Heatic encephalopathy : Been a... - British Liver Trust

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Heatic encephalopathy

Davideo profile image
21 Replies

Been a alcoholic for over 20 years. My sweat smells like cat pee (amonia). Is this common for HE? The flies can smell it. They keep flying towards me.I know this how they find their food. The smell of amonia is the smell of death. Have other symptoms as well stomach cramps itchy skin really smelly stools red veins on nose and really bad brain fog. Went to my gp and she booked a scan for me.Really worried been of the drink 2 weeks. Also got no patience no more. Get really angry when waiting in queues etc. Feel like my personality is changing which Is the most scary thing. Bloods are fine but my bloods were fine when I had a lung abscess (had two). Also bedding and underwear stink of this horrible smell. Been browsing this forum a lot but no one stinks of cat pee. Also get really bad twitches (mini seziures) and suffer from internal vibrations. Also one day's of drinking and I'm house bound for a week due to anixety. Really strange symptoms I know but I'm a strange person. Evertime I wake up I look at my eye balls to make sure theirs no yellow tint also constantly checking for ascites this is next I fear. Also my urine is foamy . I always thought it was excess protein but my kidneys are okay so this must be excess amonia. Would like to hear Richards opinion learned a lot from reading his posts. This charity should give him a job. The guys really helpful. Sorry for the long post and bad English. Me a science and maths man.

Dave from Aintree

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Davideo
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21 Replies
Fibro2021 profile image
Fibro2021

Smell is a very subjective thing, but you may be tested for ammonia in your blood.

Davideo profile image
Davideo

Always after meat fibro if I don't eat meat I don't get the smell. Some people say its the protein in the meat but I disagree I don't get get the smell after nuts.

Fibro2021 profile image
Fibro2021 in reply to Davideo

The final substance into which meat protein breaks down in the body is ammonia. Plant proteins are generally better tolerated as they contain many branched-chain amino acids, BCAAs

Murffie68 profile image
Murffie68 in reply to Davideo

I agree; plant proteins are much more easily digested, in my opinion...

kensimmons profile image
kensimmons

I'm NOT a doctor. Don't give up hope just yet. You might simply be going through its own method of detox and is throwing out years of stuff in any way it can. You should drink as much water as you can, help yourself out. Eat what you can keep down. And for the love of everything don't drink anymore. Oh and salt can be sweated and pee'd out, so in this state I would try to get something salty like slices of ham inside. The fact that you don't have jaundice or ascites is a good sign. Take a good shower, you will still smell but you will feel better. Change the bedclothes (your are probably smelling days old "amonia" just from what you are wearing and sleeping on.

Keep at it - you can do it.

Davideo profile image
Davideo in reply to kensimmons

I shower once every two days. It's the heat the sweat. But your right about the water. The smell is not as bad when my body's hydrated. When I drink lots of coffee and my body's dehydrated me sweats smells worse also after meat a amonia smell.

Davideo profile image
Davideo

The drink no more. 20 years of my life wasted through drink. It's like waking up from a coma after 20 years. Very strange but nice to witness life.

Porcupine_Tree profile image
Porcupine_Tree

It is essential you stop drinking .. No 1!!When I first became ill, the first thing the GP did was take two sets of bloods 1 week apart. At this point I was referred to a Gastroenterolist.

The first appointment was scary however I went with a bucket load of questions . The Gastro arranged, scans and biopsies and soon I had a clear picture of my condition and a schedule to work with.

So in essence you need to stop drinking first and foremost. Eat well ,excersise and keep up with the Gastro appts.

Build relationships with your GP and Gastro and start to keep a diary.

Keep away from Google ( This is essential). By all means share your concerns with others but stick with the professionals for proper advice.

I found what worked for me was to take control and treat it like a project. Speak with thr BLT nurses and join the support Zooms.

Try and stay positive. Good luck.

BritishLiverTrust1 profile image
BritishLiverTrust1PartnerBritish Liver Trust in reply to Porcupine_Tree

Thanks Porcupine_Tree.

If Davideo would find it useful to talk things over with one of our nurses (and is in the UK), our helpline is open Monday to Friday from 10am to 3pm on 0800 652 7330 (excluding bank holidays)

Likewise, more information on our Zoom groups and how to register to join can be found here: britishlivertrust.org.uk/in...

Best wishes

British Liver Trust

Davideo profile image
Davideo in reply to BritishLiverTrust1

Going to give yous a call tomorrow

marknash67 profile image
marknash67

Are you mad!!!! Drinking again!!!! I've stopped drinking now for 18 months and the liver transplant team have said if I drink ... I die. STOP DRINKIN AND GIVE YR SELF A CHANCE!!! Stop drinking and you will live and its as simple as that

Davideo profile image
Davideo

The last 3 years I've stopped the drinking. About 5 times in them 3 years I relapse. This is something I've got to put right. Them 5 times it was only 1 day followed by a 7 day hang over. The aniexty is the worst.

Millie09 profile image
Millie09 in reply to Davideo

I totally understand the relapse side of it, I had underlying panic attacks and anxiety ,top it off I was starting to become agoraphobic.. I fought as hard as I could.. two years of alcohol counselling along side CBT for anxiety etc.. hard work keeping diaries and other work I was given to do at home but if you want it bad enough it's really worth doing. You say you have anxiety.. tell your GP or you can even self refer to your local mental health team for cbt yes there's a waiting list but you can always get the MIND app or even CALM app ..try but as for drinking alcohol..please try to abstain as your not doing yourself any good physically or mentally .

Stay off Google!! WORST THING YOU CAN EVER DO .

I'm 14 yrs with cirrhosis, yes I relapsed big time for 2 yrs after my dad passed but my story is a very long one 😔.

Try remain positive and seek the correct help for underlying issues

Linda

Anthonysmate profile image
Anthonysmate

David, there is help around with giving up the booze, no its not easy but only you can make that choice and stick to it, you can get help through your GP or of course AA, there are a number of online support groups which can be beneficial if you are feeling isolated, Bright Eye is one, but there are many others which you can Google...

Cat-B profile image
Cat-B

I really think you need to discuss all your symptoms with your doctor. Detoxing on your own is dangerous and miserable. It sounds like an ultrasound or MRI might help with a diagnosis, please don’t use dr google! My eyes didn’t get a yellow tint until I was in end stage. You need a diagnosis and then a treatment plan, hopefully things aren’t as bad as you fear. Please keep of the booze and try to eat a healthy balance with lots of protein. Let me know if I can help when you have seen your doctor. Good luck

Davideo profile image
Davideo

Thanks all the replys I have taken on board what's been said and I'll next be back when I get the results of my scan. The booze is an issue but 5 days in 3 years is not bad for an 20 year alcoholic. The 5 times I've been on the booze it's always because of arguments with my girlfriend. It's something I've got to eradicate in my life. But I'm not getting rid of her I love her to much its something we both have to work on.

Millie09 profile image
Millie09 in reply to Davideo

Good luck Davideo 👍

Richard-Allen profile image
Richard-Allen

Well, Dave Where do we start? Many thanks for your kind words.

There are many points of interest you have raised so I shall try and help if I can.

Firstly, I don’t use the word “Alcoholic”. This I believe is just a label that wrongly stigmatises someone. When it comes to alcohol abuse, there are two many types of issues here.

Firstly there is the person who develops a drinking problem. Here they are drinking because they choose to. This may be for many reasons. It could be due to a certain lifestyle. Going to the pub every night on their way home from work, or glass or two of wine every evening with a meal, etc. For some alcohol can be used as a form of self-medication, often used to treat depression and as a coping tool for a traumatic event in a person's life.

Certain behaviour traits can also be a factor. A person can have personality issues, a lack of self-confidence, body dysmorphia, loneliness, etc. These people turn to alcohol in an attempt to make themselves feel better. To them, alcohol becomes a crutch. Later on, it can feel like alcohol becomes their only best friend. After all, it tries to make them feel better, and it’s always there when they need it.

The second type of person is the one who has now developed an addiction to alcohol. The alcohol has now been allowed to take over their life. They are no longer drinking because they want to, but because they have to. The addiction is now driving their need to drink. They now need a drink in order to function. That leftover glass of beer from last night becomes a cure for that dry mouth in the morning. That glass of wine that’s needed before taking the kids to school. These are now addiction issues.

So, for me. A person either has a drinking problem or an addiction issue. Both these conditions are curable. Unlike the “Alcoholic” which is just a label that is there for life. Hi, My name’s Richard and I’m a recovering Alcoholic. We don’t stigmatise ex-smokers or those people who have stopped biting their nails. So why label people at all.

You may have read me mention this before, but about 82% of people who go on to develop liver cirrhosis or end-stage liver disease, aren’t actually addicted. They most certainly have an alcohol issue, but they're not addicted as such.

I’ve recently joined a local Drug and Alcohol support group where I live here in the West Midlands. I initially wanted to try and offer some help and support. But I found that the organisation itself has got it wrong, they class everyone who turns up at their door as being an alcoholic, and that they all have an addiction. My attitude is that bringing about change, it can only be done from within. So, I’m looking to change their perception and remove the stigma and labelling.

I think there are several things you can do here to help yourself, Dave. Try and self-analyse yourself. Look back on your life and be honest with yourself. See if there is something that has made you go down this road in your life. Sometimes we use alcohol to blank something out. The true meaning as to why we drink can become lost. But there can often be an underlying, undealt with, cause behind it all. A childhood traumatic event, a bereavement, bullying, there are so many different reasons, and these can be both personal and private, so we never get to talk about them. We just store them up and leave them unprocessed.

Over the years on this site, there have been many horrific accounts of people who had turned to alcohol for various reasons, and when you hear their stories, you can understand why. A child who witnesses her father murder her mother. A woman who spent 11 years blaming herself for being raped. A man who couldn’t save his son from drowning. Etc. This is a bit like, “Cause and Effect”. If the “cause” was the “reason”, and the effect was the drinking of alcohol as a form of medication, then by treating the cause, the effect becomes redundant.

The fact that you’re on here seeking support and advice speaks volumes about your wanting to make a change. This is a good start. But recovery is going to be a long, journey, and you're going to be needing a lot of help and support. Your GP is your first port of call. He/She shall be running a load of tests checking on the damage that’s been done. Try and remain positive. There’s nothing broken that can’t be fixed. But YOU have to want it, Dave.

If your GP refers you to a local gastroenterologist this can be a good start as they will most likely want to run some scans and blood tests etc. However, most gastroenterologists I have come across treat the condition and not the person.

Alcohol addiction is very much a mental condition, and this needs to be dealt with at the same time. Your GP is the person who should be looking at both your physical and mental needs. Most local hospitals now employ an, "Alcohol Liaison Nurse". See if you can get a referral to speak to this person. Not only will they help, but they will also most likely know of any trials or treatments that are currently available.

You are somewhat fortunate in where you live, as there is a good local support network in your area. I did also hear a while ago that the Alcohol Health Alliance was moving to Liverpool. (I’ll send you the link privately). There is also “Alcohol Change” which might be very useful to you. I see also that there is a place in Liverpool called, “The Brink”. This is one of Liverpool's first dry bars and restaurants.

Why not join a local alcohol support group? I see that Aintree University Hospital also runs the Liverpool Community Alcohol Service and provides support, treatment and advice for people in varying stages of alcohol dependency. They might be worth taking a look at.

When you join these support groups, try and have an open mind. If you go there with the thought of wanting to help others, then you’ll feel a lot more comfortable. The knowledge you’ve already gained along your alcohol journey will be of great use as people will be able to empathise with you and be more willing to open up about themselves.

Helping others is a great way to help yourself in your recovery.

Now a little about the health aspect.

Firstly a word of warning here. Alcohol withdrawal can be most dangerous and should ideally be carried out under strict medical supervision. There is a danger of the body going into shock, which in turn can cause life-threatening complications.

Because your liver may now be heavily scarred, it might be struggling to function and rid your body of toxins. This could take days to detoxify your body. The mini seizures could be a sign of alcohol withdrawal. Alcohol withdrawal can also bring about a feeling of guilt, failure, and depression. You are after all in a dark place.

Alcohol-related liver disease isn’t an exact science. We are all built differently. I only had mild ascites but had a large variceal bleed. I developed liver tumours, many people don’t. Some people don’t turn jaundiced while others may have other conditions.

I’d wait until your test results come back and you have a better picture as to what is wrong. But in the meantime try and think of a life beyond alcohol.

Finally, have faith in yourself and want to bring about this change in yourself. Only you can do this, but you have to want to. You can do this.

There’s nothing you can do about yesterday, it’s gone and is where it belongs, it is now in your past. But there is something you can do about today, and certainly, there is something you can do about tomorrow. Have positive thoughts and embrace the change.

Today is the first day of the rest of your life. You can do this, and in doing so, you can help others too.

Good Luck Dave, have faith in yourself. You can do this.

Richard.

Millie09 profile image
Millie09 in reply to Richard-Allen

Wondeful post Richard 👏.. so carefully written and knowledgeable

redpoint72 profile image
redpoint72

we'll done richard....what a great and thorough response.chris

Davideo profile image
Davideo

The reason behind my drinking lack of self confidence. I could pull as many women as I want when I had a drink. But when I was sober I would start shaking when I spoke to them. This was due to lack of self confidence because I was bullied at school. That why I don't go to any aa meetings not got the confidence. Now I'm 41 and have a girlfriend the last 3 years the stopping drinking has become a lot easier. But 5 times something bad has happened in my life and I fell of the wagon. Lucky for me each time was 1 day only because the hangs overs lasted that long. Thanks for the post Richard I take on board what your saying and I feel you should keep to your studies and gain as many qulifications as you can because it's paying of. I'm educated grade B maths and Science GCSE and AS level. Didn't attend my A level exams. Not bad for someone who done no homework. Only grade D English language but grade C Literature GSCE level. Got grade Bs GCSE level IT and history.

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