Foggy brain

[Smyally]

Hi. Ive got a quick question for anyone who suffers HE. Ive had HE two or three times before and I’ve been on rifaxamin and lactulose for a couple of years. I still get mild confusion. I finding I’m getting frustrated today because I had a meeting regarding my daughter with special needs I’m really struggling understand or explain information to others that would have been easy for me a few years back. Does anyone else get frustrated with having a foggy brain?

[Isabelle2]

Hi

Explaining, yes. It’s so frustrating.

I had severe HE just at transplant - infact I nearly didn’t get transplanted as I was so ill. This has left me with some permanent damage, minor but I’m not quite like before.

Eg Yesterday I got really upset as I was trying to explain something quite complicated to my lovely OH. He interrupted on several occasions as he thought it was simpler than it was and I found myself losing the tread of what I was saying.

It’s really annoying, even with loved ones. With others I find I have to make an effort to slow down, use a crib sheet if a planned conversation. I find writing much easier although my spelling is awful. Handwriting poor too. Thank goodness for keyboards and spellcheck!

[Smyally in reply to Isabelle2]

I’m glad I’m not the only one ( not glad that others suffer it too). Sometimes if feel like I’m going mad. Like you I’ve had it a lot worse though.

[Thistle09 in reply to Isabelle2]

Isabelle2, it sounds to me as if your problem is that you're up to speed in understanding a complicated medical situation, and your loved ones are not. Maybe others feel threatened by your ability to understand such arcane subject matter. If you have to "make an effort to slow down" and "use a crib sheet" to bring them up to your level, you're waaay out in front of them. I know nothing about your overall situation (family and such). Seems to me that the "others" figured their education was over years ago and are resisting the idea of learning something new. Would your nearest and dearest consider going to joint counseling sessions with you?

[Isabelle2 in reply to Thistle09]

No it’s not quite that. My OH has always admitted that I am more intelligent than him (!) but I can’t find the words sometimes, esp when under pressure. I tend to gabble when I talk now. Have just changed anxiety tablets as they might be to blame.

[Hidden]

Hi

I was constantly foggy before my transplant, I found it impossible to do the things I found easy and when I did them they were generally sub standard, it was dis heartening.

Even when I thought I was ok people now tell me I was not myself

Its only after the transplant do I really realise, and the constant comments that my voice and the old me is back and the comments you are pink!

It makes me sad to think I did not know and my thoughts are really with you.

Mind you as you it was a lot worse when whole days just disappeared and

I have never remembered them, the lactulose and rifaxamin controlled most of that

Good luck as mine did get better at times

David

[Smyally in reply to Hidden]

Thanks David. I’m on the transplant list and consultants at Addenbrookes have it will get better after transplant. I’m normally quite positive. I think yesterday was particularly frustrating because I used to work in the special needs field once myself and I was just so confused and couldn’t word anything properly so got the anxiety as well. Thanks for the reassurance

[Thistle09 in reply to Smyally]

Smyally, you came to the right place. When you have that feeling that no one is listening to you, come here. We're all listening, as we all have variations of the same condition.

[Smyally in reply to Thistle09]

Thank you. On here people do understand because they’ve lived through in one way or another. Sometimes in life I get the impression that people really try to understand but they just don’t get it.

[Hidden in reply to Hidden]

David, exactly same. I’ve lost days and days due to HE. Also lost 20 days of a 21 day cruise because we had to get off due my severe HE. Apparently (sorry if too much detailso skip if need be ) I was having a wee in the shower on the boat - well I didnt know - did I?) and sh said to stop that now and go in the toilet. Apparently I struggled to fit in! Oh these darn small ships cabins 😁.

Glad you’re getting better now 😁

[Dldtx]

Yes seems like daily and I take the same medication, having to repeat thoughts or ideas that seem like it should be easy to understand for others. Sometimes I wonder if the words I am saying are being heard correctly, or did I say something else, and think I didn’t. It does make me feel lost in the discussion because I am trying to process and respond and obviously others are moving on or I am not getting my point across or maybe I am rambling on. This leads to frustration and then I might just forget afterwards anyways. I have had to get someone I trust to help me or go with me to the doctors appointments also especially in legal situations just so they can remember for me and advise me along the way. I am having to use the route directions in my automobile more frequently (like a crutch) just to feel comfortable about driving to places I have been going to repeatedly and should know the route and also find my car App when I park at the stores. So yes to foggy with a chance of storms.

🤠DlD TX

[Smyally in reply to Dldtx]

Hits the nail on the head there. I know I’m not the only one, I just really let it get to me yesterday. Thanks

[Thistle09]

Seriously? I'd say it's quite normal to be frustrated when one has a foggy brain!

Dear Smyally, if you've been taking rifaximin and lactulose for a couple of years, either the pharmacy has been giving you sugar pills/syrup or your doctor is not paying attention. IMO, the problem is that you have too much on your mind, trying to deal with your own condition and worrying about your daughter. I don't think it's HE.

Have you ever meditated? It's actually very simple; no voodoo or mystic chanting or beating of drums. The hardest part is finding a quiet place where no one will interrupt you. You don't need to assume a particular physical position; you just need to be comfortable. If that means surrounding yourself with pillows, putting a blanket over your head, and curling into a fetal position, that's fine. At first, just let your mind wander wherever it may go, but do not linger on any special thought or worry -- all of that will come back to you later. Let your thoughts fly by without reflection. If you doze off for a bit, don't worry about that either. The point is to reach a point where you really aren't THINKING about anything at all. This takes practice. Every time you're having one of those frustrating days, make time for yourself to go back to the quiet place. That's about all there is to it, really. Consider this Lesson #1.

[jojokarak]

I had numerous amounts of h.e. and was on rifaximin and lactose the same as you, mine was made worse because I suffer with ibs and was constantly constipated.... First time my husband realised how bad it was, was when I was admitted to hospital he come in the next day and the nurse asked me who he was and I said it's my brother!! (Obviously I don't remember any of this)

H.e. has to be the most awful symptom of cirrhosis you lose days and weeks and it also leaves it's mark post transplant I have been told I now have mild brain damage, my concentration is shot, I can't remember names and forget what I am talking about mid conversation, if I want to ask something important I have to write it down, so my new best friend is my diary lol

I feel 13 again hahaha 😂

But we're here x

[Smyally in reply to jojokarak]

That is exactly how it feels sometimes. I first got it after my TIPPS procedure. It took me two days to remember that I was married! And yes we are lucky to still be here. Feeling more positive today. Thanks. Hope you’re doing a bit better now

[jojokarak in reply to Smyally]

I got it after tipps procedure as well but it saved my life having it ... And I good thanks it's everyone else who has a problem with my inaccuracies but I don't care x

My consultant just used to say I could have as much lactose as I want if I felt foggy it wasn't going to harm me

[Isabelle2 in reply to jojokarak]

Exactly! Similar for me. Also my speech has changed. Friends I’ve met post op thought I’d had a stroke. Handwriting, never great is now awful!

[Hidden in reply to jojokarak]

What was that jojo?

Sorry bad humour but ditto, but maybe not as bad. But you’re really interesting jojo and a good raconteur. Keep it going! 😁

🇧🇧

[Hidden in reply to Hidden]

Omg sorry jojo that was posted 4 months ago, and I thought brain fog was going away....ahhh but the tablets yes the tablets ..lets blame the tablets 😁

🇧🇧

[Hidden]

Hi

I haven't been diagnosed with he but feel I have it sometimes, I get so confused, forget words mid sentence etc. Love to you all Lynne xxxx

[Thistle09]

Maybe it's time for everyone to review the information about HE posted here: britishlivertrust.org.uk/wp...