Anger management?

[Chelle_]

So someone be so kind as to explain to me 'personality changes' that you get with HE. Would this include shouting at people inappropriately and unnecessarily? Or getting annoyed easily? I'm dizzy today and have shouted at a colleague completely in called for. I don't particularly like him but he didn't deserve me shouting! I looked at my keyboard yesterday and through my it was upside down, my head at times is proper spinning and I'm not sleeping well....thoughts? Am I just being a bitch because I don't like him?

[dezzza33]

Hi Chelle only had it once , it didn't make me aggressive ,just disoriented stayed in hospital for five days ,i was doing wierd things bought some remote phones we couldn't find batteries i had put them in fridge ! Del

[Chelle_ in reply to dezzza33]

Oh Del! I forget my words sometimes and don't remember that I have done stuff, like conversations or emails....I made my other half a coffee the other day - he has never drunk a hot drink in all the time I have been with him and that's about 7 years!!

I looked at my keyboard yesterday too and thought it was upside down and couldn't work out how I could use a keyboard upside down....

Today I am mainly dizzy and frustrated, dizzy if I sit, if I move, then nothing then all of a sudden its like the world is moving around me...not a nice feeling at all.

How's the hospital? You climbing the walls yet? You in Kings? x

[Millie09 in reply to Chelle_]

hi chelle .I haven't had this myself as yet but a friend of mine who has end stage has it .I met makes her feel very tired and forgetfulness at times .she mislaid her car keys , when she responds to my messages you can tell as some times they don't make much sense to me .I get angry myself at times but I put that down to my lack of sleep as I am up till 5 am At least .and now I have carpel tunnel syndrome so waiting to be seen by neurologist .have a word with your doctor or liver team.hopr your keeping ok though. Linda x

[Chelle_ in reply to Millie09]

Linda, I remember when I was first diagnosed with Liver disease, I was a horrible person, thought I was going through the menopause, kept snapping at people without meaning to, being nasty but I couldn't help it.

I'm up at 5am every morning, well Monday to Friday but that's because I work full time. My other half says I don't make much sense a lot of the time. lol especially with texts!

I hope everything goes ok when you meet with the neurologist!! x

[Millie09 in reply to Chelle_]

we're you .I've had it 9yrs now yet I can still get snappy then say something I shouldn't and regret it later .oh how I wished I could go to sleep and wake at 5am like a ' normal person " so to speak .I'm now restricted by this flipping tingling as even holding a mobile aggravates it .it's like I have ants digging away lol same as in my toes .drives me crazy .oh I bet I will have another 3 months wait like I have with the hepetologist so it's just carry on as much as we can . Haha .well your not on your own there .my texts are awful !! funny at the time but I have no idea where the words come from .good job we can still laugh though ! hope you get things sorted Chell .not nice is it when you are unsure .take care hun and thank you

xx

[Chelle_ in reply to Millie09]

Lol, Linda, I don't sleep, well I get about 3-4 hours if I am, lucky...the drs gave me something for the sleeping, but because I drive about 600 miles a week I won't take them during the week only at weekends.

Doesn't sound like fun, Carpal Tunnel, my friend had it but because she was over weight, putting excess pressure on her wrists, she's now lost a lot of weight and the second hand which she was due to have operated is now back to normal which is excellent.

Laughing as I have been told to day is good for the soul!! x

[Millie09 in reply to Chelle_]

OMG .how do you function ?, good God I would be fast asleep half way thru the day lol. I would not accept sleeping tablets as I am on enough Meds as it is but at least that's good you can have a nice sleep over the weekend.oh has your friend got that then .Yes my dr said yesterday that it's common in people who have weight issues which I don't so maybe it's coming from. elsewhere that's why I have to have neurological tests done as something isn't right at all .my daughter has carpel tunnel and arthritis and she is only 37 .glad to hear your friend has Improved .it's annoying more than anything .it's know on the Saturday just gone my left hand turned blue so I took a photo to show my doctor.so we will have to see what happens . 😊xx

[RodeoJoe in reply to dezzza33]

I put my mobile in the freezer once??? Couldn't find it for about a week. But yes personality change is common. I believe its do do with the toxins in the blood. I suffered quite badly with paranoia. It didn't help that I was working at a government military science park. I can't tell you what I was thinking but one day in hospital I got my other half to bring in a bunch of USB keys which I destroyed, then begged her to drive over my IPad.

[Chelle_ in reply to RodeoJoe]

Oh no, that must have been awful. My mum keeps saying my personality is changing, slightly but obviously she'll notice more than everyone else. I don't take lactulose you see, I know I should but it makes me feel poorly! x

[Emmabskin in reply to Chelle_]

I used to be prescribed lactulose but all it did for me was make me very very windy. It's not really meant for people with a real problem, I think. If you ask for Senna plus sachets of Laxido. The Laxido gets you moving after a few sachets and the senna just keeps you on an even keel til something tips the balance again then it's back to taking both. If you are very bunged up to start with it's best to stay close to the loo for a day or so! It amazes me where it all comes from lol. Hope it works as well for you as it has for me, it can get so painful. I used not to go for weeks at a time. Good luck xx

[Chelle_ in reply to Emmabskin]

When I was first diagnosed I was on Sennacot, Movicol and Lactulose and now it's just lactulose, not for movements but to remove the toxins out of my body. x

[Emmabskin in reply to Chelle_]

Ah ok. Thanks, ignore my last post.

[jojokarak]

Hi chelle before H.E my friends used to say I was so chilled out they wasn't sure if I was asleep or not lol. And then I got it and my friends nicknamed me taz I was snappy, moody and basically angry. They wouldn't go out with me at points as I would lose it with strangers for what because they were in my way lol. I argued with everyone and one of my friends said she only forgave me because she knew what I was like before, so answer is yes lol. Is there no way possible you can cut your hours down as you do seem to do a lot and I think you may need to start concentrating on yourself a little more and friends will understand more the changes but are work and colleagues going to be as understanding x

[Chelle_ in reply to jojokarak]

I know your right, I said at Christmas I was going to discuss with my boss about working from home Mondays and Fridays and then being in the office which ever one that is 3 days a week...I know they are all for me not pushing myself and putting myself first, so I know they will support me, it's just I want to give 100% and not give into my illness.

I lost my career in the Navy because of all of this and I am just starting to find a place I'm happy with....I know it's not giving up and it's more important that I am well....

Oh I don't know! Making the best decision for me is easy...it's the actual making it happen that's a bit harder.

If I were the one offering advice I would give the same as you...My friends are the only ones that keep me sane...sometimes they are too nice though and I have to walk away lol

I hope your feeling better and a bit more positive xx

[jojokarak in reply to Chelle_]

I feeling much better because I took control x. And I understand what your saying completely but also whilst you have the capacity to make decisions for yourself do it as last 2 years before my transplant I really wasn't capable of any decision making to the point I signed my friend up to my bank account and also had to give my husband and father power of attorney more so for hospital as I would of probably refused everything they offered but knew they would make the right decisions for my well being. It's so hard to say I need a break and even signing them things over was hardest thing ever but it just meant I could fight harder to keep me x

[Chelle_ in reply to jojokarak]

You made brave decisions! And talk so much sense. My other half is back from Belgium for the weekend tomorrow, I'll talk to him and see what I can sort out...He will agree with you and will be pleased I am thinking of me more. Thank you x

[jojokarak in reply to Chelle_]

Glad to hear it hunni x and your probably first person in a long time who has said I talking sense lol 😁

[RodeoJoe in reply to jojokarak]

I know what you mean. I was self employed for the majority of my career. I was working until about 6 months before transplant and managing my finances, HMRC, expenses etc became hell. I threw it all in at the end, just couldn't cope. I had to make an arrangement with companies house that I just stopped there and then without the formalities. Don't know to this day if I owed them or they owed me. I was terrified of getting into a mess with HMRC and that spiralling into something else I couldn't cope with.

[Helenleeson]

When my dad had HE his personality changed. He was very annoyed but also incredibly sleepy. His balance went, he couldn't hold a cup of tea, he tripped over his feet if walking. His handwriting changed. He didn't want to even talk to me which was really out of character. It was quite a battle to get the help he needed cause he was adamant nothing was wrong! Scary stuff.

[Chelle_ in reply to Helenleeson]

Oh how awful, I hope that things are better now and that they have either calmed down or is well and truly on the road to recovery!! I didn't realise that there were so many aspects of HE....that's what worries me.

[Will5]

Further to the post, Chelle- All, In my opinion HE is the worst part of this disease. The lack of sleep, sleep reversal, overall fatigue are difficult to deal with, but the mental/ emotional/ personality changes can be debilitating from a professional/ work standpoint and downright embarrassing from a personal standpoint. If your not familiar,HE can be graded on a scale, it's called the West Haven scale, where symptoms are graded from minimal( memory loss, confusion) to more severe ( personality changes, worsening confusion, forgetfulness, irritability, bizzare behavior, doing and saying things that are totally out of character,poor judgement, slurred speech, and slowing of motor skills which can result in tripping and falling incidents, worsening of hand writing, disorientation to time and place etc).If not familiar I would recommend to google the scale and use it as a barometer to monitor your condition, your partner, family,friends and colleagues may be able to assist as often times you may not even be aware of these changes.I know, I've experienced many of the symptoms described in previous posts, can''t comment on the menopausal similarities lol...my brother thought I had a stroke originally before diagnosis.asking the same questions within minutes of each other, repeating myself, being downright nasty,useing poor judgement,unexplainable paranoia,trouble communicating effectively, searching for words,nonsensical and slurred speech it has hit me hard as well.Also, please be careful driving as you may find your reaction times could be compromised.HE is tricky and is known to vary person to person, but removing toxins from the system could help, hence the lactulose, unfortunately a necessary evil.I hope this helps and would echo jojokarak's advice and try and put your health first.. I gather from previous posts your an independent highly motivated person, so relying on others may be tough, but in my experience fighting HE requires a team effort... Your not a bitch and I'm not always a jerk.. None of us ordered the HE as a side dish to cirrhosis it's just plain NASTY not you!!

Best of luck,

Will

[Chelle_ in reply to Will5]

Will, you have a way with words, you have made me feel better as has everyone else. I was told about the scale when I was on my educational day when I was first listed, I am dithering at Grade 1 mainly, sometimes I just slip out to a two...I know I need to take the lactulose, there's just a mental block at the moment...

I am quite an independent person and I know that frustrates a lot of my friends and family, probably a lot of ignorance of what's really going on on my part, I still at times don't believe anything is wrong with me and that the DRs have made a big mistake!

I hope your well. Thank you for your message.

Chelle

[RodeoJoe in reply to Will5]

Good point about driving Will. For 5 years before I had transplant I had a minor accident every year. My insurance is now slowly coming down as since transplant I haven't had any accidents.

I gave up driving when I got really ill of course but the accidents I had prior to transplant and the fact I've had none since tell a story.

[Emmabskin]

What does HE stand for. I recognise some of the symptoms in myself but I didn't realise there was a name for it.

[Chelle_ in reply to Emmabskin]

Hepatic encephalopathy (HE) refers to the changes in the brain that occur in patients with advanced, acute or chronic liver disease and is one of the major complications of cirrhosis. It can occur suddenly in people with acute liver failure but is more often seen in those with chronic liver disease.

[Emmabskin in reply to Chelle_]

Thank you. You say about lactulose, I assume that you do take it or constipation? It doesn't have any other use, does it? xx

[Chelle_ in reply to Emmabskin]

I don't take it for constipation. It's used to take the toxins out of your body...because toxins are passed via your liver and my liver doesn't work very well it just gives it a helping hand so to speak in removing the toxins to stop them getting around my body, into my brain and then causing sever cases of HE. Toxins on the brain can cause horrible problems as mentioned....forgetfulness, slurred speech, personality changes up to and including coma....

It's a horrible side effect of Cirrhosis and I presume other liver problems...x

[LAJ123]

Hello all,

Couldn't help noticing a couple of mentions of driving.

I now have loads of parking tickets, non of which I can remember getting. All in the hands of bailiffs now. I didn't care where I parked, it just didn't seem important. But the worst was driving past a queue of traffic wondering why they weren't moving. Then wondering why cars were on the wrong side of the road flashing at me. Hepatic encephalopathy is positively dangerous, all reason or understanding can simply vanish. Message here is, do not drive when you are prone to HE. when you have an episode, you think there is nothing wrong. In the throes of a severe episode there is absolutely no insight.

As already said in this thread, its for some, the worst aspect of liver failure. It certainly was for me. The clearness of thought was wonderful and it was like waking from a dream when I came round in intensive care, it really was that quick. A few here, have said the same thing about the amazing effect of the transplant.

We all need to be a bit understanding here, sometimes if one of us sounds a bit odd or doesn't seem to be making a lot of sense. They might have long and disjointed posts, full of grammatical and spelling mistakes. Be patient, it might just be the HE talking.

Jim

[RodeoJoe in reply to LAJ123]

See my post above about my driving accidents. And you are correct about the occasional post which appears to be a bit left field.

[Dldtx]

I don't know how you work like you do I hope you can slow down some. Of course with H.E. I try if I remember and really try hard and nobody asks a question or I don't see something shiny is to eat foods with zinc an copper like beans , lentils, pork, chocolate etc... consistency is the key. I have been attempting to control my H.E. with dieting it's not 100% and neither am I, but my hair is growing and I am losing the grey beside that also losing weight so I might still be something of a ass at times but I look better. I am retired and don't drive that often , when I do it's not far because of dizziness an my eyes hurt along with wondering what I will forget to do. Good luck to you , just curious what do you do when you can't sleep? I started listening to audiobooks in the dark I think it helps some

DlD 🇨🇱

[soleman08753]

no one behaves at their best dealing with chronic illness . as far as encephalophy that's when I know to take my xifactin when I start yelling at people... the way they drive... you're not alone Hon Take care

[Dorset123]

Hi Chelle

Only had mild HE before TP. but the dr. at Kings told me I must stop driving as soon as I said I was driving slower to allow for the HE. This was one of the hardest things.

I have just been given the OK to drive again, 3 months after op.

Re the HE, I was on Lactulose but then also Rifaxamin, which really helped.

As I understand it the lactulose acts as a stool softener & the Rifaxamin actually mops up the toxins.

Good luck with it all.