Please Help! Diagnosis Unknown

Ears, nose and throat
1

Hello, I am new to this forum.

I have been suffering for almost 3 year with severe dizziness spells, and I was wondering if anyone could shed some light into what might be going on.

I've just had my first appointment with the ENT (Ear nose and throat specialists) and have come away feeling like the doctor really didn't want to listen to me. The specialist told me that it sounds like I have disequilibrium and is sending me for a vestibular test. However, the way he described this was that head movements trigger the dizziness. I do pole fitness, which involves being upside down, and spinning around-which does not trigger dizziness! I had a hearing test whilst I was there, and they used a pressure tester, which told me that one of my ears is effected more by the pressure and doesn't 'bounce back' like the other.

My Symptoms

• Random attacks of dizziness, can be when I wake up in the morning, or from just sitting at my desk at work

• Symptoms usually last at least a day, can last up to 3/4 days

• Happens every week or 2 weeks, with at least one episode that is so bad I have to go home from work

• I suffer with headaches

• The actual dizziness feels like I'm moving more than I am, and I just generally feel off balance. I really have to concentrate to work.

• None of the medications I have taken have worked. Betahistine made it 100% worse, I could barely walk for a week

I've had my eyes tested, cut refined sugars, had the epley manoeuvre at the doctors, stopped active exercise (pole fitness gym etc.), none of these made a difference to the frequency of the attacks.

2

Vestibular test will tell more hopefully. If it's a VNG it will tell a few other things. They do a few things and track eye movements. Shows them your reactions to lights moving,they use warm and cold air or water to test vestibular response. I just had it all done again. So hated it again.lol. Unfortunately meds only help for some disorders. They need to narrow it down with tests. Will probably send you for rehab.

3

Whatt did the hearing test show?

Eleftherios S. Papathanasiou, PhD, FEAN

Clinical Neurophysiologist

Fellow of the European Academy of Neurology

4

You may want to look into Vestibular Migraines.

5

Thanks for your advise. I'm just worried that I'll be fobbed off, as I have been done for the past almost 3 years now. It effects me at work, I can't drive etc. Hopefully this vestibular test will come back with something they can fix. I'm feeling better about it with just some different ideas of what could be going on, rather than thinking I'm losing the plot and imagining this dizziness

Thanks again 😊

6

Hi

It's showed a small difference in my right ear being slightly down. And the thing about the pressure not being right

Thanks 😊

7

Hi

I will look into this, I used to get migraines in my teenage years , quite often. Those effected my vision. I don't have those symptoms anymore

Thank you 😊

8

It's not imaginary that's for sure. I call it the monster. The monster trys to find you. It can tell if your feeling good and enjoying life. That's how it finds you. It gets mad if you find a way to hide from it for to long. I been fighting it off for a long time. This time it has me and dosent want to let go . I was to hard to catch. Usually the excercises loosen it's grip. This time its not working for some reason.

9

That's such an accurate description! I also feel like because people can't see what's wrong with you, they think you're fine. Hopefully you feel better soon!

10

Hi try cinnazine you can buy it from the chemist 15mg it's a travel sickness tablet .works for me. I've got the doc to prescribe it now. I found it better than beta histamine and I can go out jogging and cycling. It can make you drowsy so try one first. My hairdresser had vertigo for 7 years and only uses this now when her symptoms are bad.

11

Thank you Liz 😊 I'll give that a go

12

I have vestibularneuronitis. Into my 15 th year now but it's only when attacks happen i cant do anything. Rest of time it's mild. But i still drop things and walk into things too