Brain Malfunction

Ok, so for those who don't know I work full time still, how...sometimes I don't know, anyway I leave for work at 0630/45 for work and get home about 12 hours later....last night I got in at 2015....

So being a bit extra tired this morning, because I don't sleep really anymore meant my brain went into meltdown. I couldn't find my phone for 20 minutes, I almost cried; was in my hand the whole time...

I put an dissolvable paracetamol on my tongue instead of in the glass of water and proceeded to drink the water...resulting in my looking like I had rabies - I know...classy!

They have me on Lactulose now 4 times a day 40ml a time - I don't think its working...

Well that should cheer you all up on tis wet and dank day :-)

30 Replies

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  • Ha thank you. yes I agree I totally do all of those things, and your right most of the time it's on me. :-)

  • Are you on Rifaximin as well?

  • Never heard of that on Kate. I am due to see a local Hep team next week I shall speak to them.

  • It is now the standard medication for Hepatic Encephalopathy symptoms along with your Lactulose. Hubby was put on it by Transplant Team in June 2014 due to minor HE symptoms. Deffo ask about it if you feel you are getting these 'foggy episodes' and lactulose not working on it's own.

    Katie

  • Thank you Katie, I spent a good 15 minutes yesterday looking at my socks and talking about how warm they were...when I was in a meeting at work - good job she's my friend and understands sometimes my brain doesn't quite work.

  • I would definitely note down all these 'episodes' and tell your hepatologist what's going on. These are all most likely to do with HE and so you need to be on the right meds - HE can be very serious if it deteriorates so best to act now. These 'funny occurances' can turn into quite major deals - I really don't know how you are coping with the hours you are doing. My hubby struggles with minor day to day tasks due to his fatigue and concentration difficulties ....... can't even follow basic instructions to cook a meal or work a mobile phone. Even several times had a complete brain block when writing cheques.

    Bluebells who posts on here found that her hubbies HE has improved by going onto a veggie diet so cutting out red meat protein which can lead to more toxins.

    Wishing you the very best of luck. Your T/P team should know of these additional symptoms.

    Katie x

  • Chelle, sorry your having a mind meltdown ,,,im sure its just the hours your doing and its temporary,,,,,you did make me laugh regs the mobile phone in your hand,lol,,,the Lactulose is quite a high dose 4 times ,,you should be going to the loo with ease ,,give it abit longer ,,im on 15 x 3 a day its working but could be better some foods do bung you up ,,and go when your body wants to,,ive learnt a lesson in that ,,,there is another med which can help,,its something like riboflaxin im not sure but someone will correct me ,,,it works in combination with Lac,,,,your not going crazy ,,,its just a bad moment ,,,keep the PMA and take care Matthew

  • I know 4 times a day and it really is my least favourite med. Really too sweet, I've been on 4 times for about a week or so to in crease from once every two days and so far - nadda. lol. Things will settle soon I'm sure. I jus thought it all might make you laugh, should have taken a picture of me foaming at the mouth...Hope your well.

  • Hi chelle, I get the same for getting things it has got so bad last week I couldn't remember how many lights we had at the top of the stairs,thought 1 it was 2, told I can't continue with my job because I was climbing & doing high voltage cables, so I'm back to square 1 regards work, only thing I try to remember is that it's all part of the liver problem.

    Think positive & laugh.

  • Oh Mick, Im sorry to here that! I think mine was just a result of being tired. I hope you can find someone that will keep your mind active in the mean time x

  • Hi Chelle. I am unfamiliar with your story and your illness and have read this and I am totally 'lost'.

    May I ask what the back-story is to your brain meltdown etc?

    Thanks, Paul

  • Paulio, if you click on Chelle-PV's name on any of her earlier replies it will link direct to her profile and you'll be able to see all her previous posts and get the full details of her condition without her having to rewrite all the information which I am sure she'll not have the time or inclination to do.

    Suffice to say she has very recently been listed for a liver transplant due to cirrhosis & all it's many symptoms and she is being treated for Hepatic Encephalopathy which might explain her recent 'brain meltdown' symptoms.

    Katie

  • Thank you xx

  • Yup as Katie says, I have Liver Cirrhosis, Portal vein thrombosis and Blood cancer. But feeling quite fuzzy yesterday because being quite tired and a little HE I think.

  • Thanks for taking the time to reply Chelle and i wish you well :-)

  • Ah yes, indeed. How very lazy of me. Thanks for the heads-up :-)

  • yes sleeping can be a prob , iam lucky to be able to sleep in the day still waiting 4 years on

  • I love sleeping through the day - love my weekend naps! x

  • Hunting for glasses and they are on the head! Hunting for car keys, which are in your hand! Oh boy, :)

  • Hi chelle !! Your not on your own , I have done many things but I do make myself laugh lol . If I didn't laugh I would cry ! .. Looking for my pen when it was at the back of my ear . So far I have lost the remote to my sound bar , a mug , fallen out of bed 😂😂. Woken up and not even remembering what day it is ! Xmas is next Week and I have done no cards or wrapped a thing ! Insomnia is bad and I struggle to get up ! Yet I seen my dr Friday and my LFT was all good , apart from my vitamin d , so I'm on meds for that Now . Make a diary like I have 😊 Xx Linda xx

  • Ohhh I didn't think of writing a diary! excellent Idea - I shall do that! I always forget what I am meant to talk to the doctors about and a diary is such a simple idea. Good news about your LFT...mines good too normally which isn't a good thing as I lull the Drs into a false sense of security because I go on to full on shut down mode and my body stops working. So here's to the diary and not writing Christmas cards!!

  • Hi chelle, God I was a nightmare with H.E I would get remotes confused with mobiles, walk in and out of rooms looking for nothing, my husband had to dress me half the time because I would of gone out in my underwear... as scary as it was for him we had a sense of humour over it all....

    At times I was 6*20 mls of lactose I definitely couldn't go out but it does keep the dreaded brain fog at bay...

    Am not sure if your a car driver but if you are you may have to stop soon I know all people I know who suffered with H.E had their's taken off them. ( sorry to be bearer of bad news) but it's not safe for you or anyone else x hope you improve soon

  • I spoke to the Drs and I am only Grade 1 of HE if I get to 3/4 I have to stop driving, it is what it is and were deal with that as everyone else has done. I do laugh at myself as everyone else does, Like you say you'd cry otherwise xx

    P.S hope your feeling better now xx

  • I never even knew they graded H.E that's definitely a new one for me lol fingers crossed then you don't get any worse.

    I not bad thanks just realising recovery is as knackering as bloody cirrhosis lol x

  • Chelle-PV, Sounds like H.E. - I have had the experience of "acute H.E." - it (H.E.) of course affects everyone in different ways, I do not know about the onset or development of H.E. but know if you have it strongly, driving and work are totally impossible. (talk to your specialists, and try to suss out if they are understanding H.E. in general and your H.E. in particular.)

    Rifaxomin is the drug that helps.

    I will not bore everyone with my stories, suffice it to say this gentle well behaved middle class 5* Gold B&B owner (with reviews about how charming he and his wife are) had 2 run ins with the Police, and one court action regarding a section 5 of breaching the peace! - Proper MAD I was... I could not type a meaningful line of type, nearly every word was mis spelt, with missing or extra letters, unable to dial a phone number, ......My poor family suffered more than me, I had zero inhibitions when it came over me, I mean zero! ... a very strange experience.... (better now 2 years post TX, Freeman Newcastle, Thank you donor and Transplant team etc.)

    I hope few people get as demented as I did, but I do know of a few who do........

    Keep going as best you can! but do beware of driving if things get bad. When my consultant said stop, I was a tad "offended" at first, (but agreed without comment) about 1 month later I realised that he was 100% correct and my feeling of being offended was just my inability to see my true self as I was.

    Cherish your friends and family!

  • What a lovely comment to leave - thank you. I am pleased to hear you are feeling better. I am totally aware of the driving, I do take things easy and take plenty of breaks. I will ask about the Rifaxomin. Thank you and best wishes x

  • Hi Chelle,

    Had mild HE before my recent transplant. Was on lactulose and then in combination with Rifaxamin which really helped. Apparently the Rifaxamin 'mops up' the toxins & the lactulose is a laxative.

    One of the best things post transplant is that the HE is reducing...starting to feel almost human again!! Good luck with it all & brilliant that you are still working!!

  • I think I get more tired than HE sometimes....I do suffer from almost a 'stutter' forgetting my words, but take a deep breath give myself a few seconds and I'm good to go again!

    I hope your feeling better xx

  • In truth still feeling very battered (ended up needing 3 ops over a 4 week stay). It is not supposed to be so bad for everyone.

    For me it felt like you can't get through it, but somehow you do!

    Pre op I was going downhill rapidly, & was having trouble finding my words or talking coherently. I had to give up work about a year ago as I couldn't concentrate & manage the small business I ran. I was sleeping half the day toward the end.

    Now I am feeling sharper again & the light at the end is looking brighter & a bit closer. Keep strong & positive as you can. Initially I was still very tired but this seems to be easing......took my granddaughter to feed the ducks this pm. So it's got to be worth the fight!!

  • That lactolouse is funny old gear if with me I don't hit the toilet straight away wiv that stuff I tend to lose the moment so to speak also it don't seem to do alot for the head they've just put me on rifamaxin and after a couple of dodgy days so to speak I think they're starting to work along with the lac but I've noticed if u stop the lacto it totally messes up your going to the loo so gotta stay on it but u should try them rifamaxin stay good bri xx

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