to put it lightly my whole life is on pause or taken at a completely different pace now. I hardly ever go anywhere without my hubby coming and when I do make it out I can spend days recouping in bed sometimes with flare ups. It’s horrible.
Full History
This all started around 10 months ago. Before that I’d never experienced vertigo or dizziness like this.
Since those first attacks I’ve been battling near-daily wooziness to varying degrees. It’s not always true dizziness or spinning—more of an “off”, light, disconnected feeling that fluctuates throughout the day. Some days are much better than others.
Unfortunately my anxiety has completely latched onto these symptoms. As a result I now often experience a strong fight or flight response, particularly if I feel strange while I’m out. The vertigo and dizziness came first, and the anxiety followed because of them. I’ve recently been started on propranolol (beta blockers) to help manage the physical symptoms of anxiety while I work through everything.
Towards the end of last year and again in February I was diagnosed with labyrinthitis/vestibular neuritis (I’m honestly not 100% sure which term was used), but I’ve never really felt that diagnosis completely fitted because my symptoms have been spread over many months rather than one prolonged illness. I was also given BPPV (Benign Paroxysmal Positional Vertigo) exercises to do at home. I was told they would probably provoke my dizziness while doing them, but they never did, and they didn’t seem to improve anything either.
Episode 1 – October
I was standing beside my pram at the hospital. I bent down and reached underneath the pram to my right, then straightened up and suddenly the whole room spun. There was no warning whatsoever.
Episode 2 – October
Later around the same time I bent into the pram on my left, lifted my toddler out and turned him towards the car while keeping an eye on my older child. Again I suddenly developed vertigo with no warning.
Episode 3 – November
I was helping decorate for a birthday party and reaching above my head to hang a banner. This wasn’t true spinning, but I suddenly developed a very strange feeling in my head that made me feel like I needed to leave immediately. I developed a mild headache afterwards.
Episode 4 – February/March
I’d been rushing around all morning hanging washing above my head. I then quickly went to the toilet and while sitting there developed another episode of vertigo.
Episode 5 – Recently
I was sitting on my bed playing with my children. This time I noticed a strange sensation at the base of my skull beforehand, followed by a stomach-drop feeling, then the room briefly spun (only for around a second). Since then I’ve been left with a constant “boat” feeling and moving my head makes it feel like my brain has to catch up with my movements.
Symptoms I’ve experienced over the last 10 months
Balance/Dizziness
- Near daily wooziness/lightheaded feeling.
- Recurrent vertigo attacks lasting only seconds.
- Feeling like I’m on a boat afterwards.
- Motion sensitivity.
- Head movement making me feel like my brain has to “catch up”.
- Feeling like my head and the world need to reconnect after moving.
- Feeling much better lying still.
- Head movement can make me feel “whoa”.
Before some attacks (but NOT all)
The first two attacks had
no warning at all, but more recently I’ve sometimes noticed:
- Tingling across my forehead.
- Tingling at the base of my skull.
- A stomach-drop sensation (like going quickly over a hill in a car).
- A feeling that something isn’t right.
Ear symptoms
- Fluctuating tinnitus almost daily.
- Some days it’s barely noticeable.
- Other days it’s loud enough that I struggle to ignore it.
- It can last seconds or several hours.
- Ear discomfort that comes and goes.
- Ear fullness/pressure.
- “Blocked but not blocked” feeling.
- Recently a very pressured feeling in my right ear extending into the area just in front of my ear and into my right cheek.
- Ears often feel like they need to pop but won’t.
- Hearing has remained normal between both ears as far as I can tell.
Head/Face
- Mild headaches.
- Pressure around my temples.
- Occasional odd sensation over my right cheekbone that isn’t numb—I can still feel touch—but feels cold or tingly when it isn’t actually cold.
- Tight neck muscles.
- Tight shoulders.
Recent illness
Before this latest episode I seemed to be coming down with a mild viral illness:
- Dry throat.
- Mild cough.
- Blocked nose.
- Mucus at the back of my nose/throat.
- More recently just slight blockage in my right nostril and ear pressure.
Possible triggers or situations where symptoms have happened
- Bending then standing back up.
- Looking up.
- Reaching above my head.
- Some head movements.
- Fatigue.
- Hormonal changes around my menstrual cycle.
- Illness seems to make everything worse.
Things I DON’T seem to have
- No hearing loss that I’ve noticed.
- No facial drooping.
- No arm or leg weakness.
- No speech problems.
- No loss of consciousness.
- The actual spinning itself is always very brief.
The hardest symptom to explain
The best way I can describe it is that moving my head sometimes feels like when you’ve shaken your head too hard or too fast and everything has to catch up for a split second. It isn’t always true spinning—it often feels like my balance system is lagging behind my movements. After the brief vertigo episodes I can feel like I’m on a boat for hours afterwards.
Has anyone experienced anything similar? If so:
- What was your eventual diagnosis?
- What investigations did you have?
- Did you see ENT, Neurology, Audiology or a vestibular physiotherapist?
- Did anything actually help?
I’m
not looking for a diagnosis, just hoping to hear from people who’ve genuinely had a similar experience and eventually found some answers.