Ongoing balance and dizziness
Posted , 5 users are following.
I have had theses symptoms gor two years and cannot get tid of the problem. I am 73 snd otherwise healthy. I have had tension in my neck and sjoulders all my life and have only recently recognised it as anxiety. And this condition means I am permanently tense. It started with a migraine aura then give days later I exprienced a few seconds of double vision. I would like yi think it is purely tension but I fear it isn't. I have periods of feeling a bit better but it all comes back. I am feeling better now but stagger if I turn my head yi the tight. Docyors and ENT and neuroligists cannot help me. My problem t oday is looking down at a table when I feel the surface is moving , wobbling. I eonder if anyone else had these symptoms and can advise me. I would like to talk to a an expert nut there are none in Uk, excrot gor in London and I cannot travel that far. I do not suffer nausea or spinning, bu falling forwards or sideways.
0 likes, 12 replies
lily65668 judyan20
Posted
Hi judyan,
I totally sympathise. I'm the same age as you and went through something similar two years ago. I didn't get any spinning or visual "special effects" but I kept finding that if I turned my head to the left too quickly I fell over backwards. Things came to a head 6 months after this started, when I fell backwards on a downward-moving escalator. Thank heavens it didn't happen on an up escalator or the consequences would have been too awful to contemplate!
My GP ordered an MRI of my neck, which just showed osteoarthritis and nothing else, and then sent me to a physiotherapist to get some neck loosening exercises. It cleared up after another 6 months and has never returned since. (I'm crossing everything as I write this!)
I think it's worth mentioning that I was going through a period of huge stress and anxiety while this was going on. Not anxiety about my symptoms, but about something else going on in my life. I'm convinced - and so was my GP - that it was all caused by tensing my neck and jaw muscles. I know I always tend to do this when I'm stressed.
If you've seen a neurologist, it doesn't sound as if there's anything sinister going on. I happen to be a former neuro nurse, by the way. Did they do an MRI or a CT scan? The ideal person for you to see would be a neurotologist - who specialises in conditions like yours - but I know the NHS is a bit difficult with referrals. (I should do - I worked in it for 10 years and dealt with it during both my parents' final illnesses.) If you can't get a referral to a neurotologist, perhaps you could ask to see a physiotherapist who specialises in vestibular (balance-related) issues. They can be really good.
judyan20 lily65668
Posted
I have had an MRI scan and nothing was found, I have seen an ENT otologist who said he was sorry he couldn't help me . I am interested that you say your problem began after a long period of stress as mine did too, so I am sure my neck is part of the problem. I go to a cranial osteopath but that has not helped so far. The physiotherapust was the one who gave me the VRT exercises but didn't mention my neck. Do you have problems with your eyes? On bad days mine feel stiff.
I feek well in so many ways but so frustrated!
lily65668 judyan20
Posted
No, I can't say I have much in the way of problems with my eyes, but I do know that this all ties in to general balance/vestibular issues.
I'm interested by your description of your eyes feeling "stiff". What do you mean by that? Do you mean you feel as if your eyes aren't moving the way you want them to, or is it that your eyelids feel stiff?
I'm glad you're doing VRT exercises. I believe they can help a lot but you have to do them regularly. However, a lot of people on these forums say you shouldn't do them for too long at a time, as they can sometimes make you feel worse at first.
judyan20 lily65668
Posted
I think it is the muscles that control eye movement that feel pulled when I am off balance. It's the vestibular ocular reflex not working properly I believe.
I find the VRT exercises invaluable. They are supposed to provoke dizziness in order to prompt the brain to recognise its mistake I am told. They do work but dont stop it coming back! I keep going but don't relish having this for the rest of my life
lily65668 judyan20
Posted
Aha! I recognise that "pulling" feeling. You might want to ask your physio if she can see this movement, known as nystagmus.
I recognise the sensation because I had an attack of benign paroxysmal positional vertigo (BPPV) at the beginning of this year. That's the one where the crystals in your inner ear get in the wrong place and start sending wrong information to your brain. It was just a coincidence, and completely unrelated to my balance problems of two years earlier (or your current problems).
BPPV causes episodes of violent spinning sensations, and I could feel the muscles pulling my eyes every which way during these episodes. It was really uncomfortable, so I can sympathise. The vestibular physio who treated me (very successfully) put video goggles on me during treatment, and saved the video. When I went back for my follow-up session, he showed me on the screen what my eyes had been doing during the various head movements and it really looked quite alarming. They were rotating quite quickly.
However, nystagmus is just part of having a vestibular problem of any kind, so you don't need to worry about it if it's been investigated and diagnosed.
And yes, that's my understanding of the VRT exercises too. I'm really glad they're helping you. I've a feeling you will have to keep this up for life, but maybe at a less intensive level that would just become part of your daily routine. I know there a lot of people in these forums who have experience of these exercises, and I'm sure they'll chip in with advice.
judyan20 lily65668
Posted
Thank you lily. I have just come home from a half hour walk without using my walking stick so there is some hope! My physio didn't offer any further advice offer anymore tests. I will get back to her
lily65668 judyan20
Posted
Sounds like progress! It might turn out to be two steps forward, one step back - these things often do - but it sounds as if you've got the right attitude, which can help a lot.
Waffalobill judyan20
Posted
After the dozens of tests I was finally sent a hour and a half up north to see a neurotologist. He's the doc you need to see.
lily65668 Waffalobill
Posted
Hiya Bill, How's it going now? I know you've been having a really tough time.
Waffalobill lily65668
Posted
No better. Have weeks it's real bad. Have to call specialist next week tell him doubling meds not working either. Had a upper endoscopy done couple weeks ago. Found Barrett's syndrome to go along with my acid reflux and menieres. Getting old sucks. Lol.
rocksolid judyan20
Posted
bertin_54 judyan20
Posted
Hi judyan20 .i am male from Canada and i have most of your syntome ,i was suposely to see he doctor here in Canada but he move to UK that all i know.is name is Dr Manohar Bance . Good luck .... Bertin.
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