Help Please

[Bs1524]

My husband has just telephoned me at work to say he feels very odd like he has had a drink. He hasn’t so is this a build up of toxins?

[ThreeSmiles]

Hi bs

If he feels bad enough to phone you he ought to get taken to the doctors - tell him not to drive!

Excuse me if you have said before, but has he had HE episodes before. If he has and has been in Hospital you can (this is what I was told) bypass the doctors and go straight to A and E, or the Medical Assessment department.

Hope you get it solved...

Note:- This is just what I would do because I suffered HE badly (wasn’t able to work) so what you do obviously depends on your husbands medical background ......

Miles

[Bs1524 in reply to ThreeSmiles]

Thanks, he has stopped driving anyway as he feels so unwell he doesn’t want to go out. I have got back and he feels better he said he woke up and felt odd. I think he has had periods of confusion, he doesn’t. I wish his gp had shown more interest when we told him about his tummy starting to swell a little and his legs being swollen. It feels like you have to fight all the time. Thanks for helping. Are you able to work now?

Pam x

[ThreeSmiles in reply to Bs1524]

Hi Pam

Ah he works from home then👍.

That is typical of HE I’m sorry to say ☹️. When only mild you will know he’s confused but the person - your husband - thinks they’re fine!! But they are definitely not! Hope it doesn’t progress to a full blown episode- unless it has before - in which case it probably will again - sometimes months apart between episodes - sometimes only days 👎🏻.

I had to stop working 5 years ago. Then had TP last year but still not up to “proper” work. I do two half days as a Volunteer at local Hospital which is fantastic fun (driving a big (ish) electric patient tandem 😁. Yes I have been been able/allowed to drive since May 👍.

Miles

[Wass71 in reply to ThreeSmiles]

King of the road!! (well, hospital)

[ThreeSmiles in reply to Wass71]

Lol!

[Bs1524 in reply to ThreeSmiles]

No he is at home but not working. When I got home he seemed ok, phew

Pam

[ThreeSmiles in reply to Bs1524]

Aha OK. But keep an eye out - if it is HE related it comes and goes ...,Not wanting to be pessimistic just from my - probably extreme - experience! And if it is HE he won’t be allowed to drive ☹️ although no-one told me that until I went to my Transplant Assessment!

Any worries get to that doctor!

[Bs1524 in reply to ThreeSmiles]

No one has said not to drive he just doesn’t feel like and as he won’t leave the house. Can HE be brought under control I can’t work how well someone can be with this.

Pam

[ThreeSmiles in reply to Bs1524]

Hi again Pam

I’m sure some will say diet will help but I don’t know - nothing on that front seemed to work for me. You have to try and stop the toxins that are not filtered by your liver from getting into your brain. The way I was told - and it seems standard stuff - is you have to try and go to the toilet to “empty your bowels” 3 or 4 times a day. To encourage this you are prescribed lactulose, in increasing doses if necessary. Then additionally Rifaximin may be also prescribed. If the target still isn’t achieved he may be prescribed self administering Enemas (this is really when all else is failing to work adequately).

Of course don’t forget the 2.5 litres per day of water or squash that you must drink.

I’m sure this is covered on this forum’s help under Hepatic Encephalopathy. Maybe search for that!

All the above is just my experience- I have no medical training whatsoever. So please please consult your doctor - which you will have to obviously to get the prescriptions!

Re driving, if he does feel up to it, be careful because if he does get diagnosed with as having HE it could have insurance implications.

Sorry to be so miserable - but this is all lessons learned the hard way for me.

Good luck

Miles

[Bs1524 in reply to ThreeSmiles]

Thank you once again he was told to cut back on water initially then told h could drink more but no one said how much. I will get on that tomorrow

Pam xx

[ThreeSmiles in reply to Bs1524]

Please check everything through with your doctors, but drinking that amount of water should be OK for anyone! I still drink that much - actually 3 litres - post Transplant!

Miles

[jojokarak]

Is he on lactose?

[Laura009 in reply to jojokarak]

Yes he is

[Hidden in reply to Laura009]

Hi Laura,

Have you thought to keep track of these episodes? While it may be HE, we probably should not just assume that. If you have a calendar that has space for writing you or your husband could note when it happens and then let his doctor know about it with how often it happens and what he is feeling when an episode occurs, especially if there is an increase in how often or how severe he thinks it is.

You don't say how much lactulose he takes, but my husband takes 45ml twice a day and was told he could increase either the amount or how many times he takes it by his doctor. You probably should call the doctor and ask if that is possible for your husband and if it fits with his symptoms.

Best wishes to you both,

Mary

[Bs1524 in reply to Hidden]

Hi Mary,

He has been to increase the amount of lactulose if he needs to. I will try to make a note of episodes, good idea.

Thanks

Pam x

[Hidden in reply to Bs1524]

Hi Pam,

Hoping things improve soon for you guys.

Best,

Mary

[Wass71]

Hi, sorry your husband is feeling horrid, I hope he returns to normal and he doesn't suffer with HE, it sounds like an awful thing to suffer from.

Wishing him well.

X

[Bs1524 in reply to Wass71]

Thanks, he really frightened me and he was obviously concerned too but thank heavens it seems to have passed.

Pam x

[cherrygirl13]

I am not sure how things work now - but if you take husband to hospital - make sure you stay with him !!!! When my husband had his many HE episodes and turned up A&E he was turned away as ‘being under the influence’ - this is how his symptoms showed - disorientated/confused/slurring speech/talking about random rubbish - now we think we are just starting (this bit again) I have been giving him the odd dose of lactulose which has calmed him a bit - whatever you do - make sure he sees a GP at least (as it will go on his records) and this is useful for the future in ‘proof’ that it’s not a sudden symptom - 🥰

[Bs1524 in reply to cherrygirl13]

A couple of weeks ago his tummy seemed larger and his legs were puffy and he seemed to me to be a bit yellow. He was at the hospital for his MRI so I finally got to speak to GP who said go to A&E the doctor there was happy to leave him as he was seeing his GP in a week his GP was bothered too much as he was now under a consultant??!!!?? We are waiting for the next consultant’s appointment to come through it will be after today’s endoscopy and I expect it will be end Oct beg Nov. I am going to try today to get his secretary to see when it is likely to be explaining I have to take time off work to bring him to appointments. I don’t know if this he s normal or they feel it is self inflicted.

[Megbird]

I hope everything goes well.

[Hidden]

Hi

Has your husband ever had his B12 bloods test checked. The signs you are mentioning my husband had about 5 years ago . Your hubbies symptoms could also be liver related as Miles mentioned , however I thought I'd mention ithe B12 just incase. My husband was so bad his legs went along with his memory for a few days. After blood tests he was eventually given B12 injections monthly for 12 months followed by B12 tablets for life . However he does like the red wine and gin too, so it could have been a combination of HE which he's never been tested for and I'm guessing I'll never have proof on that point as it will never happen.

I do hope your hubby feels better soon but in the meantime he must take care and speak with his GP .

Trish

[Bs1524 in reply to Hidden]

He has been diagnosed with chronic liver disease, cirrhosis of the liver but I guess he could have any number of other issue they did do a major blood work up a few months ago and when we finally get next Consultant’s appointment we are to go two weeks before that to get another major blood work up. The GP did add to that to check kidneys so pleased he had that afterthought.

Pam x

[Hidden in reply to Bs1524]

Hi Pam

Thanks for updating me on your hubbies full condition. Hopefully his next bloods may highlight the cause of his weird feelings and meds or whatever his consultant recomnends improves his overall health.

You take care of yourself too and I look forward to following his progress.

Trish

[Bs1524 in reply to Hidden]

Thanks Trish it has been a lot to adjust to in a short space of time.

Pam x

[Hidden]

Hi Bs1524

Here is the link to our information on HE, hopefully your husband's medical team can assess him for this if he is showing any symptoms,

britishlivertrust.org.uk/in...

Best wishes

Trust1

[ThreeSmiles in reply to Hidden]

Hi Trust1

I’m disappointed now; Nyacin was never mentioned or prescribed to me! I feel let down......😑.

Of course I don’t really!

Miles

[nolamcphe]

Western U.S. here. My husband since 1992 with history of hepatitis C, started getting a little confused at times in 2014, more confused and confrontational in 2015, then really confused, combative and violent in 2016. It went from forgetting to pay bills and close the barn doors to beating the crap out of our house. Throwing things, breaking furniture, busting doors. There were times that I literally had to run out back door and hide in the woods. I KNEW it wasn't him, it was medical. Doctor finally diagnosed HE (hepatic encephalopathy) started lactulose 3 times per day. He hated it, but he quit scaring the crap out of us with his violent outbursts.

Lactulose pulls the toxins out of the digestive tract as the liver can no longer function to eliminate toxins. We do get his AMMONIA level checked several times per year as elevated ammonia levels affect behaviors.

Good luck, HE is NO fun.