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Dizziness

Does anyone know what causes dizziness? Or whether it is just a symptom of pbc.

I’ve been experiencing a lot of dizziness the last few months. It’s horrible and usually feel disoriented and then very drained. I’ve tried adjusting diet but nothing seems to really make a difference. Doctor has tried various blood tests to see if there’s anything that could be causing it but they all came back normal.

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My hepatologist says sometimes allergies cause that due to inner ear imbalance. He doesn't think it is pbc related.

Told me to take sudafed for a week to drain the water from ears. & if it continued to go get it checked out by ENT (ears, nose, throat) specialist.

For me I had just came back from a cruise plus I then acquired a cold. The dizziness lasted a month. It went away so I didn't follow up with ENT.

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Thanks

She said she thought it was related to my ears although I can’t say I’ve noticed anything with my hearing. Not to say there not something there though. It’s been coming and going for a while and although most of the time I can carry on while most of the time I can carry on as normal. Other times it seems to drain me of all energy.

Glad it cleared up for you. Hopefully I’ll be the same.

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You can't really feel it in the ears. It is in the inner ear canal. There is a medical term for this type of dizziness. I can't remember the name.

I once had a spell so debilitating that I felt dizzy even lying down. That caused nausea & I couldn't keep anything in stomach. I went to the medical department at work & the doctor there gave me antivert for the dizziness & ginger ale for the nausea.

I called my hepatologist while I was resting in Medical to get his approval to take the meds. He thought I might have had a virus on that occasion.

But it definitely sucks (excuse my language). 🙁

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Doctors call it Vertigo and Antivert is usually prescribed. It doesn't always work.

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Thx. Every now & then I have an episode. Don't know why. I've taken antivert on 2 occasions. Ugh!!!

My last episode was this Oct & the nurse practitioner at my firm's medical dept gave me the antivert.

I went to my primary doctor the very next day. He did a very thorough check. He said it could be food poisoning or virus or anything. I was fine the next day.

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Omg so all these symptoms just sounds like me, weakness, fatigue, dizziness, muscle ache also did have joint pain but went away, hepatologist says I’m confusing pbc with a virus he says I don’t have pbc but might be a virus ugh he also said a virus can trigger ama or mitochondrial m2 antibody in the system but all my symptoms are pbc related as what I read online and information about pbc but I don’t know what to do these doctors don’t listen to me the patient I’m telling them this is not new been with these symptoms for a while and elevetaed liver enzymes but just gotta find a good doctor that would actually want to fix my problem ( why are my liver enzymes elevated, why I’m losing weight and why ama is positive) instead they say go home nothing wrong with you you don’t have pbc ok what if I don’t have pbc so why am I sick then? What do I have? Feeling little frustrated here I was thinking to go somewhere else to see a doctor that would actually wants to help me.

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I don’t want to imagine then taking urso, will make feel more dizzy? :( I’m already dizzy actually wasn’t feeling well last 2 days felt weak and dizzy today I’m better but looks like comes and goes. I can be fine 1 week and next week can feel sick.

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My episodes are not pbc or urso related.

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I have suffered with benign vertigo for years, and since diagnosis for pbc I have had dizzy spells on and off, I thought it was a side effect from the drugs.

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Yes, I had it about a month ago. It hit me so suddenly, I almost fell, but caught myself. I figured it was inner ear because my head was kind of stopped up that day. I put ten drops of Peroxide in my ear and that took care of it.

A few years ago I had four such episodes in just a few days and it turned out to be an allergy to the fillers in a new generic BP pill I was taking. The doctor at the FDA said he couldn't tell me what I'm allergic to because they have no way of knowing what they use for fillers. That was really scary because it hit me twice while driving and I had to pull over until it passed. So glad I figured out that one too.

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Hi,

If you are taking URSO, one of the side effects says "dizziness."

I have dizziness too. Not super bad but I have it just the same. It's why I looked over what the side effects were to Ursodiol. There are a few others too but dizziness was definitely one of them.

It's interesting that not everyone experiences having dizziness though. And, some have it more extreme than others. Maybe as your body gets used to the drug it will get better. It did for me. I still have it though. Just not as bad as before.

Stella ❤

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I take Urso ( not a generic one) !! I read all the side effects and it does not mention dizziness at all! Normally this type of dizziness is to do with a virus or dislodged crystals in the ear . I don’t think we should blame everything on PBC or Urso .

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It is not listed on mine . Stella . I have had labrynthitis in the past befor e PBC and Urso so it may not be connected to the drugs . Everyone is different I guess . I was amazed at how few side effects there are with Urso thank goodness although I appreciate it is not suitable for everyone and does not work for everyone

Best wishes Miriam

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Hi Mirimaur,

I'm so glad for you ❤ What do you take? I'm now on URSO Forte. It's listed 3rd on my sheet. I was on generic U F before and it was a symptom listed on that sheet too.

Dizziness can be from many many other things for sure and they should probably be checked out by your doctor.

Thanks though, for letting me know some Ursodiol doesn't cause this symptom.

Stella ❤

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Hi,

I Googled side effects of Ursodiol. Here's what I found...(I just copied and pasted what I found below.)

Side effects of Ursodiol...

"Other less serious side effects are more likely to occur, such as:

1) Fever, chills, body aches, flu symptoms;

2) Stomach pain, nausea, diarrhea, constipation;

3) Dizziness, tired feeling; back pain;

4) Runny or stuffy nose, cold symptoms; or headache."

There it is... #3

Stella ❤

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Thanks Stella.

Maybe that’s what’s causing it. As I didn’t have any problems before urso. It’s so hard to tell whether any symptoms are from pbc, urso or something else entirely! It’s quite frustrating.

Best wishes

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I know. It is frustrating. If it continues to get "worse," I'd talk to your doctor about it. Maybe it is something else. But, most likely it's the meds. Hopefully it'll get better and subside.

Stella ❤

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I am post transplant, (PBC) prior to tx i had everything described in extremis (The itching was not as bad for me as some describe) Now, post tx and with some bile issues (and PBC the tx does not "cure" PBC, I am on Urso (which really helped my numbers that were elevated 12 months after tx)

I get "tinnitus" type noise (sometimes) and dizzy ...here is MY question, does anyone get what I call a "reset" ?

I will try to describe (difficult) the gentle buzzing suddenly stops for 1/2 second, all goes very quiet, then the buzzing starts at a different frequency for 1/4 second, and sort of come on / off a couple of times in rapid succession, reverting back to iots normal buzz.

It is not uncomfortable, nor am I worried (been happening for years since just before TX and after) just wondering if anyone else recognises this description?

I had (pre tx) what everyone thought was a stroke, (myself included) hospitalised.

The top man at Freeman said this is not unknown in PBC, there is a gland that detects blood pressure in our necks, when pressure falls suddenly, it causes heart to increase pressure (work harder and faster) and constricts our blood vessels (to cause the available pressure to be maintained) he said it was a bit like a fast jet flying suit. Point being PBC is known to interfere with this glands performance. i less extreme circumstances this could cause dizziness.

I find all this really interesting! of course NOT ALL (by any means) dizziness is due to this effect! always consult your medical team! To listen to anecdotal stories like this may help educate you and your doctors if you tell them, but they know more than us!

Good luck all.

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I had something called labrynthitis which is an inbalance of the liquid in the inner ear. I think it's caused by a virus. It felt like the room was spinning, mostly when I turned over when lying down. I was given some medication but this was before I had PBC. I think that some sort of manipulation of the head can be done by a doctor, usually as a day patient at a hospital. Hope this helps.

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I had exactly the same , before PBC same symptoms , treated with serc and head manipulations I really don’t think it has anything to do with PBC I was told it was labrynthitis

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Might possibly be vertigo. My mom would have it. The room would spin & sick stomach.

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Dizziness can come for many reasons, I live with it almost daily consultant said it's not related to PBC or the URSO.

They think mine is due to ear problems that I had surgery for, so I take tablets when it's really bad.

ktltel do you have a link for those side effects it would be interesting to take it to my doctors.

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Wish I knew hope someone may come up with the answer I get it too not all the time but don't know what the trigger is. Fed up every day waking up with something else wrong had scans, x-Ray's and bloods done but all come back normal feel like a Freud.

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Whether or not it can be caused by Urso, I do think there need to be more checks on this - especially if it is your inner ear (centres of balance) that is causing the problem.

Over 10 years ago, I had one bad bout of vertigo - where I kept falling /nearly falling over - and then some bouts of less serious dizziness, several years ago. Both times my GP reacted promptly, suggested some exercises and did her own tests. When, in both cases, it did not improve she sent me to a specialist. In both cases the specialist sent for a brain scan to rule out any nasties - particularly Meniere's Disease. It was all clear and I've since learned that any time I notice even the mildest sign of being 'off-kilter', I have a phase of carrying out the Eppley manoeuvre, (Google it, it's easy to do, but do follow the instructions about the exact angle of head and body positioning, as well as time to hold each position. NB menopause can cause some dizziness.

Hope this helps, but I do think you should have more checks.

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Thanks. I hadn’t thought of the menopause. Could possibly be that. The flushes have been worse lately too so it’s a possibility.

The doctors gave me some tablets for vertigo so will see how that goes. Although she said to wait and see if gets worse before doing any more testing.

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Thanks for all the replies. Sounds like it’s probably vertigo. Going by a lot of the responses so will see if the medication helps.

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I’ve been taking Urso for just over a year but the dizziness started before I was diagnosed — the kind of dizziness that can make you fall over. Even tilting my head back to check inside the microwave causes me to get dizzy. My ENT explained that it’s due to “floating” calcium deposits that get dislodged in the middle ear. Look up “epley maneuver “ and there’s a description of the treatment that helps the crystals float back into place. There is no long term fix but it’s easy to do (you can do it at home) and does give some relief.

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