Awful symptoms, not sure if liver related.

[mattymoo33]

Hi all. I've had new symptoms for about a week. Nausea, muscle weakness, shaking, forgetfulness, constant tiredness, no concentration. I also had mild episode of encephalopathy on Christmas Day, couldn't cook dinner, can't remember going to bed about 8 and waking at 0330 insisting we had to get up. Hubby wanted me to go to a&e. Sorry post id do long, but wander if any one else recognises symptoms? Just took 10 mins to type that! Steph xx

[Chris-harris]

Sounds to me like HE, I would speak to GP as soon as you can. I assume you are taking lactulose, if not I suspect you will be given that and maybe Rifaximin, I have had similar bouts in the past as will have a lot on this forum.

[Elric1 in reply to Chris-harris]

Hello 👋 Can you tell me are you ok now and has the Rifaximin done the trick ?

[Chris-harris in reply to Elric1]

Touch wood I am ok, didn't take Rifaximin for long to be honest but it did help. HE is a horrible thing and can imact all sorts, I had trouble walking straight, sluring words, concentration, forgetfulness etc etc, DR put it down to Anxeity so not sure but seemed to tick all the HE boxes

[Elric1 in reply to Chris-harris]

Cheers Chris

[Hidden]

Hi Steph,

We are sorry to read that you are feeling so unwell. Based on the information that you have provided, we would suggest that you see your own doctor ASAP for assessment of all your symptoms.

If you cannot get to see your own doctor, you may want to call NHS111

nhs.uk/using-the-nhs/nhs-se...

or attend A&E letting them know about your liver diagnosis.

Please do keep us posted and take care

Trust1

[ThreeSmiles]

Oh dear Steph - you need to go to the doctors - seriously. Any indications of HE need to be investigated as soon as reasonably possible. If you had a small episode at Christmas and now again you’re struggling then I would get to the doctors.

HE is not the joke I used to think it was before I even knew the phrase/condition. I just laughed a bit - I mean it cleared away by itself - didn’t it - hmm yes but only sometimes - other times it was a Hospital jobbie.

I also didn’t realise that HE can damage your brain..I have no medical expertise but I have lots of HE experience and still suffer the after effects - primarily memory loss.

Chris is right as a minimum you may/should be on lactulose I expect - doctor will confirm.

Look at this forum leaflets on liver disease - follow links under Pinned Posts.

Good luck in getting it looked at - and soon!

Miles

[alfredthegreat]

Hi Steph.

Sorry to hear that you are having it rough at the moment.

I recognise those symptoms only too well and I agree with the others that have posted,

get yourself checked out ASAP.

In the meantime drink plenty of water to help flush toxins out of your system.

Let us know how you go on.

Hope you're feeling much better soon.

(((((((virtual hug)))))))

Alf.

[Braveheart65]

Me to a t! Get medical opinion and go from there. In meantime, try not to stress about it. Take care!

[mattymoo33 in reply to Braveheart65]

Hi. Just been to get checked. I did have a serious episode of HE a year ago,, so doc prescribed Movicol as I struggle with constipation despite taking Sodium Docusate. My bloods are good, so he said it was HE. Thank you so much for your time and helpful advice. Hope you're all as well as. Love Steph xx

[ThreeSmiles in reply to mattymoo33]

Good stuff Steph 👍. Has he given you a target for the number of toilet visits per day (sorry to lower the tone!). I was advised 3 to 4....yoiks!

[briccolone in reply to ThreeSmiles]

hi, it was this thread that prompted me to get a bit pro-active and try out lactulose in case I get diagnosed with something nasty.. I'm getting full liver panel tests done tomorrow so will know soon enough what's what. I have to say I've been feeling a lot better with lactulose and also strangely since Saturday stool colour has become more normal-interesting. Anyway early days as I've had a few false dawns since I stopped drinking back in mid-october. I actually feel almost normal-we'll see. all the best

[ThreeSmiles in reply to briccolone]

Let’s hope it helps! 🤞🤞 for you!

[briccolone in reply to ThreeSmiles]

thanks Miles- as lactulose can be purchased without prescription I thought I 'd try it-usual side effects in the first 2 days which have disappeared so no major issue if it turns out I need to stick with it..

[alfredthegreat in reply to mattymoo33]

Glad you've been seen steph. Hope all is good very quickly

[Braveheart65 in reply to mattymoo33]

Well done you! Great news x

[mattymoo33 in reply to mattymoo33]

Hi all. Another rubbish night night with shocking confusion, sleepless, driving hubby bonkers, poor chap! can't take another night like that! don't know what to do next 😥

[Hidden in reply to mattymoo33]

Sorry to read this Steph, can you get seen by a doctor today? Your symptoms really do need medical assessment... Trust1

[alfredthegreat in reply to mattymoo33]

Hi Steph, Have you had your urine checked for infection. It's just a thought because that can cause confusion too and even when it's showing no other obvious symptoms.

If it's HE from liver problems though it may take some time to clear.

You need to go back to your GP though if you think things are getting worse.

When is your next clinic?

I've got an interim one in feb, I have a feeling that you were put on to 6 monthly.

[Hidden]

So sorry to read this Steph. Wishing you well and please see the doctor urgently. We often don’t know ourselves it’s urgent to get medical aid when our brains are affected like we’d know right off if it was chest pain, blood loss, paralysis, broken bones etc because of the altered thinking that comes with it 😘

[Hidden in reply to Hidden]

O. You did already! 😃 I hope you find movical better than s docusate. I do.

[Elric1]

Yes got same trying to get some Rifaximin at the moment seem slow to help extremely frustrating

[mattymoo33]

Yes, very frustrating to fee so poorly and seeing no end to it. Again, sorry to keep moaning, I know you all have your own struggles xx

[mattymoo33]

You're all a great help. xx

[Alley27]

Hi moo, I have been having some sort of similar episodes..tiredness weakness sleepiness dizziness nausea and slurred speech on the odd occasion...I took lactulose on advice of pharmacist because I couldn't get am appointment with my gp. Lactulose cleared it up.

I have been trying to tell my gp that something is not right and mentioned HE, but no one is listening. I am going to try and get an appointment with my hepatolagist and explain new symptoms and possibly of HE and when he shouts me down I will simply ask him to explain why lactulose clears it up...

Take care xx

[Thistle09 in reply to Alley27]

Lactulose clears it up because Lactulose cleans you out. Never allow yourself to become constipated. Depending on how much you eat, you should have at least one large BM every single day. If everything is working correctly, and you have several meals per day, you should have BMs several times a day.

I DO NOT understand this fixation with Rifaximin to cure HE. GOOD GRIEF! Its primary use is to cure E.coli, sometimes referred to as "traveler's diarrhea." Why would anyone want to clog themselves up? I have lived and worked in a number of 3rd world countries. E.coli and other such temporary maladies come with the territory. Aside from sometimes taking amoxicillin, I have almost always preferred to let the diarrhea run its course (joke, hahaha). Don't let an infection inhabit your body for any longer than it takes to get it all out. Grrrrr.

[mattymoo33]

It's always good to check. If it becomes severe eg. last night in a&e, didn't know the date give and had to ask someone how my glasses worked. Good luck getting an appointment, if nothing else than to ease your worries. 🤗 xx

[ThreeSmiles in reply to mattymoo33]

Where are you now Steph?

[mattymoo33 in reply to ThreeSmiles]

Hi Miles. Admitted to hospital yesterday. Having an enema when nurse free😟

[ThreeSmiles in reply to mattymoo33]

Oh Steph - good place to be in the circumstances! But not waiting for the fun time enema 👎😕.

Hope it goes OK. Please let us know how you get on - not so much about the enema (!) but more generally!

Ta

Miles

[mattymoo33 in reply to ThreeSmiles]

Hiya Miles. Feeling better and slept. Going home with copious laxatives. Thanks so much for your help and wishes. 😊

[ThreeSmiles in reply to mattymoo33]

That’s good stuff Steph 👍. Laxatives rule OK!! Well better that than self administered enemas 😀.

Hope you continue to be OKish...

Miles

[Bootandall in reply to mattymoo33]

Hi Steph, are you in hospital or at home now? I regularly take lactulose and rifaximin or l get the same symptoms. Left untreated HE can lead to brain damage and coma or worse.

The doctor explained to us that if your hands shake when you hold them out, that is an emergency and needs to be checked out right away!

The lactulose causes elimination, and will reduce built up ammonia in the blood, rifaximin is a poorly absorbed antibiotic that works in the gut and is thought to reduce ammonia production by eliminating ammonia-producing bacteria.

Hope you're feeling better!

[mattymoo33 in reply to Bootandall]

Thanks boot. Admitted to hospital yesterday. Going to have an enema, so hope that will sort me out 😟xx

[Hidden in reply to mattymoo33]

Hope you start to feel better soon Steph...Trust1

[mattymoo33 in reply to Hidden]

Thanks Trust 1. Feeling 100 percent better than Wednesday. It's reassuring you're there keeping an eye on us 😊

[alfredthegreat in reply to mattymoo33]

Great news

[mattymoo33 in reply to alfredthegreat]

Thanks Alf. So glad I listened yours and others who kindly posted helpful comments.

Best wishes to you and your lovely Anne, hope you have a good weekend xx😊

[alfredthegreat in reply to mattymoo33]

Thanks Steph, and you. Take it easy and recharge those batteries x

[Hidden in reply to mattymoo33]

[Hidden]

Hi Matty

Sorry for late message as I'm sure some cyberspace geek is playing with my post!

Do hope you've now recovered from your not so nice HE episode ?

Thinking of you love Trish x

[mattymoo33 in reply to Hidden]

Trish, just seen your post. Thanks honey HE is a b***er! Being worked up for t/p list... again. Thought this would be a better year ☹️

How are you sweetie? 💐

[Hidden in reply to mattymoo33]

Hi Matty

Thanks for your message and I'm here for you on those tough days.

Love Trish x

[mattymoo33 in reply to Hidden]

Thanks lovely, same back atcha 🥰xx

[Sqwarks]

What’s HE think I may have it, soz bit dumb??

[mattymoo33 in reply to Sqwarks]

Hiya. HE is hepatic encephalopathy. It has (I think) 3 stages. My episodes usually start with forgetfulness, sleeplessness, agitation, confusion and slurred speech. It is caused by raised ammonia levels, usually because of constipation. If left untreated, can lead to more serious complications and coma. I'm speaking from my own experience, not textbook. Hope that's helpful Sqwarks. 🤯

[Sqwarks]

Thanks

[Sqwarks]

Yea sounds like me, I have lactulose but isn’t helping constipation, tried senna no good, I am getting concerned I’m going nuts, went out for food, got back my daughter asked what I had didn’t remember? I’ve got a bloody list of not remembering, my address??

Anyway I’m wondering what serious complications you had, if you mind.

I’m thinking I will get to the stage I won’t know what’s going on at all, thanks for reading 🙃

[mattymoo33 in reply to Sqwarks]

Hi Sqwarks. I don't really know how to help, except using lactulose. I had to take 60ml at least 3 times a day. A blood test to check ammonia levels. If you're concerned you have HE you shouldn't drive, or be on your own. Call your GP, 111, or helpline number on the forum for advice.

I got very argumentative and was convinced I was fine, but I wasn't.

Take care. 🤗

[Thistle09 in reply to Sqwarks]

Sqwarks, have you tried drinking prune juice? I hate the taste, but it works. To be effective, senna should be taken every day, sort of like a vitamin. I'm really surprised that Lactulose hasn't helped you. If taken as directed, you should get relief in an hour or so, at most.

I am not a fan of rifaximin. After all, it is an antibiotic. Antibiotics are not meant to be used as a long-term solution. In my opinion, it has potential to do more harm than good. If you develop another "infection," it is possible that you will need a much stronger antibiotic (one that could do more harm to your liver) because you have built up a resistance to the milder antibiotics.

[Sqwarks in reply to Thistle09]

Hiya, I’m so pleased you said that one, I didn’t think of it even though I’ve been forcing Prunes down my throat ugh, I’ve got senna, in the morning I’m heading to the shops on a juice mission😁 thanks for the advice was wondering what to try next,panicking.

Sqwarks

[Thistle09 in reply to Sqwarks]

Sqwarks, it occurs to me that you may not be getting enough fiber. Steak and potatoes, bangers and mash, will not only put on the weight, they will clog up your digestion for days after. If you prefer juice to the fiber of fresh fruit, or even more fiber in dried fruit, go for it! Anything that gets your intestines moving things along!

[Sqwarks in reply to Thistle09]

Ha yea very funny, I would love a steak thou or a big fat pork sausage, and put on weight cos ain’t fat arses in fashion,

Unfortunately not or cream cakes, salted crisps,( drooling) I’ve had that much fruit veg protein fibre etc it’s boring me to death,not my liver!

I’m now going to bed to dream about chocolate 🍫 it’s worse than giving up the booze, got over that one.