montys ......you are reading the replies and receiving good info and that's whats important x

Readlots profile image
Readlots in reply to Loobylou72

Trust one is spot on - look at the Acas website. They also have a telephone helpline. You’re right, being self employed as acontractor does change your rights. A lot will depend on the contract you have with them. Do you have any insurance policies that might help?

TBSW profile image
TBSW in reply to Loobylou72

Hi I worked for the NHS whilst I was ill with HE. They were great and helped me reduce my hours and responsibilities, but unfortunately in the end the HE got so bad it was unsafe for me to be at work. I was subsequently medically retired, three months before I had my transplant. Unfortunately over a year later I'm still not able to work, but you can claim your pension early if you have one, plus receive ESA benefits, which isn't means tested.

I also consume extra lactulose as well as hard boiled eggs seems to work

Hi, has anyone else noticed a change in your behaviour, as it was my colleagues who first noticed my facial tick and loss of concentration. This was eventually diagnosed as HE, but this was after I'd had a barrage of tests to see if I'd had a stroke or MS. It was only when I'd almost driven the wrong way down a dual carriageway, and I mentioned it my heplogist, did he perform an EEG which confirmed HE. Good luck

Loobylou72 profile image
Loobylou72 in reply to TBSW

I just about manage to hide mine, as my memory is awful so find I lose track and forget what I want to say mid sentence. Harder to hide is my shaking hand, which can get terrible or when I can't work out how to lift a cup etc. It has helped being in isolation as no-one has seen me at my worst! I hae had an EEG and CT that confirmed I have HE and now I am being assessed for a transplant. I don't think I am that bad but I guess they want people who are well physically as it's a long operation.

TBSW profile image
TBSW in reply to Loobylou72

Unfortunately your probably worse than you think. I thought I was fine, even right up until just before my transplant. Whilst I was in hospital awaiting my transplant I would post videos on Facebook letting my friends know how I was doing. Looking back at those videos now, it looks like I'm on a rollercoaster with the amount of shaking that was going on. I think for H&S sake you need to inform your employer's as your work may begin to suffer as you degenerate. I hope your employer is as supportive as mine xx

You may also like...