Questions about HE

[FlippinOut]

Thanks to all you lovely folks here for the help and support you’ve provided me so far. If anyone has had HE, could you tell me how you felt?

Did you realize you had it or did someone else point it out?

Can you have episodes of HE for just a couple of hours at a time and then feel ok for a few hours on and off throughout the day? (Feeling off or confused one minute and fine the next)

Did anyone notice any strange smells from time to time (like smelling perfume or flowers when there weren’t any around)?

Is HE always associated with constipation? Can you have it even if you have several bm’s daily?

Does HE cause balance problems and loss of strength that comes and goes? One day I can do a 30 minute yoga session with no problem and the next day I can barely walk straight.

Anyone have their eyesight affected by HE?

I also get a strange pressure between my eyes in the sinus area. Have never had allergies or sinus problems before.

Thanks again for any info.

Anita

[VeeWat]

did you ever go for an MRE? That should tell you your stage.

[FlippinOut in reply to VeeWat]

Haven’t scheduled yet. I have appt for endoscopy and colonoscopy next month which will at least look for varices. If I have varices would there be any need for the MRE?

[VeeWat in reply to FlippinOut]

Having varices would mean you have cirrhosis but if you don’t have varices you could still have cirrhosis or maybe not.

[FlippinOut in reply to VeeWat]

The CT Scan showed cirrhosis (nodular liver surface contour). Could you have nodular liver and not have cirrhosis? I’m just not sure if the MRE will give any more info. Do you think it might show something different?

[VeeWat in reply to FlippinOut]

I think I would want MRE staging. It might only be stage 3ish.

[Alibaba80]

Anita I have the strange pressure feeling in my face and head and mainly sinus'. I've told all of my doctors about it and noone seems to know...Does it come and go? Mine does. It is very strange and uncomfortable.

Anita did you say you had problems eating?

What is your diagnosis again?

[FlippinOut in reply to Alibaba80]

Yes it comes and goes. I’ve been diagnosed with cirrhosis from NASH.

[Alibaba80 in reply to FlippinOut]

How is your eating Anita and your heart symptoms?Do you get heart flutters by the way?or strange feelings in your heart area?

[FlippinOut in reply to Alibaba80]

Some days my appetite is fine and sometimes I feel too nauseous to eat. I do try to eat every day though to keep my strength up. I’ve had issues with tachycardia but I’m on meds now that have it under control. How are you doing? Feeling any better?

[Alibaba80 in reply to FlippinOut]

I am pretty much the same Anita...very up and down. I'm trying to eat little amounts as I am very underweight but it is very hard and I do not want to overload the liver.Anita do you have any breathing issues? Do you get the sinus pressure after eating or is it simply random?

[FlippinOut in reply to Alibaba80]

Seems random but I’ll pay closer attention now that you mentioned it. I may have developed a food allergy which would also explain my GI issues.

[Alibaba80 in reply to FlippinOut]

Yes I understand. Anita, can I ask you what medication you have for the tachycardia please? Is it a betablocker? I have the fast heart rate aswell I find it very very uncomfortable and I would like to know what causes it

[Shep666]

Hi - to answer your questions

How did it feel

Like I was living in a fog, slower reaction\response times (simplified - it felt like I was always a sentance behind in conversations). Confused behaviour and choice making. Tired some of the time, just thought natural energy dips.

It built slowly overtime. That steady creep up smothed out any jolt of realisation.

The rate of build and how constant = slow and variable.

No constipation.

Was I aware of symptons before being told about HE - not reallly, I thought I was fine, didn't really notice my decline in behaviour. Others did.

Mood swings - I put down to alcohol and anxiety. HE made them far bigger than I realised.

More introvert as keeping up with life became harder - didn't notice that myself, others did.

No smell/taste issues. Eyesight ok.

Balance and all round judgement slow change - not really noticed by me - others noticed.

No head aches/sinus.

These were most of my symptoms, I guess I have missed some and that everyone is not the same. Strangely It was a shock not a relief to find out about HE as I had not noticed them or attributed some of them to other things.

Aplogies for the length of post 🤐

[FlippinOut in reply to Shep666]

Thanks for your reply Shep. May I ask if you had a diagnosis of liver disease before the HE started or was that your first symptom?

Also did you have times when you felt fine, clear headed, no other symptoms? In other words were the symptoms sporadic or constant?

I saw you posted that you had a transplant. Congratulations! Hope you’re doing well and I wish you all the best.

[Shep666 in reply to FlippinOut]

Looking back, HE was affecting me waaaay before an "official diagnosis" of liver disease. But then, like many here, I was exhibiting extreme levels of denial, anxiety and stupidity in refusing to get an "official diagnosis". I had classic yellowing skin/eyes, excess fluid (abdomen/legs), large weight loss + lots of HE symptons when i finally went to A&E.

Even when i went to A&E, looking back and being honest, it was the fluid and its effect on my daily life that made me go, as I said earlier, I was not even noticing my erratic behaviour caused by HE. My partner had tried everything at that point to get me to the hospital. Even when I went, I had "booked a slot" by telling her I would go next tuesday - how insane is that!!

Did I have times when I felt fine, clear headed, no other symptoms? Two answers, yes I did in my head, real answer - no. In reality I had better and worse days. Now knowing what I do and keeping it simple, it makes sense seeing it as a toxin level. A steady build up of toxins one day, some "drain", some more toxins, "drain" and repeat, repeat repeat.

Thank you, I am very very lucky, I have had a 2nd chance with a life saving and brain changing transplant. I know some people continue to struggle after a transplant so I am even luckier to be in the position I am now.

Earlier ownership of my issues, earlier diagnosis and life style changes and my outcome may well have not involved transplant - please folks assess/address yourself and get help/treatment. Easy said I know (I love telling and not doing 😜).

Good luck 👍👍

[Barneymiller]

I think I have H.E I keep getting confused and agitated and my testicles keep swelling up I also lose my balance and forget people's names and character's on TV and slow at doing anything.

[AyrshireK in reply to Barneymiller]

Hi Barney, do you have a diagnosis of liver disease? Some of your symptoms could potentially be liver related but the only way you'll know for sure is if you have some medical tests with your doctor.

Katie

[Barneymiller in reply to AyrshireK]

No I don't apart from alcoholic fatty liver disease by ultrasound I'm experiencing liver pain and waiting on an appointment with my GP on Monday I'm getting confused with people's names on TV which I used to know and and I'm itchy and have a dry mouth with a yellow furry tongue I'm also forgetting where light switches are I'm finding it hard to get around due to muscle weakness I take lactulose and fybogel but I end up with diarrhoea and flatulance rumbling stomach and painful gas I'm gonna ask my doctor my doctor if he can refer me for a fibroscan I've also lost 9lb in weight in the space of 2 to 3 weeks