Dizziness - any similar experiences?

[AlexBrad]

I have experienced recurrent dizzy spells for the last 5 years. Usually every 6 months or so, lasting from a few days to a few weeks. Have seen an ENT, had a CT scan, hearing tests etc and it’s been concluded it’s an inner ear issue. I can take medication for it but for no longer than 3 days or it apparently starts to impact the brain’s ability to control balance itself.

The dizziness is inside my head rather than outside - it doesn’t feel like the room is spinning, it feels like my head is spinning on the inside.

I have been experiencing my current spell for 8 weeks and it is awful. It is intermittent so some days I feel ok for most of the day and some days it is constant. A few times I have had huge waves of it where I feel like I am going to faint.

This is causing me huge anxiety which can’t be helping and I feel like I am at my limit of what I can cope with.

I am going to get a GP appointment tomorrow but am not too hopeful as they previously just shrug their shoulders and don’t offer much help.

Just wondering if anyone has experienced similar?

I have had similar and keep meaning to do a post to see if anyone else feels like it. It is really hard to explain it to other people, but it feels like somebody is shaking my brain in my head, or washing up inside my head, jumbling it around. My head feels like there is a tight band around the front of it. I can't cope in a room full of noise. My ears keep fluttering. It comes and goes, but at the moment I have had it constantly for over 4 weeks.

I can get vertigo when I am sat down, and my balance is shot. I get prescribed cyclizine for the vertigo but only if I ask for it. GP initially put it down to acid reflux.

I did come across a thread on facbook about Fybromyalgia and people feeling like this. Doctors have suspected Fybro for me and I am on gabapentin for nerve pain in my face, but they won't make an official Fybro diagnosis.

How old are you? I’m peri age and sometimes feel like my brain is turning within my skull, rather than actually feeling dizzy.

I had horrible bouts the vertigo for years was being told to do exercises which didn’t do much and I no crystals in my ears, so not Benign Paroxysmal Positional Vertigo. . It turned out to be related to the cold sore virus! cause when I get mouth ulcers or be rundown I would get a tingling up past my ear and vertigo so now the GP gave me acylovir and it’s gone after three days… my God, was I sick though.

I’m sorry you’re experiencing it too, it is horrible. I have been given cyclizine but told to only take it for 3 days - even though I took it for 4 months once for pregnancy sickness.

I am 43, on my list of things to ask the GP tomorrow is if it could be hormone related.

That is interesting, I think tomorrow I need to beg the GP to investigate all possible causes

https://my.clevelandclinic.org/health/diseases/persistent-postural-perceptual-dizziness

As soon as my mother was diagnosed with this, anxiety of what it was reduced which helped, but she also had the confidence to force herself to act normally, allowing her ears to naturally rebalance. Before that she’d done less and less because of the dizziness which was the worse thing she could do.

Thank you so much - can I ask if she had any physio or similar which helped?

No, she just very gradually increased what she was doing- pushing through the dizziness if you like, rather than becoming increasingly inactive which is the natural thing to do when you are feeling dizzy.
I think the relief that it wasn’t anything serious, and could be improved, helped her anxiety about it all - and that in itself helped. It was sort of a vicious cycle.
It isn’t in the head, it’s a real thing, it’s just not very well known about.

Does the article resonate with you?

It started off from a slight virus which affected her ears, then didn’t get better - probably as she was so anxious about being dizzy, and was giving into it by sitting as still as she could, rather than letting her ears rebalance by pushing herself out of her comfort zone

Actually I’ve just remembered, she did have some exercises to do. I’ll see if she still has them.

She said the consultant googled “pppd exercises to do”, when she was in his office and left her to do the same at home.

Thank you - it does resonate although I have pretty much been pushing through as I have to work, look after my kids etc. I wonder if some sort of exercises might help. Thank you for sharing!

https://headsup.co.uk/pppd/

It says anti depressants sometimes help short term. Maybe worth discussing with the doctor tomorrow

This sounds like labyrinthitis, which is an inner ear infection. I had it about 20 years ago and I remember being surprised that the GP diagnosed it by looking at my eyes. Mine was obviously a much milder version than yours and it went after a few days. I have been having similar symptoms for the last couple of days so am assuming it is the same thing and am hoping that it won’t last long.

Last time I was prescribed something that is normally prescribed for sea sickness, but as each episode lasts only for a few seconds it doesn’t seem worth taking anything.

Hope you get some answers.

Sorry to hear you’re suffering this, it’s horrible.

I’ve had similar for 3 years, it comes and goes. I’ve been to ent and closest thing to a diagnosis I’ve had is that it’s vestibular migraine.

I’m not sure about that as it really feels like it’s to do with my ear.

i’m back on waiting list for ent, but so far no help for symptoms.

hope you get some help from gp

I worked with a woman who struggled with dizziness. It was all to do with hormones and perimenopause. She was given exercises to do and HRT and is much better.

I had this constantly for four months. Came on with one sided tinnitis. Couldn’t work, couldn’t drive. Not so much dizzy but real lightheadedness. Was given Betahistine and cyclizine. MRI scan was clear. I saw a balance physio privately and after testing was diagnosed with bilateral vestibular hypofunction. No idea of the cause. I did vestibular rehabilitation exercises several times a day to retrain the brain and eventually it subsided. Hideous while it lasted.
Three years on, I still have the tinnitus.
Have always been prone to nausea, vomited all the way through pregnancy and get terribly travel sick.

Mine isn’t the same thing - I have vertigo (BPPV). It started when I did ivf a few years ago. I lived with it intermittently coming back over the last few years but then a few months ago started taking the progesterone only pill for other issues (digestion) and i haven’t had any vertigo since, so I think it was definitely hormonal induced. GP was no help. It seems dizziness is just something we’re expected to live with.

might be worth exploring your hormones.

I just take stugeron as soon as I feel it coming on - works a treat

I had this around the time of my coeliac diagnosis. My nutrient levels were really messed up -super low iron, questionable B12 etc.

I would sign up to talking therapies NHS - they frequently deal with this kind of problem and how to handle it, especially the anxiety behind it

As someone else said BPPV? I was given Betahistine, common in women of prei/meno age caused when crystals in the middle ear dislodge, Might be worth asking about

Thank you so much for all of your replies - I am sorry so many of you have experienced it too.