Sjogren's and vertigo

Hi sirenetta,

I've had three episodes of BPPV (benign paroxysmal positional vertigo), two in the right ear and one in the left. This is the one where the crystals in your inner ear get loose in the semicircular canals and start sending wrong messages to your brain about the position of your head in space.

The first attack was more than 25 years ago, two or three years before my first SS symptoms, and the next two both occurred last year (but in different ears).

I researched this, but I have to say I don't believe it's SS related. I did, however, see a passing reference somewhere to Sjogren's being a possible trigger. I believe it was on the Vestibular Disorders Association site (which you can google) but couldn't swear to that.

The most recent attack was very mild, and was brought about by the dentist using the slow-speed drill to roughen the surface of my teeth before applying protective veneers against gum shrinkage. It wore off after a couple of weeks.

It was only then that I realised that the first attack, all those years ago, was brought on by prolonged use of the same slow-speed drill. At that time the dentist was trying, unsuccessfully, to get through calcifications in a tooth to do a root canal. Now calcification of the tooth pulp can indeed be related to Sjogren's or RA btw, and I'd had a short, sharp attack of what did appear to be RA about 30 years ago, five years before the first drill episode.

Many people are sensitive to the low-frequency vibrations of the older, low-speed dental drill. Some even report the crystals getting displaced by using an electric toothbrush. However, the second attack, which was very severe and started just over a year ago, appeared to occur spontaneously, which is most often the case. It can also be triggered by a blow to the head. Fortunately, this last time round my GP was able to recommend an excellent vestibular physiotherapist, who fixed the problem in minutes by performing the Epley manoeuvre.

To reiterate - I wouldn't close the door on it being SS-related, but on balance I don't think it is. (Oops - sorry for the 'balance' pun!)

YES! a major one.  I never connected the two. I was not diagnosed with SS until last September.  4 or 5 years ago - out of the blue - I was struck with severe Vertigo!  I saw every kind of specialist and they ran so many tests.  Nothing was ever diagnosed.  About the same time, I began having major migraines.  I had never had them in the past.  Today, I only get 1 or 2 migraines per year and the vertigo is gone.  It lasted about 1 1/2 years, slowly getting better over time.  At first, I couldn't even drive. Now, you have me wondering if there is a connection too.

Yes yes yes..the wax in my keft ear just about all of it crystallised, I had vertigo 24/7 for 14 years..it was horrid, I really feel for you and any others who suffer from this..mine lasted 14 years, it just went away 2 months ago- it’s awesome now,  praise God, hope your vertigo goes quicker than mine did, there was nothing medically or natural that I could take for it either, I was offered sooo much from well intended family and friends, but nothing will work, it just has to have time to right itself again, bless you sirenetta and have a lovely day😍😍😍🙏

I had severe vertigo (could barely walk, went to ER/vomited) around September.  They never found a cause, but said it might be an inner ear infection.  The following May I woke up one morning with dry mouth. A week or so later my eyes started getting super dry.  I also noticed that my voice was a little hoarse at times during the times between the vertigo and the dry mouth, along with a very hint of a feeling, like almost a light burning in the back of my throat for months... like it was lurking there waiting to strike. It's been quite a stressful year so I'm thinking it was brought on by stress.

I believe there is a well acknowledged connection between Sjögren’s and eustacian tube dysfunction (Labyrinthitis, Cogan’s Syndrome and Menieres Disease). If you google autoimmune ear diseases you should see Sjögren’s listed as a related condition. 

For those, like me, who have related small fibre and possible brain involvement, the damage to small nerve fibres or even several forms of Vasculitis can cause significant damage to the ear. As well as peripheral vestibular disorders our balance can also be affected by central  vestibular disorders sometimes associated with Sjögren’s. I know all this because I was recently referred to an ENT surgeon specialising in balance disorders and he explained this to me and the two medical students present. I have to have a VNG test in a few weeks to try and find the cause of my disequilibrium and vertigo. Until recently I’ve always been told it was the impact on my proprioception of small fibre neuropathy (SFN)in my feet. But this ENT doctor agreed with me that this is unlikely as I’ve had SFN for about 8 years - but have suffered various problems with my balance for much longer.  

I also have tinnitus which may or may not be directly related to Sjögren’s. I don’t think they know enough yet about this relationship between Sjögren’s and our ears and balance.