In the past few days I've been increasingly experiencing fatigue/brain fog. I decided to explore ammonia on the brain and this is what I found. I realize most PBCers don't have AIH, but some of us have fatty liver. Evidently, this can be prevented to some extent if you start working on early prevention. I believe my problem was caused from the Autoimmune Hepatitis attack, but no doctor ever told me what I needed to do except take the drugs. I would again recommend eating properly to remove toxins from your liver and try to avoid toxic substances whenever possible.
Here is the message: Loss of brain function - liver disease-
Cause:
An important job of the liver is to make toxic substances in the body harmless. These substances may be made by the body, such as ammonia. Or they may be substances that you take in, such as medicines.
When the liver is damaged, these "poisons" can build up in the bloodstream and affect the function of the nervous system. The result may be hepatic encephalopathy.
This problem can occur suddenly and you may become ill very quickly. Causes include:
Hepatitis B infection (uncommon to occur this way),
Blockage of blood supply to the liver,
Poisoning by different toxins or medicines.
More often, the problem develops in people with chronic liver damage. Cirrhosis is the end result of chronic liver damage. Common causes of chronic liver disease in the United States are:
Chronic hepatitis B or hepatitis C infection,
Alcohol abuse,
Autoimmune hepatitis,
Bile duct disorders,
Some medicines,
Nonalcoholic fatty liver disease (NAFLD), and nonalcoholic steatohepatitis (NASH).
Once you have liver damage, episodes of worsening brain function may be triggered by:
Body is low on water or fluids,
Eating too much protein,
Low potassium or sodium levels,
Bleeding from the intestines, stomach, or esophagus,
Infections
Kidney problems,
Low oxygen levels in the body,
Shunt placement or complications
from Surgery,
Narcotic pain or sedative medicines.
Disorders that can appear similar to hepatic encephalopathy include:
Alcohol intoxication,
Alcohol withdrawal,
Bleeding under the skull,
Brain disorder caused by lack of Vitamin B1.
In some cases, hepatic encephalopathy is a short-term problem that can be corrected. It may also occur as part of a chronic problem from liver disease that gets worse over time.
The doctors are busy and they don't know too much about our disease anyway. We need to get educated about our disease, set up a liver-healthy lifestyle and then try to live as normal a life as possible.
I was not told about this by my specialist . It may be relating to advanced liver conditions drinking lots of water will help stop being hydrated . I prefer to get my information from the specialist rather than the internet unless it’s through the PBC foundation .
A recent study has shown that 'brain changes' (brain fog) can manifest during the early stages of PBC. As with all PBC symptoms, this particular one does not correlate with LFTs or stages.
I don't think I ever had the brain fog before now. I call it brain fog because when I get it I cannot function and I HAVE to lie down. I'm glad I never had it when I was young and working.
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I've been struggling with 'brain fog' (Hepatic Encephalopthy) for quite a few years now - it got so bad that I had to resign from my teaching job at the University. Even though I am on medication for this I am still having some issues - fatigue seems to make it worse, and as I am in Stage 4 extreme fatigue is a constant.
Dianne I tried to read the scientific study you posted. It is not conclusive . There are many maybes and could be’s . I am not a trained physician that I could understand the article that you sent. I personally think it much better to talk to a trained hepatologist or in my case ,professor rather than us try to analyse these studies , you may be able to dissect the information but I cannot . I also think that it could be very alarming and frightening for some of us to read these things without a professional to make sense of it .One paragraph that did seem to make sense was that Urso If it works can stop the brain fog fir some. I am in very early stage PBC and the Urso has brought my three abnormal l f t s back down to normal.
I totally appreciate that fatigue, lack of sleep can be very detrimental to us and quality of life for those that sadly suffer with these side effects.
I will show my professor the scientific study you sent me and see what he thinks .it will interesting that get his feed back.
You are correct, it is advisable to speak to your specialist as he knows you, and your particular circumstances - we are all different and therefore have different needs/requirements.
One thing to remember though, not everyone experiences all the symptoms associated with PBC - I for one, have been among the lucky ones who have not really experienced Puritus (only had the odd bout of it). Fatigue on the other hand, has been my constant since first diagnosed 29 years ago. It has only been since moving into Stage 4 that many of the other PBC symptoms have begun to appear, brain fog included.
My aim in posting the above article was to show that 'brain fog' does not always manifest only in the later stages - this particular article has been used by other early stage PBC patients (cited in a couple of PBC support groups) who are experiencing, what they call 'brain fog'. It has prompted their specialists to, not automatically dismiss their concerns, but to carry out further investigations.
"Knowledge is power" is my motto - knowing as much as I possibly can about PBC (the good and the scary) has given me the perception of having some kind of control over it.
Thank you Diane for your valid comments. I must say I also developed brain fog after trying to decipher the scientific study for C N S with early stage PBC. It seems it may be from excessive manganese in the brain which can cause central nerve disease . A very frightening read especially the terrible effects of CNS . Although it says it’s more likely if one suffers from severe Fatigue so the article states.Of course that is also if I have understood the study correctly ,seeing as I do not have the relevent expertise to analyse this in depth report.!!
I found it very scary and as I said before I will show it tomy professor for his input. I always feel stronger and positivel and very hopeful after I have spoken with him and taken his knowledge and advice.I prefer to go to my Professor than read things that I cannot correctly understand on the internet. That’s just me though. We are all different .
I’m 63 I get a little tired at times . My memory is not quite as fantastic as it was I’m not the girl I used the be but i seem to keep up fairly well. I don’t look my age I get foggy times but I just put that down to natural events and age. I still dance with the best of them long may it last
Ha, the photo 😊 it was taken about 5 years ago, and just happened to be a very good one (I usually have the 'camera face') - I use it everywhere a photo is required. 😁.
I'm 72 and love to dance as well, haven't been doing much lately as I have the 'heel spur' thing happening.
Dancing is wonderful . I have always danced. I’m sure you still look great . A pretty face is always a pretty face x
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For DianneS regarding brain fog: Do you also have Autoimmune Hepatitis? I've been thinking. You have the debilitating kind of brain fog and I don't. I've read where some pcers have lost their jobs and on disability or maybe fighting for disability caused from brain fog or fatigue. Some doctors believe it's pbc related and others don't. You said fatigue makes it worse and I thought it caused fatigue. I've had it a few times and yes, it's the brain-dead effect, but then it's gone. It's the same way with my Sjogrens, itching or any of my symptoms as they will come and go. I know we're all different, but I can't figure out why?? I have about a dozen autoimmune issues and that may figure into the inconsistencies, but I think there has to be a common trigger. Do you have any idea or has anyone in the medical field ever told you about that? What medications do you take for Brain Fog?
I just read it could be toxins in the blood. That's what I've been working on for myself, detoxing my liver, which should have the same results. Do you believe that is the only or direct cause?
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No, I don't have AIH.
Fatigue was my first indication that something was wrong, it is why I went to my doctor in the first place - it took two years for a diagnosis.
Over the years my fatigue has been my main symptom, but I have been able to manage it. That was until about 7 years ago, now the fatigue manages me. 🤐
From what I've experienced there is no rhyme or reason we have these flare ups, some put it down to something they've eaten, but for me that has not been the case.
Does your doctor know you are doing liver detoxification? I, personally would not be doing it, as I see detoxing as stressing an already stressed liver. I can't see how detoxing the liver is going to filter out toxins from your blood.
I agree DianneS aboutliver detox...wouldn’t. If we had normal livers it might be ok. There are plenty of foods, fruits we can eat that helps detoxify naturally.
Oh no. I would never use that junk that is sold for detoxing or whatever. I detox with natural organic fruit and vegetables. Like I've said, lemons are great. I juice a lot.
Hi Di, No I don't believe in taking anything for detoxing or cleansing the liver. The liver is not stressed when you detox by eating right. It's nature's way of cleansing the liver. The doctor offered nothing, not even a transfusion and then he retired. I don't think this is PBC because I read with cirrhosis, the liver shrivels up and gets hard. My liver and spleen are both enlarged and my spleen was taking my platelets. I was so upset when I learned you can't replace lost platelets, I decided I'd better try to help myself. It's nothing short of a miracle that I have improved all my liver functions and platelets with only diet and juicing. I'll be having my check-up at the end of this month and will learn then if my platelets are still gaining.
I wrote you because I've been trying to figure out why I have recently been having some issues, now and then, that I have only read about in the past. If it's not PBC, then it must be Sjogrens, but some people say they are one and the same.
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"but some people say they are one and the same." are you saying some people believe PBC and Sjogrens are the same condition? If so they are wrong - there can be a link between them but they are not the same thing. I didn't begin having Sjogrens' symptoms until 20 years after PBC diagnosis
Okay now, I have cirrhosis, and like you, my liver and spleen are both enlarged, but as my liver has been hardening it is slowly shrinking (I know this because they have been measuring it each time I have an ultrasound).
Here in Australia they don't seem to do anything about low platelets until they get to the 'magic' number of 50 x10*9/L (normal range 150-450), mine are now 56, but this may well change as this number fluctuates.
Who told you "you can't replace lost platelets"? You can you know, please read information from the Mayo Clinic, link below.
Thank you Di. Mine were 81 and up to 150 October 24th. I think the doctor said they can't be replaced. Anyway, now that I know I will continue to make my smoothies and hope they keep improving. Thanks again!
Thanks DianneS. I read most of it and will study in depth later on. I don't know why I have to always be different, but I don't remember having "brain fog" before. Years ago my PCP tested me and said I didn't have it. Now I will have it, it will go away and come back days or even weeks later. I've been thinking it is caused from something I ate, but I suppose that's not a trigger?
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No, I think you will find that HE (brain fog) can come and go for quite a while before it begins to be a real issue. I am Stage 4 and still only get bouts of HE - though these bouts have meant that I had to eventually resign from my job. My specialist has prescribed medication for it that appears to be working - as I said earlier, I'm only getting bouts of it.
For me, brain fog means I have cognitive issues (one of the reasons I had to stop lecturing at Uni), sleep reversal (inversion of sleep pattern), the attention span of a gnat, I have no trouble jumbleing up my words. Oh, and maths, I can no longer do maths mentally, in fact, truth be told, using pen and paper for maths can be problematic as well - this last is probably the saddest for me, as I'm a keen knitter and weaver, and maths play an important part of those crafts.
'Brain fog' for others could mean other things.
If we are saying that brain fog is another name for Hepatic Encephalopathy (HE) then there are a number of very good medical websites that explain what HE is. Here is a link to one that I think gives a good (and maybe a positive) explination - one thing to remeber, only a relatively small percentage of PBCers will develope HE.
Thank you Diane . I know brain fog for whatever reason can come eith late stage PBC Or cirrhosis. I hope there is something the specialists can give you to help you.. it must be very hard for you.
I forget the odd thing but I don’t worry about it I think sometimes it’s a bit age related.
I am in very early stage PBC it was caught early my l f t s are normal after being on Urso for three months.
My specialist is so far happy with me.Thanks for the link but I don’t think I will use it . I prefer to speak to my Proff. Thank you anyway.
I wish you well
Miriam x
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Well, you said a lot and thankfully, I don't have it! I don't know what it is that hits me, but like I said, it's during a Sjogren's attack and I will get this terrible feeling that I can no longer function and absolutely must lie down. I've only had it a few times and maybe it won't happen again. Also, I have no problems sleeping.
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I call that ("absolutely must lay down") hitting the wall, something I get daily. I also don't have any problems sleeping - at the moment I'm sleeping from 8pm through to 3.30am. I am asleep within 10 minutes of getting into bed, and I don't hear a thing during that time. Due to the early waking I usually hit the wall around noon and pretty much dose on the lounge until I go to bed - these sleeping patterns have been slowly changing over the last few years, with me getting up earlier and going to bed earlier - hence my sleep reversal comment.
It may well be the Sjogrens with you. I have had Sjogrens for many years and to be honest I'm not sure what you mean about a "Sjogrens attack" as I've not experienced any sudden changes in this particular condition.
Take care
Di
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Hi Di, We are somewhat similar, only you're getting up about the time I'm going to bed. lol
Lately, I've been calling the Sjogren's an attack because it comes out of the clear blue. Any day, any time, doesn't matter what I'm doing, my eyes will suddenly start watering. Sometimes so bad they run down my cheeks and maybe I can't focus and will even get short of breath. If I also get so I can't function, l give up and go to bed. It caused me to cancel an appt. last Thursday and that's the first time for that. My eyes were still watering pretty bad when I saw the Opthamologist and he referred to it as Sjogren's, but I didn't tell him what all it's been doing to me lately.
You are very fortunate to have a physician that knows so much about our disease. Years ago I told my "specialist" I had learned about the drug URSO on the internet and I would like to take it to help with my PBC. He said, "Don't pay any attention to that internet". I left and never went back.
I have found so much information about my autoimmune diseases from resources on the internet, backed by scientific studies and research from all over the world. After nearly thirty years, I understand I am actually fighting for my life as there is no "cure" for PBC or AIH. But, it's not so upsetting once you learn the liver is a very resilient organ and there is so much you can do to help keep your liver well and functional. I was never told I should be pro-active with this disease, but I've always tried to avoid everything I knew might be harmful to my liver. It's a never-ending challenge, but I have regained my platelets, I'm feeling good and that means everything!
Yes I am very lucky to have my professor in the UK . Who has studied this disease . I think some of what we see online can be very upsettIng and frightning especially as we are not trained to understand some of these scientific studies that are as yet inconclusive and full of maybes or might be s . As sent by Dianne S. I could not understand all that was written!!
I am early stage and my ursofalk is working so far so good,
Mirimaur: I drink water 24/7 and I'm low of protein and I am so complicated. I have PBC, AIH, maybe cirrhotic and about a dozen other autoimmune issues. Every day is a new day with a different symptom or NO symptoms. I never know what to expect and shouldn't comment because I am so very different from most PBCers and have nothing to compare to.
The Sjogrens is the worst thing I have ever experienced and the doctors have no advice whatsoever. Symptoms will go away for weeks and then return for no obvious reason. I do well at treating the symptoms, but no clue for prevention.
I know what you mean Tanjah . I seem to have developed runny nose and my eyes are sore and runny. I have different auto immune disease s Poly myalgia . Acne rosacea appeared from m nowhere although it’s practically gone now. My eyes are driving me mad don’t know if it sjoren syndrome and now after reading the article on early PBC Snd brain disorders that Diane shared I feel like I’m losing the will !!!! I was feeling quite happy before. 😩 oh well dear friend onwards and upwards . We will be ok . At least my Urso appears to be working so I count my blessings .
Miriam, I'm sorry you feel like that after reading that article, I didn't post it there to worry, or frighten, people - developing brain fog associated with PBC is not a given, only a possible complication.
I posted it to correct the notion that brain fog (associated with PBC) is limited only to those in later stages, thus hopefully validating the concerns of those in the earlier stages who might be experiencing this issue.
Again I am sorry I have upset you, that was not my intention.
Don’t worry , sometimes it’s just overwhelming . I was just getting used to what I did know about PBC. The part I found disturbing was the cns symptoms . It was so complicated I may haveread it incorrectly .
Thanks Miriam. That is wonderful the urso is working for you and no, I never had the option. I've had pbc for close to thirty years and except for itching now and then, I was asymptomatic. I never felt like I really had pbc until this past year or so when I began to have the symptoms. I'll be feeling great for weeks and then one day we'll sit down to dinner and my eyes will begin to water so badly I can hardly see my plate. Sometimes my nose will run also and my brain will cease to function. That's what I call brain fog and it makes me so furious I just go to bed. What does sitting down to eat have to do with Sjogren's? lol
Last week my opthamologist could not believe how my vision is so good while my Sjogrens is so bad. He was pleased that I'm using Bausch & Lomb eye drops for DRY eyes and told me to up them to four times a day. I also benefit from the warm, wet washrag compress and the facial steamer. I just forget to do them and then my eyes go nuts.
I'm glad your meds are working. I knew very little about pbc for many years, but instinct told me to guard my liver and not to do or take anything that might harm it. I am a survivor and you will be too. We may have a rocky road to follow, but very few people actually die from pbc.
So glad you have done so well Tanjah for thirty years without meds. I also kept a very healthy diet and no alcholol . I have mild damage to my liver and they caught me very early stage. My liver enzymes are all normal since being on Urso for three months. I get an occasional itch if I should have too much sugar it seems. Not too tired thank goodness . If I am it’s usually because I have had a late night.I am sure keeping a healthy weight , exercise when possibly and healthy diet help us.
I looked it up and it sounds great. Imagine, pulling toxins from the blood! I think I'll pass on it for now as I never experience constipation. I haven't had "brain fog" recently, however I will keep it in my notes for possible future use. I'm doing so much better, but you never know with pbc....every day is a new day. Thanks for posting.
"Lactulose
Common brand names: Kristalose, Generlac
LACTULOSE is a laxative derived from lactose. It helps to treat chronic constipation and to treat or prevent hepatic encephalopathy or coma. These are brain disorders that result from liver disease."
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Does anyone of you has problems with ammonia levels?
Brain Fog
What PBC does to your brain - new research
Uncertain
