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dizziness with sjogren's?

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Sjogren's Syndrome
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Posted 9/11/2009 1:22 PM (GMT 0)
I think we have some scleroderma folks hanging out over in the Lupus forum. You might want to post over there and see if you get any info that way.
Posted 10/6/2009 11:39 PM (GMT 0)
I have sjogrens syndrome and i notice a lot of itching ears and a lot of ear infection . I have not heard of the sjogrens and dizziness being associated but anything is possible. I think the ear problems are from the mucus membranes drying out and not leeting your ears flow properly.
Posted 8/26/2012 11:22 PM (GMT 0)
Yes.  I have Sjogrens, but prior to being diagnosed with Sjogrens, I had terrible vertigo, and was diagnosed by a neurotoligist as having Endolymphatic Hydrops.  I literally had to hang onto walls to maneuvre around.  It was not fun.  Once I was treated for the Sjogrens, the vertigo got better.  I rarely have days anymore where everything is spinning.  The vertigo makes you tired, and affects your concentration.  Interestingly, I take Pristiq for mild depression, and if I miss a dose of Pristiq, my vertigo comes back with a vengence.  My doctor is baffled by that one.  I hope you get better soon.  Vertigo pretty much can consume your life, so you have to have a positive outlook and not let it get to you.
Posted 6/7/2013 4:09 AM (GMT 0)
wow, dizzy, itchy ears, ringing, have had all of these and never thought it might be related. So much to learn, still waiting on a diagnosis but I tell you this has been a ride. Dry mouth and eyes, swollen tongue, inflamed taste buds, tired and mood swings like i have never seen before. Feel like I could fall off the earth one minute and calm the next. And the hot flashes, do the symptoms ever stop. I could use all the support anyone has to offer at this point.
Posted 6/13/2013 3:41 AM (GMT 0)
This is an interesting topic.  I don't have the best of ears in the first place.  Already have hearing loss due to lots of scar tissue from tubes in ears as a child and lots of infections.  I have been noticing in the last year and half that I have been having more bouts of dizziness and lightheadedness.  I have also had itching and eczema/psoriasis in my left ear and on my ear lobes.  To the point I itch so much I cause a skin infection in my ear (swells up and inflamed).  My ear lobes get a crusty substance that cracks and flakes.  It is annoying!  Could this be related to Sjorgren's Syndrome or any other auto immune disorder? 

My PCP has prescribed Cortisteriod ointment for the inside and outside of my ears that works from time to time.  I get ringing in my ears and sometimes this weird thud, thud sound like a helicopter. 

Posted 7/2/2013 4:52 PM (GMT 0)
I've had Sjogrens for years with many of its manifestations. For the past year I've had problems with poor balance and that awful insecure sensation, all attributed to recent hip replacement until right out of the blue I had an episode in which it felt I'd been shoved violently and fell, experiencing vertigo. To cut the story short, in hospital a brain scan ruled out a stroke and a diagnosis of benign paroxysmal positional vertigo (BPPV) was made. It's caused by crystals in the inner ear canal breaking free and floating about, totally confusing the brain. It's curable by Epleys manoeuvre (a series of positional moves done by an expert). After 4 attempts without success I'm now being checked for "central vestibular" problems. Waiting for the appt I browsed google - masses of info much of it over my head, but guess what turned up as a possible cause?? Our old friend Sjogrens! Seems there is no place in our bodies that can't be affected. If I get any answers I'll pass them on.

Good luck

Elaine
Posted 8/13/2013 5:14 PM (GMT 0)
what amazing luck to have disdovered this forum. Thank you all so much. I thought I had reached the end when I couldn't even get out of bed because of the balance problem. The symptoms, ideas on causes, and various kinds of treatments you have mentioned have been very helpful, and above all you have given me the confidence to go back to my GP and ask that she checks for a connection between my sjogrens, my latest episode - almost the worst in my experience - of poor balance - itchy ears, and inflamed throat glands. I send my hopes and best wishes that you will all obtain some - if not total - alleviation of these wretched symptoms.
Posted 8/16/2013 1:35 AM (GMT 0)
I have had only one case of dizziness, and thought my sugar may have dropped.  May or may not have, I ate a candybar and sat down and I felt better.

I am having major isseus  with dryness.  My mouth, my nose, and ears, I have been using nasal saline as well as spray to help the nose dryness.   It is not working as well as it did.   I uses the saliva pills as well as biotene for my mouth.   I have an extremely sore throat right now and am running fever.  I obviously have an infection and am on antibiotics, but wonder if the sjorgrens is aggravating things.   The restasis seems to be working well on the eyes. My left ear stays dry and stopped up, don't know if its caused by the sjorgrens.   The ENT cannot seem to get it unstopped and it stay that way.

My hips have been awful and have found I have osteoporis as well as osteoarthritis in both hips.  Not related to sjorgrens, but definitely painful and not allowing me to sleep much at night,

All in all I can I am okay,  I am like the energizer bunny, I keep on ticking...........................                  .....................

Posted 8/17/2013 4:59 PM (GMT 0)
Hi Bluejeans. First, let me say that you're not alone with the hip problems. I have arthritis in both hips (right hip worse) and I also have osteopenia which is low bone density. Mine is from lupus and prednisone. Yeah, trying to adjust multiple pillows at night to help the pain can be what seems to be never ending.

As for your ears, I've found that many docs don't understand autoimmune diseases, so they can't comprehend why we don't  respond to conventional treatment. Sinus or ear infections can both block the ear canal and so can autoimmune inflammation all of which leads to hearing loss. A common solution to this is to have tubes put in your ears like little kids get. The tubes allow the eustachian tube to drain.

I hate the dryness in my nose too. I've been told to cover the inside of my nose each night with polysporin ointment. Try to use nasal decongestant sprays as little as possible because they dry the nose. 

For my mouth I use Biotene Oral Balance gel at night, mouthwash without alcohol (I use ACT cause it builds enamel), and during the day I often suck on xylitol (a sugar free sweetener that makes one salivate) lollipops or Trident gum.  Keep on ticking bunny! Love, Butterflake

Posted 8/19/2013 12:56 AM (GMT 0)
yEAH
Posted 8/19/2013 12:59 AM (GMT 0)
My hips may be due to lupus and predisone too. I am down to 2 mg a day now. For the longest time that's how they controlled the lupus was with the predsone. The rituxan really helped everything including the sjorgrens. Hopefully by Oct. I can get another infusion

Now I am dealing with a sore throat, fever and stopped up. ears
Posted 8/19/2013 3:58 PM (GMT 0)
That fever with ear and throat issues sounds like bad news bluejeans. I hope you can see your pc. Love, Butterflake 
Posted 7/13/2017 4:41 PM (GMT 0)
This is many years after the thread began but I must post that I have dealt with dizziness and light headedness for several months and the doctors could not diagnose what causes it. I first went to my rheumatologist who sent me to my pcp who sent me for several tests and to see a neurologist. Now I after reading the thread, I believe it is my Sjogrens. Thanks for the information.
Posted 9/6/2018 12:58 AM (GMT 0)
I am a male in my 50s and wanted to contribute to this discussion in case others also had this issue. I have had dizziness and sometimes nausea and was wondering if it were related to my Sjogrens. I understand that women are the ones usually diagnosed with Sjogrens. I also have type 1 Diabetes, electrolyte issues, and severe dry mouth.
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