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Sjogren's Syndrome
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Posted 7/3/2013 2:30 PM (GMT 0)

I just wanted to extend a welcome to our new Sjogren's forum member, Margarita. Please give her a shout out and comments!

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 7/3/2013 11:38 PM (GMT 0)
Hi I am new to this group, but I have both Sjogren's Syndrome and often have had vertigo. If you find any answers, please do pass them on. I have had diagnosis of the Benign Positional Vertigo, but for me it can feel pretty serious and can last for hours, days, or weeks. It does not feel benign to me! I have not had the Elpeys procedure, and some people have suggested that it is not something you want to do unless there is no other option. In our Sjogren's support group in my area surprisingly many of our members have had vertigo problems when we talked about it one day.
Posted 7/4/2013 1:47 AM (GMT 0)
I was having vertigo a fair amount 2 or 3 years ago. I found a series of positional moves online that you can do yourself to move the crystals around so they can start dissolving. It did seem to help a bit - longest stage of dizziness was about 3 weeks, did the moves 3 or 4 times the last week.

Best wishes - I couldn't type or read when I had it.
Posted 7/4/2013 1:56 PM (GMT 0)
Welcome to our forum NanaJ. I was diagnosed with Lupus a couple of years before my Sjogren's diagnosis. I had balance problems while searching for a diagnosis (Lupus) and continue to have balance problems. I fell in my living room Tuesday and that's not unusual. Oddly though, I don't have vertigo. My most common cause of falling is if I turn suddenly. One day I had my two exotic silky guinea pigs in their pen on the floor, turned suddenly and fell with my right hand landing directly on Elvis. He died two days later. My falls don't commonly end in first degree pig slaughter. I just usually end up with lots of bruises.

I had vertigo for several weeks, many years ago and it was a bear. It sounds like Lynnwood found something that helped. I hope NanaJ and Margarita find help soon! Love, Butterflake

Posted 1/22/2014 5:52 PM (GMT 0)
I have Sjogrens and also for a year or two had frequent, long lasting, and severe positional vertigo. One PT made a connection between dehydration and vertigo so I started sleeping breathing the mist of a personal humidifier and have not had a single recurrence of vertigo since. Everything is better, dry throat, dry eyes, dry skill, dry sinuses. I highly recommend this approach.
Posted 9/28/2014 12:44 AM (GMT 0)
Kithansen, thanks for sharing the idea about using a personal humidifier. I have used eyedrops (of course) and saline nasal spray, which helps a lot, but it makes sense that breathing air with some moisture in it, especially during sleep, would be helpful.
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