Lightheadedness and vertigo in Sjogren's Disease

Lightheadedness and vertigo

The ear is connected to the vestibular system which affects balance.

Vertigo is seen frequently in autoimmune diseases including Sjogren's Disease (SjD).

Both sensory organs of the inner ear can be involved in autoimmune disorders: cochlea for the hearing and vestibular system for the balance.

As many people mentioned in our Sjogren's group mentioned they had these inner ear problems of dizziness and balance problems I will be sharing more information about them but a specialist is needed to diagnose these issues. The following specialist's may be able to help:

Audiologist
An ear nose and throat specialist (otolaryngologist)
Neurologist

Possible medical conditions affecting balance and causing dizziness.

Recurrent positional vertigo is most often caused by benign paroxysmal positional vertigo (BPPV). BPPV has the sudden sensation that you're spinning or that the inside of your head is spinning. BPPV causes brief episodes of mild to intense dizziness. It is usually triggered by specific changes in the position of your head. This might occur when you tip your head up or down, when you lie down, or when you turn over or sit up in bed. (MAYO CLINIC)

Recurrent spontaneous vertigo has two common causes: either Ménière's disease or vestibular migraine.

Meniere's disease is an inner ear disorder probably caused by a fluid buildup and a feeling of fullness and pressure in the ear. The symptoms include episodes of vertigo, hearing loss, and tinnitus (ringing in the ears).

A vestibular migraine is a nervous system problem that causes repeated dizziness (or vertigo) in people who have a history of migraine symptoms.

Balance issues in Sjogren's syndrome can have many causes including Chronic vestibular insufficiency or peripheral vestibular impairment.

As you can see this is a complex topic and having a correct diagnosis, from a medical professional, allows treatment for many of the disorders.

🌀 FAQs: Lightheadedness, Dizziness & Balance in Sjögren’s Disease

Q: Is dizziness a common symptom of Sjögren’s, or should I be worried about something else?

Yes, dizziness and lightheadedness are frequently reported in people with Sjögren’s. These symptoms can stem from autoimmune-related inflammation in the inner ear, medication side effects, dehydration, or coexisting conditions like POTS (Postural Orthostatic Tachycardia Syndrome). Still, it's important to rule out other causes with a specialist.

Q: I feel like I’m swaying or tilting even when I’m standing still. Is this vertigo?

That sensation may be a form of chronic vestibular insufficiency, which can occur in SjD. Vertigo typically involves a spinning feeling, but imbalance or disequilibrium without spinning can still be vestibular-related. A vestibular assessment can help clarify the cause.

Q: Can Sjögren’s affect my ears directly?

Absolutely. Both the cochlea (hearing) and vestibular system (balance) can be affected by autoimmune inflammation. This may lead to tinnitus, hearing changes, or balance disturbances. Some people also experience ear fullness or pressure, especially if fluid regulation is disrupted.

Q: What’s the difference between BPPV and vestibular migraine—and how do I know which one I have?

BPPV causes brief episodes of dizziness triggered by head movements (e.g., rolling over in bed).
Vestibular migraine involves spontaneous vertigo episodes often linked to migraine history, even without a headache. A neurologist or vestibular specialist can help distinguish between them through clinical tests and symptom history.

Q: I often feel lightheaded when I stand up. Could this be related to Sjögren’s?

Yes, it could be related to autonomic dysfunction, which is increasingly recognized in SjD. There are many other conditions that can cause this - conditions like POTS or orthostatic hypotension can cause blood pressure or heart rate changes when standing, leading to lightheadedness. A tilt table test or autonomic screening may be helpful.

Do you get lightheadedness and also have Sjogren's? I do and I would love to hear from you in the comments.

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