Unexplained vertigo making me anxious

[Daisylion]

I have been experiencing vertigo and dizzy spells for 3 months. It comes and goes so I could have it for 48 hours and then it disappears for a few days and then comes back again. It has happened just when I've been lying still with my eyes closed, when I've been out for walks, when coming inside after being outside, just pottering about at home, working etc. Doesn't seem to be any pattern to it.

Not sure if it's relevant but:

For a few years I've had occasional slightly blurred vision in my right eye but the optician can't find anything wrong with my eyes and said it could be eye strain or dry eyes. I have slight horizontal misalignment of my eyes so wear glasses with a small prism to correct this but I only wear these for reading/computer work.

I have recently been getting occasional mild pulsatile tinnitus in my left ear and mild earache in both ears. Hearing isn't affected. GP said my ears look fine.

I've been having mild sinus pressure for about 6 months, complicated by sinusitis in the middle of that and hayfever which I have prescription nasal spray and eye drops for. No congestion, just slight feeling of pressure, which again comes and goes occasionally.

No headaches, no nausea, no hearing loss, otherwise generally fit and well, am 43 years old.

Does anyone have any idea what could be causing this?

I don't think it's labrynthitis or vestibular neuritis as I've had that before and it came on suddenly and was there all the time but gradually got better until after I was completely better after 8 weeks.

After telling me not to worry about it for the past 3 months I eventually got my GP to take me seriously and I got an appointment with him last week. He thought it could be Menieres disease and gave me some tablets (betahistine?) to take to see if it would improve, which it hasn't.

I have health anxiety so tend to assume worst case scenario and I have a brain tumour or something. The GP said none of this suggests brain tumour to him but I do struggle to trust doctors as my DD is disabled due to medical negligence at birth.

What else could cause vertigo/dizziness? Could it actually be anxiety causing it? I feel like the dizziness is causing the anxiety rather than the other way around! Or could my eye issue cause it (but have had the eye issue for years and dizziness is recent)? I am going to push for an ENT referral but GP said the waiting list is really long.

Sorry for long post but didn't want to drip feed. Would appreciate any advice or insight.

Just to add, the GP thinks the sinus issues are unrelated and said its really common for people to have sinus problems and this could be caused by all sorts of things like allergies etc. It doesn't really bother me other than make me worry it is a sign of a tumour! But then if it was caused by a tumour then surely it would be there all the time and not come and go?

It sounds like Menieres to be honest. Betahistine hasn’t been proved to be effective. Dh finds them helpful but still has attacks, especially if he’s had a lot of salt in his food or has resorted to taking anti histamines for hay fever. It can take several weeks for the betahistine to take effect.

Has anyone actually tested you for Menieres eg done balance type excercise s with you? Dh thought he was having mini strokes and was off work for 6 months before getting his diagnoses (privately in the end). In hindsight it had been coming on a year beforehand.

Menieres or vestibular migraines can be the most common causes. It may be worth asking your gp for a ent/ neuro referral and also for a referral for vestibular physio which can help to retrain the inner ear to start working again

I think dh’s private consultation cost around £200 in Birmingham. But as his sick pay was about to run out with no end in sight we swallowed the cost.

The GP did some tests for BPPV (lying down and turning my head) which was negative. He then did a thing where I had to follow his pen with my eyes, and then another one where I had to alternately tap his moving finger and then my nose. He said I was really good at it! So not sure what that shows.

Can it still be Menieres with hearing not affected? I actually have really sensitive hearing (annoys my kids as I can hear what they're saying even if they're whispering in another room!).

GP said to try the betahistine and if it doesn't work then it probably isn't Menieres. That sounds wrong if it doesn't always work?

I can pay for a private referral if necessary, but would need the GP to agree to refer me first.

Can I relax about the tumour worries?!

Dh had to stand on one leg with his eyes closed and walk in a straight line etc.

He’d already had an MRI scan plus a plethora of blood tests.

@Daisylion

The GP did some tests for BPPV (lying down and turning my head) which was negative. He then did a thing where I had to follow his pen with my eyes, and then another one where I had to alternately tap his moving finger and then my nose. He said I was really good at it! So not sure what that shows.

Can it still be Menieres with hearing not affected? I actually have really sensitive hearing (annoys my kids as I can hear what they're saying even if they're whispering in another room!).

GP said to try the betahistine and if it doesn't work then it probably isn't Menieres. That sounds wrong if it doesn't always work?

I can pay for a private referral if necessary, but would need the GP to agree to refer me first.

Can I relax about the tumour worries?!

No one of the diagnostic criteria for menieres is hearing loss. So if your hearing is fine then it wouldnt be md but it might be worth going to somewhere like specsavers for a hearing test just to be sure.

Dh’s hearing issues are intermittent. Also he heard different pitches in each ear occasionally or voices sounded like a robot (bit awkward for a music teacher)

What is your dizziness like? Any spinning sensations? Or more of an unbalanced or woozy or drunk feeling?

I've been told my intermittent dizziness is migraines, hormonal due to age.

I'd ask to be seen by ENT at a hospital to get it checked out further. You can't be living like that!

I had this and the worst of it lasted 3 three years. Post viral was their best bet. they thought it had affected one ear worse than the other- and I had a sinus and pressure feeling more in one than the other. The other thing that seems possible and has been suggested after the fact was vestibular migraines. With your slight blurred vision in one eye it could be a migraine thing.
I can't be of any use to you as I got no help whatsoever. They did an MRI, ruled out MS and sent me on my way. I was told it was post viral, then when it wasn't fixed I was told it was just one of those things.
There are loads of people who have this and v little help. It is unlikely to be anything serious. In the end I just sort of tried to rewire my brain to ignore the symptoms.
It is very distressing and debilitating being dizzy all the time so I feel for you.

Thank you for the comments. I sometimes get proper vertigo and it feels like the room is spinning but a lot of the other times it's more of a spaced out/drunk feeling, like I'm looking at the world through the wrong glasses and nothing is real. Really hard to describe!

The problem is that with health anxiety, even though I very rarely go to or call the GP, they like to assume everything is caused by my anxiety or that I'm exaggerating my symptoms, so I often feel like they don't really listen.

When I had labrynthitis I wasn't anxious at all about the dizziness and managed to ignore it and get on with life as much as I could, even if I felt like I was swimming underwater! But that was because I had a firm diagnosis that made sense.

It's the uncertainty and what ifs that I'm finding so difficult to cope with now. If someone could 100% tell me it's nothing serious and one day it will just go away without getting worse I could just ignore it and live my life the best I can. I'm just finding it so hard to cope with the uncertainty of what is causing it. I keep looking at my kids and thinking I might not have much time with them left 😪

I think you need to get your GP to refer you to a vestibular specialist within ENT. Make sure you go to a big hospital eg St Thomas' in London.

You may have a condition called PPPD, which is associated with anxiety. It doesn't involve spinning dizziness though.

Most doctors have never heard of PPPD, so it is hard to get a diagnosis and treatment. The good news is that you can make a full recovery with vestibular physio and SSRIs.

If you have any sinus issues then this can cause dizziness if your ear is sensitive to it. Despite my dizziness subsiding years ago, because it is raining today and v low pressure I am quite dizzy. I can feel a thunderstorm coming as I get weird sinus pressure and dizziness.

Wow, I've never heard of PPPD but the symptoms seem to fit. Medication taking 8-12 weeks to work is a bit worrying though! I will push for my GP to refer me but sounds like either will be either a long wait or expensive...

I also wondered if sinus issues are causing it as sinus/ears are closely related but the GP said the sinus issue was irrelevant. But as always I distrust what the doctors say unless I feel they are really listening to me and are specialists in that area!

I have sinus and post nasal drop issues. They contribute to minor glue ear.

I've had dizzy attacks/spells for years. I had the scans/tests etc years ago and nothing.

I've found mine is affected by having a cold, hayfever too.

Interestingly its got better and less frequent since getting my vitamin D levels up to the right amount. I think I had about 4/5 sinus infections one winter and it's because my immune system just had nothing to fight with.

I’ve had sinus issues all my life and hayfever and have had vertigo in the past. A doctor once gave me (privately) medication for it that works on the inner ear but then withdrew the prescription as it wasn’t compatible with breastfeeding so I never got to see if it worked but the vertigo only lasted a few more days thankfully!

Good luck @Daisylion

Most doctors have never heard of PPPD either.

@Daisylion

PPPD is not a bad diagnosis because you can make a complete recovery. The difficulty is finding a doctor who knows about it. However, now you know that is a possibility, you will be able to find an expert.

I could have written your post pretty much word for word. Five weeks ago I woke up one morning and everything was spinning. I was totally freaked out and I was clinging to my bed. I managed to get downstairs and call the doctor. He prescribed some pills and assured me that although incredibly unpleasant,it wasn’t caused by anything serious and was labyrinthitis. I was still terrified as I too have health anxiety and a vomiting phobia. It lasted in and off for three days then I was hit with an atrocious headache. That went in for a further three days. I was also feeling spaced out and exhausted. It started easing but since then I’ve been having periods of dizziness. It’s not as bad as the “vertigo,room spinning” sensation but I’m certainly very aware of it. I’ve also automatically diagnosed myself with a brain tumour and I’m scared to death.
The only thing that’s slightly reassuring me is that a very similar thing happened to me two years ago. That time,I was in the bath and laid with my head back and the next thing I knew,everything was spinning and I was gripping the side of the bath. I had to call my poor daughter to get me out! It also lasted about three days then and nothing further had happened since. I have a feeling,aside from a brain tumour,that it is a form of migraine because of the headache it left me with. I also went through my diaries and on both occasions it happened the day after I’d started a period so I’m guessing hormones play a part. I wish I could say to you not to worry but that would be like the blind leading the blind! I suppose I just wanted to let you know that you’re alone with how you’re feeling and if you have a tumour then so do I! Hope you soon feel better

Thank you. I'm definitely leaning towards it being PPPD. The GP is calling me tomorrow to discuss what to do. I really want a referral and tests just to rule out tumours etc. as I feel that once I know there is nothing fatal going on I will be able to cope with the symptoms much better.

Interesting about the link between PPPD and anxiety as I was really struggling with anxiety back in Feb when this all started. And then I feel like the ongoing symptoms are keeping the anxiety going.

Mine definitely seems to be provoked by visual stimuli, such as walking next to a complicated brightly coloured wire fence, walking through woods, and being in a big open field (felt like the clouds were swirling around me and I wasn't actually there!). It also gets worse when I go from outside to inside, and from inside to outside.

I just want to be able to live my life without feeling like I'm about to die every minute of the day!

Hey OP how are you? I have similar story to you, not sure how to link my thread to yours. Any updates?