Has anyone got any suggestions for dizziness testing I should request? Anything I should be asking to have ruled out? This appointment will be my first opportunity to give a history and have possible causes considered, and maybe my last for some time. [Summary in post]
I was hoping to get some advice on what testing I should ask for at an upcoming audiology appointment. This is the first time I'll be giving a proper history.
I'd like to get to a better understanding of the cause of my symptoms, rather than just management of symptoms, which so far has not been that helpful. A prior appointment found corrective saccades on right side, but I'm not sure how useful that is for guiding understanding/treatment.
This is a summary of information I've put together for my appointment in case that is useful:
Dizziness timeline:
2022
Acute episode of dizziness when moving from lying down to standing. Unable to remain standing. Some dizziness remained and faded to nothing after a few weeks.
Tried Brandt-Daroff exercise during this time- very triggering of symptoms on one occasion
Saw GP practice nurse during this time who didn’t observe nystagmus, thought it was may have been BPPV that was resolving
Symptoms improved gradually, gone after a few weeks.
Sometimes particular upside down head position could cause temporary mild dizziness
2024
Approx November Period of washing hair upside down over bath seemed to cause temporary dizziness afterwards. Had other mild, short episodes of dizziness eg when inserting and removing silicone ear plugs
December - Six weeks after having a cold that did not seem associated with dizziness, acute episode of dizziness when moving from lying down to standing. Unable to remain standing, intense nausea, more severe and long lasting than the previous episode.
Some dizziness remained, particularly triggered by looking down.
Symptoms often worse in evenings, best on getting up in morning.
Symptoms often felt best when walking.
Fluctuated in intensity for nearly a year until approx September 2025, when symptoms worsened.
Very mild, occasional tinnitus worsened and became more frequent during this time.
Symptoms worsened again in December. More and more triggered by movement, less by looking down. Started to get nausea. Metoclopramide and ondansetron helpful for this.
Interventions tried:
Tried the Epley manoevre from December 2024
From January 2025 did some vestibular training exercises from YouTube
From June 2025 replaced these with Cawthorn-Cooksey exercises for about two and half months.
From about October 2025 did approx 6-7 weeks of vestibular physio gaze stabilisation exercises. Symptoms shifted away from being triggered by looking down
Restarted gaze stabilisation physio exercises in April 2026.
Symptoms
Present most of the time to varying degrees and in varying ways
Symptoms shift in intensity, location and quality.
No nystagmus?
Sensation of movement/sea sickness
Sometimes seeming to come from the left ear or neck/base of skull, but often not.
Nausea (particularly with movement, bending and turning over in bed)
Tinnitus, normally mild ringing/whistling, particularly in left ear. Sometimes just in left ear, sometimes both ears, occasionally just right. Sometimes ‘swooshing’ pulatile? tinnitus , normally in left ear, particularly if head is back. Possible long-term low-frequency tinnitus?
Pressure in and by ears
Eyes sometimes seem out of focus, particularly when scrolling on phone
Symptoms can be triggered/worsened by:
Movement, particularly turning at the moment.
Pressure on head (eg washing hair, lying on back)
Turning over in bed (particularly nausea and tinnitus. Normally hiccup when I turn over in bed).
Recently associated with headache at back of head and sensitivity to pressure on head, particularly at back of head/top of neck.
When very sensitive, talking
Occasional pain in ear from sound, particularly in left ear
Last year - some visual things eg looking at supermarket shelves
I've had two previous brief appointments, prior to this upcoming longer appointment:
September 2025 appointment:
Dix-Hallpike test negative
Unterberger test and ear & cerebellar examination normal
December 2025 appointment:
found corrective saccades on right side.
No nystagmus observed at any time
I've wondered about eustacian tube dysfunction, or other issue, in left ear?
Pre-existing conditions/symptoms:
Migraine (pain centred in left temple and left eye. Diagnosed approx twenty years ago)
Hypothyroidism (diagnosed approx 15 years ago)
Ehlers-Danlos Syndrome (EDS) (diagnosed apprx 10 years ago) [I've seen that craniocervical instability (CCI) can be associated with EDS]
Postural Tachycardia Syndrome (PoTS) (diagnosed approx ten years ago)
Long term - itchy, flaky skin in ears, use betnesol steroid drops several time a week, 0.1% ear drops
Since approx 2023 - blocked, popping left ear, particularly when congested, sometimes pain, particularly if pressure is put on ear with long term use of silicone ear plugs where a seal is created
Menorrhagia - Mirena coil fitted for heavy menstrual bleeding resulting in lighter but prolonged (normally at least 14 days) menstrual bleeding
Possible perimenopause - shorter (low of 14 days) & more irregular menstrual cycle, hair growth - trialling oestrogen spray
Sometimes - headache at base of skull, sometimes on left and going to left side of head. Possibly associated with dizziness, possibly not.
Numbness and tingling, in finger tips, particularly thumb second and third fingers, triggered by some activities such as using phone. Pain at right scapula.
Family history of glue ear.
Narrow ear canals.
Thank you to anyone reaching the end. Any advice would be gratefully received. Best wishes to everyone suffering from these symptoms.