Balance, dizziness and tinnitus.: Hi all, I'm... - Tinnitus UK

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Balance, dizziness and tinnitus.

penelope2 profile image
10 Replies

Hi all, I'm new to this part of HU.Does anyone get dizziness and balance problems with tinnitus (one sided only)

Have been under the ENT department and they were not very helpful, this was 3 to 4 years ago.

Wondering if a hearing aid would help and considering going private. I also have a neurological condition so it's quite difficult to say one condition ends and another starts with regard to the balance and coordination.

Other people's experiences would help.

Thanks

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penelope2
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10 Replies
Happyrosie profile image
Happyrosie

Penelope, I’ve seen on this forum that other tinnitus sufferers also have dizziness and I do too. If they are medically linked I don’t know.

What I do know is that new recommendations were issued by the National Institute for Clinical Excellence (NICE) in early 2020 to doctors for tinnitus. You can look at these by going to NICE website and input‘tinnitus’ to their search box.

Armed with this information you could return to your doc for further help.

As far as hearing aids go, yes they do indeed help tinnitus The real world is made more prominent so the T fades into the background. No need to go private unless there are long waiting lists in your area. ENT should help on both issues.

The British Tinnitus association is a wonderful source of information about this and other tinnitus related stuff so go to their website.

penelope2 profile image
penelope2 in reply to Happyrosie

Hi Happy Rosie. Thank you for your reply.There is some good advice there. I forgot about NICE so will research this. Unfortunately the cerebellar ataxia is not covered by their guidelines so the NHS wheels turn very slowly added to that waiting times!!

Take care

Mscull-80 profile image
Mscull-80

hi Penelope. I’ve had T for around 6 years now and dizziness/vertigo started around 3 years ago. At first, severe bouts along with nausea and general incapacity to do anything except sleep it off for a couple of hours. This seemed to be brought on by loud noise, anxiety & was directly linked to my T getting worse for whatever reason. Was diagnosed as Menieres for which I’m told there is no real cure. Over time the dizziness has become less intense & regular, as soon as I feel it I take Buccastem which relives the symptoms in around 15 mins for me, I wear earrings aids but have to be careful of my environment and adjust the volumes before triggering T.

penelope2 profile image
penelope2 in reply to Mscull-80

Hi Mscull 80. Thank you for replying.Just looked up Buccastem, it relieves nausea and vomiting associated with migraines.

Ménière's is not my problem, but interesting I had chronic migraines with vomiting many many years ago.

Hope your condition improves, feeling sick is horrible.

TurboTrace profile image
TurboTrace

Yes I have T and dizziness. It's now morphed into BPPV. I have to do the Epley Epley Manoeuvre several times a day to stop it 😔😔

noisynora profile image
noisynora

Hello Penelope2, So sorry you didn't get much satisfaction from your ENT appointment several years ago. I had the opposite experience at Swindon ENT last year. I had to wait 2 years for the appointment but my goodness how my life changed after being under their care. I too had, not so much dizziness, but more balance problem. i.e., would want to walk straight but my body would veer to the right. I had had labrynitis several years ago which caused severe dizziness then and unpredictable balance problems but this wore off. What returned 3 years ago was hearing loss in one ear (the left) and the beginning of tinnitus which reached horrendous heights and I felt myself turning into an anxious wreck. Quite appalling. The Team at ENT confirmed hearing loss. I had a hearing aid in one ear to distract the tinnitus, which helped a lot. I had CAT scan to check there was nothing untoward going on. Had vestibular check. But most of all, it was the hour long chat I had with one of the practitioners there. She also had tinnitus and listened to what my experiences had been and told me that no matter how bad this gets, they are there for me and they can help. It was the 'understanding' and compassion of the staff that really did it for me. And I left the hospital on air. From then on (I had had three sessions in all) I felt more in control as I had been given the confidence to use the tools they suggested to cope and of course I actually felt so different. After a short period I felt calmer and after about 2 months I wasn't thinking of how bad my tinnitus was, I just learned to accept it. They call this 'habituating'. All that said, I had a bad spike recently, wondered if it was weather pressure change or something. It took me by surprise, as I thought it would never return, but I thought well, this will pass, its having a bit of a party at the moment. Our brains make the noise because of the hearing loss element, so I play soft music or put my aid in if it gets really bad and will myself not to give the T all of my attention. As I type this I know my T is making an 'interference' sound, like when you tune a radio but I do get typewriter clicks and have experienced a motorbike revving up noise. Its all random. Used to be scary but honestly, hand on heart, we can cope on the whole. This forum of people are going through the same thing and its been so helpful to chat to people who understand. I do hope you will persevere and get the treatment you feel you need.

rabbits65 profile image
rabbits65

yes I definitely have some balance issues when I get up. Occasionally I get a bit dizzy but that’s got a lot better.I hope you feel better soon.

Beagleears profile image
Beagleears

Hi Penelope I have had tinnitus and vertigo for a couple of years now. I am waiting for an ENT/audiology appointment as I have been told I have some hearing loss. I had a hearing test at boots but I felt a bit pressured by them to buy expensive hearing aids and I didn't like it. So I said I would think about it hence waiting for my appointment to get a proper diagnosis. I really hope I get a good experience like noisynora as my GP experience hasn't been good. After a lot of hassle with my GP I finally got taken seriously as the vertigo was badly affecting my life and mental health so they tried a few medications and for me betahistine is the one that worked. I am pretty much vertigo free. I have a feeling of being off balance sometimes as if I'm on a boat but no merry go round vertigo since taking the betahistine which has been a great relief because it was really scary and I had several falls because of it. Tinnitus still the same but some days it's very loud and irritating but overall I can cope with it most of the time. So you are not alone with this horrid illness many people on this site seem to suffer with a combination of dizziness/vertigo and tinnitus that changes in volume and nausea. We all respond differently to various medications and we all try to find a way to cope through trial and error. So tips and hints you get here are worth trying to see what will work for you.

Sorry for long post take care.

penelope2 profile image
penelope2 in reply to Beagleears

Thank you for sharing this, I can tell what a dreadful time you've had. The betahistine is interesting, I was put on this year's ago and it didn't help, but maybe worth another try.Our gps have been put into special measures as they are failing at so many levels which doesn't help.

Good luck

surreycccfan profile image
surreycccfan

Hi, Yes I had dizziness when I had an inner ear event which resulted in my T, hearing loss and Vertigo. As another user mentioned I made sure I followed the NICE guidelines and got a full diagnosis for all 3 conditions. My dizziness was diagnosed as Benign paroxysmal positional vertigo (BPPV). It may be worth going back to your GP to get an ENT diagnosis of your dizziness. I know this type of diagnosis helped me as allowed me to feel grounded in that I knew nothing sinister was wrong and allowed me to focus on the techniques I needed to put in place to live well with my T. As an FYI I managed my BPPV with Brandt Daroff exercises.

In regards to the NICE guidelines on Tinnitus (nice.org.uk/guidance/NG155), it’s a rather lengthy document so it may be worth looking the flow diagram in the supporting information (nice.org.uk/guidance/ng155/... which shows the treatment options but also most importantly on the second page that you should have a management plan in place.

Hope this helps in some small way. Stay safe.

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