Just joined up here, so glad to see all kinds of issues addressed re PBC (incl. prognosis; my doc just says "You're healthy"). I am on Ursodiol for the PBC and diuretics (for ascites), and have had one banding experience (for varices) which turned into internal bleeding and blood transfusions. I am feeling pretty good, but I get dizzy quite a bit. Even just sitting in a chair. It usually passes pretty quickly, but I have had several instances where I can barely walk, or look like a drunk I'm listing so much. The only help I've found is to lie down until it passes. Does anyone know if this is a cause of the PBC disease, or the meds, or ?? Or have you had this experience?
Many thanks.
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meginaromas
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I also have Ménière’s disease which causes vertigo, tinnitus and deafness. So I can really sympathise with you, it’s so debilitating. Perhaps ask your GP about that. Xxx. Good luck.
I have had similar experiences to those you describe. The worst event left me feeling nauseous, dizzy and in bed for over 24hours. I have used the Epley manoeuvre (examples can be found on You Tube) but I also went to the doctor who suggested that when I have an event to try motion sickness tablets which in the UK can be purchased over the counter. You may want to run it past your specialist just to check that any over the counter meds you try are suitable for you.
I had some dizziness for a spell. Not sure how old you are but it is common in menopause. I quite often think menopause symptoms get confused with some of the issues of PBC. If you are too young for that I would speak to your doctor. A younger friend of mine had crippling dizzy spells and she was diagnosed with BPPV (sometimes known as crystal sickness).
I have been having dizzy spells for about a month and wasn’t sure what was causing it but now I know it’s something we can get. Didn’t want to go to the doctor as I always seem to be there.
I've been diagnosed 30+ years and began having dizzy spells similar to those that you are describing about 3 years ago. At first I was only experiencing them at odd times but about 18 months ago they became regular and seemed to occur around the same time each day. After the 'self diagnosis' that we all do, I decided my dizzy spells were triggered either by a drop in blood sugar, or a drop in my blood pressure.
I wasn't that far off. After discussing things with my GP she advised me to drop one of the blood pressure medications I was taking - I was taking three different blood pressure medications due to cardiac issues and varicie bandings. While I still get the dizzy spells, they are very, very mild, and very, very rare.
So for me it was the blood pressure medications causing the dizziness, but that doesn't mean it is the same for everyone. You really need to discuss this with your doctor/specialist so that you can get the correct diagnosis.
For me it was coupled with nausea that came from increasing my Urso at one point. I had to use Scolpomine patches to be in a car while it was moving at all. When we cut my Urso back to what it had been, the dizziness and nausea subsided. I hope that you find out what helps you.
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Does anyone know if URSO would br prescribed to someone with advanced stage PBC at diagnosis?
Should I mentally prepare for the possibility..?
PBC
PBC and diet
