I was diagnosed with PBC 3 years ago. I’m been very fortunate that I’ve not had many issues yet. A coupe of days ago, I was sitting at work and experienced an extreme bout of confusion & brain fog. I just couldn’t function. It only lasted a couple of hours, but was very unsettling. Has anyone else had this experience? I’m not sure if it was PBC related or not?
Thank you!
Hello Haffull and welcome here. It's good you are signed up to PBC F, you will get only the totally reliable info there, they are all over PBC and skilled at supporting us with the best of what we need, including this site where you can get rid of the feeling that you are alone with this. I'm sure you already know that symptoms, no matter if severe, do not equate with a progression of PBC. I had brain fog at work but so did several of my colleagues from time to time (!) and they didn't have PBC. (I'm retired now and fog may be worse but I don't experience it as such because I am under no pressure). Relax and wait for a response from a number of people who will make this feel less of a problem, because they are experiencing the same, and they are ok. Keep us informed how you get on? And you will know if this episode is something you need to tell your doctor about. I would tell mine, even if just to keep them in touch with my journey.
Forgot to add that I was referred to neurologist with a number of symptoms, incl fog. Resulting blood tests showed me insufficient or deficient of B12 and Vit D. I have regular intra muscular shots of hydroxycobalamin (B12) and this had dramatic effect - improved cognitive function, more physical energy. Took about 2 days to be effective.
Thank you! I sent a message to my doctor. I don’t know if I can blame this on PBC or not? Thankfully, it’s only happened once, but I’m logging it just in case I see a pattern. I’m taking several vitamins advised by my doctor... including B1 and calcium with D. I’ll have to ask him about B12. Thanks so much for sharing our experience! Very helpful!
We, anyone, won't know for sure if it is a PBC symptom only a likelihood. There are other causes of the symptoms seen in people with PBC. Whatever the cause, the symptom can be addressed in the way you decide for yourself or with your doctor.
It can be quiet on here at weekends, but soon others will tell you their experience of brain fog and how it is managed by them. It can be worrying at first but after a while you will get used to it and it will become just a new norm. That will help you too, because PBC is very sensitive to worry. Better to focus on wellness, managing, and rolling with this PBC variety show that we all find ourselves in. We'll grow to accept a lot of "not knowing" because a lot of it is simply not known yet. And doctors often don't know what they could know.
Have you read about Vitamin K being important to take for many people taking Vitamin D supplement? There is quite a bit of interesting stuff on this site and off about the usefulness of this.
You can have your doctor test your blood for B12 levels to see if you actually need to supplement.
If you take a multivitamin, there should be K in it so you are fine. Also K can be found in green, leafy veggies such as Kale.
I had labs two months ago and started B12 injections and Vitamin D injections so far good just the nerve wrecking itching☹
I was refused vit D injections. So I bought a uvb unit and treat myself to a therapeutic exposure of just under 2 minutes every other day for 8 weeks, then nothing for 8 weeks. I didn't want to take the vit D capsules - they gave me cramps, were constipating and still didn't raise my blood levels. I now have a spray of D inside my cheek. But I would have liked the injections more. Do they cause any problems local to injection site or itching? And what was reason you had injection, not tablet?
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I had low vitamin D from lab so my internal medicine doctor recommended them after I got okay from my hepatolist. I received on injection per month for four months then none for a year. I only experienced constipation. I hope this works for me as I prefer injections over trying to remember to take a pill everyday. My itching is due to my PBC and I've tried everything with no relief.
Thank you for your reply. It really helps to know other peoples experience. I hope you continue well with yours.
The only thing that stopped my itching was generic Atarax. It was a miracle for me. My doc is awesome. In fact I still take it occasionally when I can’t relax enough to fall asleep. You should ask your doctor what he thinks.
Thank you I'm going to mention to my hepatologist 😉 I'm so miserable from itching and nerves I lost my nephew last month and my sister 7 months ago😪 I'm supposed to be taking Xanax as needed but I don't because they make me tired even lowest dosage. I should probably get back on anti anxiety pills I took four years ago when my mom passed and another sister passed 3 months apart. Life is hard I just keep my faith 🙏
Gen, wow. So you’re not only dealing with traumatic life events, your itching is probably becoming debilitating. When you see your doctor about trying Atarax for itching, I would make sure and tell him about your losses. I am on the antidepressant Celexa and it’s made great improvement on not only my depression, but also my anxiety. Once you get a handle on the itching and anxiety, your stress will be greatly relieved. It’s not fair is it, having all this extra stuff on top of everything else we have to deal with PBC. I think it’s so therapeutic to know there are others with this disease that can lend an ear or encouragement.
I posted some time ago about two incidents of brain fog as described by you. Two hours of fug and then as normal. Last time I was in another country alone so took myself to hospital worrying there was more to come. A stroke perhaps . I have come to believe, nay hope , that this IS pbc related , the alternative is far worse. I feel as I age (68) my brain is less sharp and I can live with that but that two hours of a slight bewilderment with no other outcomes tells me what?
To fear For what May lie ahead or attribute possibly to pbc . I do so now and hope I can leave it there
Thank you! It’s interesting that you mention stroke, because that is what went through my mind. It was very unsettling. For now, I’ll try to eat right & take care of myself... and wait to hear what my doctor says. You’ve been very helpful!
Haffull, if you go to her interesting post that boneytoys mentions here, and read the thread, butterflyEi points to a possible question between A D E and K being fat soluble vitamins. This perhaps explains why we may be deficient despite good diets: our livers struggle with processing fats? I had no benefit from B12 that passed thro gut, only the intra muscular shots.
Brain fog is common with PBC. Since our livers do not clear the toxins efficiently, ammonia builds up and goes to the brain, resulting in this issue. Your doc might prescribe lactulose to help you go the washroom more frequently (3-6 x/day). Although that is an annoyance, it does help to clear some of the ammonia. Rifaximin can also be prescribed. My husband, who has the PBC, finally had to go on disability because of the extreme fatigue and brain fog. He has been on lactulose for a couple of years and just recently added in the rifaximin. There are many days where he has to stay close to the washroom, but that is the price of trying to keep his ammonia levels down. If levels get way to high, it is very dangerous. Your doc can do blood tests to determine your ammonia levels. As mentioned above, Vitamin deficiency in A,D, E, and K are common as they are fat-soluble and PBCers have difficulty processing fats. As always, talk to your doc about all of this. Wishing you the best...
I always assumed the brain fog lasted much longer. I suppose there are no time limits or restrictions. After reading all this great information, I understand the importance of a healthy diet & will do my best to make healthy choices. I’m very grateful to you & this group! You’ve all been very helpful! Thank you!
Yes i’ve had it and was treated in the hospital with lactulose, the ammonia level went down and I was ok, one of the gastros advised me to start taking Rifaxin 550 , waiting to see a liver group in NY and ask him
Keep an eye on your ammonia level it’s imp that you are moving your bowels everyday .
Same here. My brain fog is from PBC due to high ammonia levels to the brain. I take xifaxin (on the pharmaceutical company program of pay no more than $10). I also try to take laclulose, but it nauseates me. The main thing is to not let yourself get constipated. Wish your the best.
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