Hello everyone. Hope you are all as well as can be expected.
I had a bit of a funny turn on Saturday evening I nodded off in the chair, my husband and son said they thought I had woken up but I was very snappy which is out of character. I went upstairs, down again, up and then down on my bum. I only know all this cos my husband and son told me!!!, I have no recollection of what happened!!! My sister in law who is a nurse said go to gp on Mon a and e won't do anything cos I would have been ok by the time we got there!!! Anyway, went to drs this morning, he said it's called acute confusional state!!! Don't know what's caused it
Did a sample last week cos I had the runs which came back negative, told him it's now a clay colour. Got to have bloods and urine sample on Thursday. Watch this space!!!! Love and hugs to you all xxxx
Very confusing Lynne, When I first started to read this story, I thought to myself, Waking up snappy must be a girlie thing as my wife wakes up like that most mornings. Could this be a form of sleep walking? I bet your husbands worried as stair carpets don't come cheap and your going to need a new one at this rate. You could always get one of those child gates at the bottom of the stairs.
Joking aside, I wouldn't have thought this to be "acute confusional state" as this I see is often referred to as Delirium. I think it's fascinating though. I hope you get back to being yourself again soon hun, Please keep us posted, and don't go worrying.
Bless. xx
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Thank you so much. I did wonder whether it was he but Dr said you have to have acute liver failure for that!! When I read somewhere texts on here, you can have a mild firm so I really don't know!! I said to Dr please don't throw anything else at me now, I've got enough, thank you very much!!!lol
Hope you are ok. Thanks for support xxxx
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My husband and son said it wasn't like sleep walking, it was very strange, I was twitching about!! Lynne
You can have HE without acute liver failure. My hubby has the mild form and is treated with lactulose and rifaximin. If you have an episode of raised toxins in the blood stream you can have an episodes of HE including blackouts, personality changes, twitching can be a sign of HE. Unusual behaviours that you arn't aware of and don't recall afterwards definitely sounds like a toxin issue and an HE episode. Hope doctor checks your ammonia levels etc.
I can't remember your current state of health or whether you are under a liver specialist but this type of incident does need reporting to your specialist.
I have Nash with fibrosis, fibromyalgia, underactive thyroid, osteoporosis arthritis in the knees, spondylitis in lower back etc. I have read a lot of your posts which are very helpful, thank you. How's your husband doing? Take care. Love and hugs Lynne xxxx
Hi, Katie ~ Does your husband have recurring bouts of "acute" liver failure or does he have "chronic" liver disease? It is possible to suffer from HE with the former, but take a look at this from the BLT: "Hepatic encephalopathy is a brain disorder and 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. Hepatic encephalopathy may occur suddenly in people with acute liver failure however, the condition is more often seen in people with chronic liver disease." The original (with footnotes): britishlivertrust.org.uk/wp...
My hubby has compensated cirrhosis (chronic liver disease) - no episodes of acute liver failure (decompensation) since April 2012 which is when he was first hospitalised and diagnosed with a liver condition. He was listed for a liver transplant in 2012 but delisted after a wait of 10 months as his blood results stabilised following a partial splenic infarction and he no longer met the criteria for transplant.
It was during transplant assessment that the t/p team noticed his slowness of movement and speech, difficulty with concentration, memory & comprehension and severe sleep pattern disruption - it was they who diagnosed him with the milder presentation of HE.
The same publication you have linked to above does show that the milder presentation does exist, I know you have poo pooed this in one of my replies to another poster previously.
"HE symptoms can present at a range of stages from mild to overt (severe). Mild Symptoms of HE can be observed in nearly 70% of patients with cirrhosis. Overt HE occurs in about 30-45% of patients with cirrhosis."
My hubby is treated with Lactulose and Rifaximin and thankfully he is currently considered stable though is still under the close watch of consultants both local and at the liver transplant hospital.
Katie, dear. Not everything is about you, as a caring human being. In this instance, it's about an assertion you make/made. Many people in this forum think of you as an expert. I find that dangerous, as you have always included a caveat that you have no certifiable medical training. Yes, levels of ammonia in the blood can be tested. However, the *effect* of ammonia on a specific person is not measurable -- it's a subjective observation, based on anecdotal information.
I would give you a summary of my own experience with HE, but it's almost 5AM here and I need to get some sleep. The last part of that sentence could be double proof (aha!) that I currently suffer from HE. Hmm. Do I or don't I?
Not wishing to put petrol on the fire here, but as 90% of people with H.E. have a raised ammonia level, a simple blood test to check this is a sensible suggestion. Yes its not the only thing to be considered and its only part of getting the bigger picture, but its a useful piece of the jigsaw to have. Milder forms also do exist.
oh lynne that sounds awlful the only good if u call it that is someone witnessed it so u have info for gp hopefully these tests might show whats wrong fingers crossed your sis was right a+e would nt have done anything but personally i would have wanted tests done that day with gp but thats me good luck keep us informed please x
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Thank you. The thing is the next day was Sunday!! Our drs aren't open on a Sunday!! Xxxx
I had HE when I was first admitted to hospital and I take rifaximin for this, I did take lactulose initially but I stopped once the consultant was confident that it was no longer needed.
This will sound odd but I had trouble sleeping when I came home, I'd been in hospital for 3 months and I had pretty bad insonnia. Initially I was given a sleeping tablet to help but I wanted to take as few tablets as possible so I took some nytol - 1 tablet which is herbal based and I'm sure you are aware you can get in boots. I had severe hallucinations for 3 days, at the time i was wheelchair bound but i had imaginary conversations and moved around the room with no recollection of it. We went immediately to the Drs and they thought it was HE - to cut a long story short I had suffered a severe reaction to the nytol tablet, just google nytol and hallucinations!
I don't know if you have taken any medication or herbal remedies in addition to anything you usually take?x
I know the feeling, i think i rattle when i walk! Im ok thank you, i was at work but i had to come home i have guillan barres syndrome so my legs get in horrendous pain at times and 2 hours into work it started. Thankfully my manager understands when things like this happen - I work for the NHS so im pleased that they do understand!
I'm not bad. Did you watch the program about Birmingham QE? There was a lady on their whose liver was knackered but couldn only have a transplant if the liver she got was perfect. They put a liver in a filtering machine get all the crap out then transplanted it into the woman. My consultant is trying to get me done using that method. If not back to square one.
They had to put me on a blood filtration machine for four days to get rid of some of the fluid around my stomach &legs.
So I'm OK now except I'm constantly scared. Mother-in-Law passed away 2wks ago from a fatty liver so I have to go the funeral on Thursday.
I hope you are feeling better. Encephalopathy is a weird thing.I had to learn how to write again &remember what things are. It does go away.
High temp. Couldn't stay awake, knew what things were but couldn't verbalise them. This lasted for about 10 days then more recovery at home. Second time was on my daughters bday (I have terrible timing) I didn't tell the hospital (stupid thing to do) & they dosed me up with lots of Lactose to flush the toxins out. It just felt like flu. When I went to my appointment they put me on refaximin also.gets rid of toxins.
If you feel ill tell your doc or consultant better safe than sorry.
I phoned 999 when my hubby had an episode of h. e. It can be very dangerous if not treated in time. It's a build up of ammonia in the brain. He Was treated immediately with rectal lactose which took a few hours to take effect. And carefully monitored by doctor in a and e
Lynne I've had them a lot exactly same thing,could be HE confused as well under stress upon stress it's brain overloaded with everything at once and not sleeping that can cause a lot on top of it all .
It's frightening but thought I let you no your not on your own I've actully done worse
how are you feeling now lynn? I hope that your feeling a lot better and that this horrible episode that you cant even remember does not happen to you again. your going through so much lynn and its been going on for a long time, i know that there are always someone much worse of than you or me but that does not make your pain any less. your in my prayers dear. take good care. love grace xoxo
Thank you so much for your kind words. I haven't had another episode since, thank goodness!! Pain is still as bad, some days are worse but we have got to keep smiling haven't we?
Had face to face pip last week, just got to wait. Also, saw occupational health because I'm taking ill health retirement. My boss has been fantastic, I know I'm lucky that way.
How are you doing at the moment? Please take care. Love and hugs Lynne xxxx
WISHING YOU ALL THE VERY BEST LYNN AND I HOPE THAT YOU GET IT. I SEE YOU AS SOMEONE WHO IS ALWAYS TRYING TO HELP OTHERS WHEN THEY'R STRGGLING EVEN OFFERING TO GO AND HELP THEM IF YOU LIVE NEAR THEM. SO IM GLAD THAT YOU HAVE A FANTASTIC SUPPORT FROM YOUR FAMILY. ITS NOT OUR FAULT WHEN OTHERS DONT HAVE THE SAME SUPPORT. I JUST GOT A SUPPORT WOKER TWICE A WEEK FOR 2 HOURS AT A TIME AND ITS MADE A HUGE DIFFERENCE TO MY LIFE AS I CAN GO WEEKS AND MONTHS NOT REALLY SEEING ANYONE THAT I KNOW WELL. IT GETS VERY LONELY DAY IN AND DAY OUT. OH IM OVER THE MOON TO HAVE A NICE PERSON TO TALK TO SHE IS ONLY 30 BUT SHE IS VERY SENSIBLE. NOT LIKE I WAS. LOL. WE WERE EVEN UP HAVING A DANCE AND LAUGHING OUR HEADS OFF. THE THING IS LYNN I WAS GOING TO A PILATES CLASS AND MANAGED TO GET THERE TWICE A WEEK FOR AROUND 5 WEEKS AND THEN I JUSTS GOT ILL AGAIN.I KEEP GETTING MY HOPES UP THAT I WILL GET BACK TO MY DANCING CLASS ONE DAY, BUT AFTER SPENIND ALL THAT MONEY ON MY PILATES LESSONS I CAN KEEP IT UP AS IM NOT WELL ENOUGH BUT I CAN STILL BE HAPPY I WILL FIND SOMETHING ELSE TO DO THAT I ENJOY AND AS FAR AS IM CONCERNED MY LIFE HAS TO HAVE JOY AND PLEASUSRE IN IT AS ITS BEEN DEPRESSION PAIN AND REALLY GETTING UPSET AND LONELY SO NOW IM FOCUSING ON EVERYTHING THAT WILL HELP ME. IM DOING LITTLE BITS OF SENIORS ON UTUBE ITS GREAT I DO MY ARM WEIGHTS AND IT KEEPS MY STRONG ENOUGH TO LIFT THE BAGS SO IM HAPPY WHEN I CAN MANAGE TO LOOK AFTER MYSELF. THE BEST THING THAT HAS HAPPENED TO ME THIS YEAR IS GETTING THAT SUPPORT WORKER. ITS CHANGED MY LIFE. IV HAD A LONG LONG JOURNEY OF ILLNESS GOING BACK TO THE YEAR 2000 WHAT WITH HEP C AND CRYOGLOBULINEMAI OH GOD I WAS SO ILL THEN AND HAD PURPLE JOINTS ONMY KNEES AND HANDS. ANYWAY HAPPILY THATS ALL GONE FOR NOW. PLEASE TAKE IT EASY LYNN AND EAT GOOD FOOD AND PLENTY OF FRUIT AND VEGETABLE.HOPE YOUR EYE IS FEELING A BIT BETTER NOW TOO. LOVE GRACE XOXO
You are so kind. It must be so hard not having someone close to you to help with every day tasks. I feel very fortunate. My eye is ok, now thank you.i hope you start feeling better very soon.you are a very special lady. Where do you live? Love and hugs Lynne xxxx
HI LYNN IM IN EDINBURGH. to far away for you to come as im sure you would if i was near you. it is hard and very lonely day in and day out. things are picking up now lynne i feel much happier within, i pray that you get some relief. iv made some really good friends on here too and that has kept me going. im looking forward to the future now with the good warm weather coming in and waking up to see the sun in the morning. im enjoying my life a bit more now. all my love and prayers to you lynne god bless you dear. love grace xoxoxo
Thank you. I would definitely come to see you if you were s bit nearer, we can support each other on here, though can't we? You are very kind lady? I've got a good group of friends of which I am very thankful for, also family. And we are in s family on here, everyone is so kind and thoughtful, it really does help. Please take care. Love and hugs Lynne xxxx
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Update from a worried mom.
Abnormal Liver Test, am intensely scared.
End stage liver disease
As I said before to little to latexx
