PBC Foundation
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Just wanted to ask if anybody 's head feels in a daze it's just like I have lost all concentration it's not all the time it come's and go's my eye's also feel blurred I have just had an eye test and the optician says my sight is ok and my eye's look healthy so nothing to do with them.It doe's worry me because I don't feel alert this can happen any time of day even after having a good night's sleep so it's not that I am tired.I have started to feel a little un safe when I am on my own.I also take Questran light can you tell me if when you take it do you have to take it every day else will the itching come back if you miss a few day's.Also even when your Liver test's are near normal can you still get the itching,sorry for all the question's all in post.Take Care x

17 Replies

I don't take questran as my GP has not suggested it ( they are cutting back on expenses bless em )

But I do lose concentration and my eyes do go blurry, and also I get like white clouds in them limiting my sight for a minuet or 3.

I don't know that it is related though, I will ask my consultant next time I go

XX Linda


Yes, I get the "dizzies" just for a moment or 2. With my eyes sometimes I have to blink 2 or 3 times to make things clear. both are rather un-nerving. It cannot be related to the Questran because I have never taken it - tho have just asked my Dr. about getting it for "internal troubles".

Maybe some others can help us here, hmmmm??

Also, as a side note - tho' I have AIH with PBC overlap I have never had the itching and It seems most of the ones on here do? Have I maybe been misdiagnosed???? Guess it is something to ask my Dr.


I also get 'the dizzies' and have the same trouble with my eyes. I don't take Questran so it can't be that. Like you my optician says my eyes are OK and healthy. Have always taken it for granted that these are yet another side effect of PBC.


I get this too, and am on different meds for itching. I actually can drop off to sleep at the click of your fingers, which as you can probably realise it can be very dangerous, I don't really get any real warning of it so I'm rarely left alone by my family now, it's happened once while I was driving, luckily there wasn't much traffic and I didn't hit anything. I also get to a point where I go to sleep and don't wake up for anything from 24-48 hours. This used to really worry me and my family, but after speaking to my specialist, he told me it is part of my illness. I'm quite advanced with PBC as I'm now showing all the signs of having cirrhosis of my liver now.


Hi Tumbleweed, I was diagnosed in Dundee in 2008 with PBC, I moved north and the new consultant questioned the diagnosis (although he was not a gastroenterologist - you take what you can get here !!) April this year, I actually saw my consultant in Inverness who now believes it to be PBC - AIH overlap, and since then have been on prednisolone and Mercaptopurine (prednisolone are steroids) had I not had the AIH overlap the steroids would not have worked. I am not allowed a biopsy as I bleed internally for Britain !! And also like you I have never had the itching either. The steroids caused me to have blurry vision, ut since cutting them down that has improved.


I get the dazed/dizzies quite a lot and have eye trouble as well; blurred eyesight,cant focus etc. Optician said my eyes looked healthy. I don't take questran either. Beginning of this year I officially developed dry eyes and have eye drops but my eyesight is no better and in the last month Ive started with double vision as well.

I was given hydroxychloroquine for inflammatory arthritis and this has helped to clear the "brain fog" but I still struggle with it at times.

I think its all part of PBC - but go and see your doctor if your worried.


Well I have to say I actually do not go dizzy or feel dazed but my concentration can and does start waning later in the day if I had a night where I was itching and didn't get adequate sleep.

I'm only on urso but I suppose it depends what meds one is on as some can make you disorientated or dizzy.

I sometimes find I forget the odd thing but I think that is now down to the fact I am in perimenopause as it is known so a yr or slightly more I'll have gone through the menopause.

I think modern living plays a big part in forgetting things or doing odd things. We seem to spend a lot of time these days having to run round for even our 'pay packet' these days as it is deposited in a bank (and in my husband's case recently a mess up with the computer system and he had to be paid by another method so that ultimately caused a few hours at home rearranging certain bills, etc). We have far more household bills than my parents ever had when they'd receive income by cash for working every week and then pay whatever bill came in. Back then here in England anyway we just had one gas supplier and one electricity supplier so no-one seemed to have to be revising up and calculating which energy company was best to use, etc.

Where I live is still in the same area I grew up. Long gone are the local shops where you didn't have to venture to town unless you had to pay General Rate, electricity or gas bills or use a bank and supermarkets might have almost everything under one roof but for me in particular I find them quite a challenge, getting into the store and then spending absolutely ages checking and re-checking price tickets as can guarantee if I was to bet on it I'd be rich now, at least one price never matches what it said on the shelf as old tickets and on special offer no more!

That's my view anyway. I know I'm not worried about the odd bit of forgetfulness as out of the 101 things to remember it is only usually 1 but if I ever was concerned I'd definitely want to seek the advice of a professional.

On a lighter note, my son who has just gone 25, he is hopeless when it comes to not doing things. Simple things to make life easier but you can guarantee as he still lives at home it is me who normally has to do what he has 'forgotten'. I gave up long since in keep saying to replace a towel in the bathroom if he's used it and various other things so no wonder I have said '101 things to remember'!


I am 'dazed' most of the time. My memory is shocking and I think it might be getting worse. If I read something, I have forgotten the start of the page by the time I get to the end. An example of my memory - when I come back here tomorrow. I will have to check all my own responses because I will have no memory of having read the question or writing an answer!

I have struggled with reading but I don't really know if it's my eyes or my dazed, fuzzy head. - it's probably both.

I don't take Questran unless I have periods of serious, sustained itching. I am luckier than many in that the itching with me is very sporadic - intense when it comes but thankfully it's not too regular. Questran seems to work for me if I just take it when I need it but it doesn't work the minute I take it. It would take a few doses for me to get any relief.

I have also seen people saying that half a lemon squeezed into a glass of warm water in the morning helps itching a lot. I haven't tried it yet - waiting for the itching to hit me before I 'test' it.


Hi, I get very little itching but my eyesight is getting bad. When I last went for an eyesight test I was told that my tears were breaking up and that I had to get viscotears. These help greatly. I am also plagued with a very dry mouth and skin. GP not sure if its my age or if it is caused by PBC. Regarding the fuzzy head, yes I suffer from a fuzzy head, poor concentration and on bad days cant remember words for simple things. Very frustrating!


Hi, Are you on Urso? When I was on the Urso my brain seemed to turn to mush, I couldn't do my job, I felt I was going mad, I began to feel really unwell, very bad stomach problems and bad diarhea, I was so bad I couldn't take my meds and within 24 hours the difference was amazing, I restarted my Urso and again within 24 hours I was as bad as ever, I stopped taking the Urso and I've never looked back, my LFT's are normal and I've not taken it for over a year now, my doctors are aware I don't take it, unfortunately my consultant treats the illness and not the person and dosn't beleive it was the urso causing the problems, I know better,fortunately I see a different consultant later this month,so we will see what she says, I'll keep you all posted.


I have been on Urso for 6 years and just this year I tried to get off of it and my numbers shot up. It never occured to me until now but I don't remember having the "loose bowels" during the time that I was off. Now I'm back on and again the running for the bathroom. It seems we take medication to combat the side effects of the medications. -:(

I got my new prescription for the Questran (generic is "cholestyramine") so will start it tomorrow and see what happens. Dr. gave me 1 dose daily for 30 days.


I have been taking Questran for over 2 years now, and unfortunatly if I miss a few days the itching does return. My consultant has told me a couple of days is ok to miss but no more than that. Hope this helps.


Hello cavi.

I am struggling to follow this site and thought I had read your question when I previously posted a reply but I must have missed a bit! (Ironic really given you started with memory!)

As I see it anyway, I somehow don't think the itching will cease if LFTs return to a normal level and continue that way. Hate to sounds so depressing there as I too itch at night. Mine has improved these last almost 3yrs on taking urso but since April I've been taking milk thistle. I am now just taking milk thistle every other day and have to say I feel better and think for me at present that is the best way. I still take the urso as normal. I had been finding prior to taking milk thistle the urso was making me constipated quite a bit but on using milk thistle I seemed to revert back to normal, how I was prior to diagose, pretty ok, no constipation/diarrhoea as never had a problem. After 2 months on milk thistle I was suddenly finding that I was a bit looser than normal so I decided it was possibly due to urso and milk thistle so I decided to give it a go at milk thistle every other day. I am finding that seems best, feel normal again.

Back to the itching, I think that perhaps due to some bile duct damage it might not be a case we can ever wipe out the itch now butI suppose we'll only know if our LFTs become what are considered normal again. I have resolved myself to the fact I might never cease itching. I'm currently a lot better than I was and I can only hope that perhaps it will slowly vanish but at the same time know that it might not be permanent as we never know what the future might hold now we have PBC.


Thank you all for helping to answer my question's it really help's to know we are all here for each other and some of us are getting the same symptom's and don't feel alone what is happening to our body.I will tomorrow face another day like we all have to and cope with what ever it may bring what else can we do.Take Care to my friend's I never see xx


I also take Milk Thistle and never "connected" it with the loose bowels. I am taking 6000mg/day at present and I had increased it about a year ago from 4000mg. I may just back it down and see what happens. It would be so much better than having to take another medicine. Thank you so much for this glimmer of hope. -:)


Hello Tumbleweed41.

Well I can assure you that since I started taking the milk thistle every other day I have found that I no longer have looser bowel motions but by not taking it I find the urso can and does cause constipation which I was never prone to prior to starting on the urso Dec 2010. I am finding that this works better.

I have just checked out online the ones I am using from Nature's Best here in England. States:-

ACTIVE INGREDIENT: Each film-coated tablet contains 150mg of standardised extract from Milk Thistle fruits (Silybum marianum) (equivalent to 3600-4050mg of Milk Thistle fruits) corresponding to 87mg of silymarin, calculated as silibinin.

Hope this helps.


Hi Cavi I have dry eyes and mouth a lot and poor concentration sometimes and can be quite forgetful. I use an eye spray for the eyes and salivadex losengers for the dry mouth if haven't got a bottle of water to hand though I do try to drink a litre of water a day if not two. I have beeen on the Questran Light for many yrs and do find if I miss it the itch is bad. Thankfully these days though a dose of Questran before and one after breakfast keeps the itch well controlled during the day at least. Night time varies some nights waken once other nights 2 or 3 times with it I usually take another 1/2 Questran in the night if it is bad and go to toilet and think the moving about helps. Hope that info helps. Bfn.


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