Sjogren's and severe vertigo

Yes I now fall alot for no reason.

I've had three attacks of BPPV (benign paroxysmal positional vertigo) in the past 25 years - two of them since getting my first Sjogren's symptoms. This is indeed the one where the crystals floating in the fluid in the inner ear get in the wrong place and start sending wrong information to the brain about the position of your head in space. Most sites insist there's no connection, but the VEDA (Vestibular Disorders) site does list Sjogren's as a possible cause.

However, your vertigo may not be down to BPPV, as there are several other causes, including Ménière's syndrome and a viral infection in the inner ear. The chills and sweating don't fit the picture for a start, and sound more like some kind of infection.

In BPPV you only get the spinning sensation and the falling over when you move your head into certain positions - mainly bending it backwards and to one side, or bending forward in any direction. Getting into bed, turning over in bed and getting up will also trigger an attack. These episodes cause extreme nausea, but the symptoms last max 30 secs - just the time for the crystals to stop moving again after the head tilting has set them off. As long as you remember not to move your head suddenly (i.e. move very slowly and stiffly like a zombie) you don't get the violent attacks of spinning and nausea. You do, however, have a constant feeling of instability, mild nausea and being unable to walk straight - a bit like being on a boat all the time.

It's only on the very first day of a spell of BPPV (or after inept head manipulations from a doctor who doesn't know what he's doing - as per my experience during my first-ever attack) that you get really bad nausea, vomiting and total inability to stay upright. This is the period where the errant crystals haven't yet decided where they're going to settle and are wandering around all over your inner ear. Once you've been lying down for a while, they settle into their hiding place and only cause serious trouble when you make a wrong move.

Unfortunately a lot of doctors - and even, shockingly, some ENT specialists - don't know a lot about BPPV. If you can manage it, the go-to is a physiotherapist who specialises in vestibular disorders. There's a very simple test they can do to establish whether it is BPPV or not. If it is, they can cure you with a five-minute head manoeuvre, which is uncomfortable but not unbearable. If it's not BPPV they can point you to the right specialist - neurologist, ENT or neurotologist, who combines both disciplines. Some cities also have balance or vertigo clinics, where they can diagnose or treat you. If you can't self-refer to any of these you'll just have to see your GP and/or an ENT and trust to luck you can find one who knows what they're talking about.

If you got lucky and it is "only" BPPV, it will eventually clear up by itself. Most sites say two months but it can be a lot longer than that. It was nearer 18 months in my first attack, which went untreated. If it turns out you have Ménière's or nerve damage due to a viral infection, I'm afraid you could be in for the long haul.

There's a vertigo forum on this site btw, which would be worth a visit.

yes yes yes..I HAD VERTIGO CONSTANT 24/7 FOR 14 YEARS..IT JUST CAME THEN WENT BUT THOSE 14 YEARS WERE HORRIFIC..I COULDN'T LOOK DOWN OR UP..NEEDED HELP TO WALK , NO MEDICATION OF ANY SORT WAS ANY GOOD. ,APPARANTLY MOST OF THE FLUID IN MY LEFT EAR CRYSTALISED....IT WAS A SHOCKING 14 YEARS..IF I DIDNT WEAR REALLY REALLY FLAT SHOES I COULDN'T GO OUT..IF I EVER STOOD ON A MATCHSTICK IT WAS LIKE I WAS ON THE EDGE IF A CLIFF FALLING. ??AND IF COURSE ALL THE VOMITING AND SWETTING THAT GO WITH IT??? IT REALLY FRIGHTENED ME AT FIRST I THOUGHT IT WAS BRAIN CANCER!! WHEN I FOUND OUT I WAS NOT SOO RELIEVED ME THEN I REALISED IT COULD HAVE BEEN SOMETHING REALLY SINISTER??I BECAME QUITE GRATEFUL??? BELIEVING IN GOD REALLY REALLY HELPED??.BE BLESSED ddfin..HOOE YOU GETWELL SOONxx

Yes I had it for years. I have Behcet's rather than Sjogren's but very similar. These illnesses can affect the centtal nervous system and that is what happened to me. I know there are different treatments available fo the two disorders but interferon helped massively in my case and put me into a sort of remission. Very mild symptoms now. I am only using plaquenil these days for some joint pain. But it helps settle the mild dizziness I still had. I fell several times before it was prescribed. Now taking it for over a year and no more falls. It is also a common drug used for Sjogren's.