pbc and dizziness

[nancystreit]

I have been treated for pbc for a year now. The fatigue remains very limiting but my biggest complaint is dizziness. One cause is that my blood pressure is too low and I take medication for that. Even when my blood pressure is OK, I feel a pressure or dizziness or tightness in my head. Can anyone relate to that?

[butterflyEi]

Hi nancystreit

I have suffered several bouts of dizziness but was not sure it was PBC related as my mother used to suffer with something similar and she did not have PBC. I investigated the Epley manoeuvre which I managed to do on my own however I suspect if you have a practioner who can do it for you it would be better. If you google the Epley manoeuvre you will find it well covered there are also video clips which will help you decide if it it more ear canal imbalance related rather than the PBC.

I find if I turn over in bed to quickly I will get a very weird sensation and that sets the dizziness off again. I have also found it is worse at times of greater stress.

I hope this will be of some help to you, it is a different avenue to explore but not necessarily the answer to your problem. Perhaps you could talk to your GP about it for greater clarity.

best wishes, hope you get it sorted.

[Hidden]

Hello nancystreit.

Not sure about this dizziness being PBC-related but by you saying you had low blood pressure I think that might have something to do with it.

[liver-bird]

Yes I get this but put it down to middle ear problems. Sometimes worse than others, did not think it is pbc related, but who knows?

[Wendy29]

I have had low blood pressure all my life and over the years since I was a child I would have bouts of passing out - and dizziness particularly at times of angst and stress - it really affected me badly when my dad was very ill. However since I have been taking medication (steroids) for my AIH/PBS it has raised the blood pressure. However occasionally my BP still dips and I feel dizzy. I don't think it has anything to do with the PBC.

[Shirleygreen]

hi yes I can its awful and i am currently suffering from it. But i think it has something to do with my eyes, my blood pressure is also low but not by much. At the moment the lightheadedness is causing me anxiety as I am battling to go out on my own in case i fall over. sending best wishes ps I also have very high anxiety issues at the moment which i guess is not helping. I am waiting to get help with my eyes at the moment i have just been told i have a prism in one eye which is apparently causing my eyesight to be very strange to say the least which is making my anxiety worse. I hope u feel better soon

[cazz22]

Hello.your dizziness is interesting to me.i used to suffer badly with it aged37 and mostly in bed at night when the whole room would turn.i was x rayed for arthritis put on beds in darkened rooms and water pumped into my ears.all they could tell me was that I definitely suffered from dizziness.they could tell by how I controlled it.thankfully that shocking episode left me except for times of stress/illness when I get it very mildly.fibromyalgiaa was once mentioned tho when I went back to my gp the consultant had written.the only thing this lady is in danger from is getting better.sort of lost faith in the medical practise after that.i know wonder if it was a precursor to pbc

I sincerely hope you feel better soon-it's not a nice feeling

[nancystreit in reply to cazz22]

Dizziness such as you describe is usually a benign inner ear difficulty associated with position of lying down and is called benign positional vertigo of Barany. It does not feel benign but it means it will not progress to something worse. Good luck.

[Hidden]

I feel for anyone who suffers with any degree of dizziness, its so easy to say but it's the most awful thing to deal with. I could write a book about my experience that lasted nearly 2 years, but I knew it was not the PBC or anxiety in my case.

I agree anxiety can be a cause but I just knew the dizziness I was suffering was causing my anxiety not the other way round I just knew something was wrong with my ears or eyes or both. Gp said I was hypersensitive to normal movement and go home and rest and there was nothing wrong with me or my ears. It was only going to OH at work after having more time off that I got a referral to ENT.

Gp was still reluctant but obliged what joy when I went back to tell him I told you so. I needed surgery, and since then thankfully I've not been dizzy at all, my hearing and balance are not great when the ear needs cleaning but what a relief and the skill of ENT surgeon will stay with me always he gave me back my life it was so disabling to suffer almost daily. So my personal advice would be push for a clear diagnosis if your in any doubt about its cause. Shirlygreen have you had yours ears checked my eyes were very sensitive to movement and light , as they tried to compensate for the loss of balance due to the inner ear damage.

[CindiA]

Hello,

It sounds like hepatic encephalopathy, which has to do with high ammonia levels. I take Lactulose and Xifaxin for that. Do you get copies of your lab tests? It will show on that if your ammonia levels are high.

Do you see a liver specialist (hepatologist)? Please do. One of my doctor's at Mayo told me they can't treat cirrhosis, they can only treat the symptoms of cirrhosis. But at least they know what they are doing much better than pcp's (primary care providers).

Good luck!

cindiA,

diagnosed with pbc in 1996 & on UNOS transplant list through Mayo-AZ, since 2008. I'm 60 now, and will probably not get a liver because my MELD score is still too low, but I will make it as long as I can!

[sap7649 in reply to CindiA]

Cindi a

Do u ever have issues with bruising or skin rashes?

Sap

[nancystreit in reply to sap7649]

I do not, but skin bruising can be due to the liver problem. It can be checked with a test called a protime. That is usually a fairly routine blood test done on patients who have a liver problem.

[CindiA in reply to sap7649]

Hi, sorry I thought I had replied. I bruise all the time and sometimes I get itchy rashes, usually on my hands and wrists. My pcp gave me an ointment for it.

Cindi

[KD60]

I agree with CindiA that it can be pbc related. When I had really bad dizziness I was also experiencing a chemical reaction to everything I touched, paper, metal, new clothing - tons of stuff. I was in pretty bad shape with the brain fog etc. I almost had to quit work. I felt like I was drugged or something. After I went through a naturopathic liver cleanse, and started taking herbal suppliments for my liver as well as increasing my minerals and vitamins especially magnesium the debiiitating symptoms started to disappear. I feel pretty normal now, 5 years later. I still take a boat load of natural supplements but my liver enzyme levels are only slightly elevated and are the best they have been in 5 years. I only take the urso when I can feel things are plugging up or I have pain. I only experience that when I eat refined foods. You can get better. I refuse to believe that pbc is a death sentence.

[nancystreit in reply to KD60]

I would really recommend you take the ursodiol since it stops the disease from progressing. I also feel the "brain fog" and forget things someone just said to me and have trouble when I feel worse at finding the word I want to use. Had my brain checked and it is OK by all tests.

[sap7649]

I don't get dizzy has anyone experienced skin rash or bruising which makes the skin appear bruised. Is this some type of deficiency or poor circulation

[nancystreit in reply to sap7649]

Skin bruising can be a sign of a liver problem which is checked fairly routinely with a blood test called a protime (prothrombin time).

[sap7649 in reply to nancystreit]

Hi, thank you for responding I had my protime checked and iron they both came. Back normal.

Sap7649

[Jojowen]

Hi, are you on prednisolon? Apparently it can make you dizzy.

Feel better!

J

[nancystreit]

No prednisone. thanks.

[PCBnPBC]

Dizziness, Balance, blood pressure.

I had transplant Nov 2014

before that I had balance and dizziness isues (amongst many others!)

Prof Jones at Freeman (world leader in PBC) explained to me there is a receptor in your neck, its job is to suss out when blood pressure is low, and if too low activates closing of the veins and increase of blood pressure (heart rate increase) to compensate. This in a normal person!

For us special people (PBC-ers) this sensor can fail or have signals confused by body and we fail to perform these important functions, which can lead to dizziness, feinting or in my more extreme case what appeared like a stroke, the medics rushed me to ITC where they were confused, as my symptoms suddenly changed and they were pretty sure it was not a stroke, which Prof Jones after many tests was sure to be the case.

DO not take this advice and if stroke like symptoms occour, relax and say Charlie said this was PBC !! , react like it is a stroke!! it might be!! but this may help explain some of the symptoms others are describing??

[Shirleygreen]

Candy12 thanks for your suggestion if it carries on after i have my eyes checked will ask for referral to ENTx