The Vestibular Disorders Support Community
Read our welcome post, user support wiki & visit our member recommended products page

Bilateral Vestibular Hypofunction

Hi All, Been advised to place this thread on here to hopefully help fellow sufferers or those who are struggling to find a definitive diagnosis with vertigo/dizziness symptoms. Please note however that this is only my experience and people should not assume of any diagnosis until confirmed by a Medical Professional.

Just a quick back story. When I was 21 back in 1989 I woke up one day spinning, or at least the room was. Really struggled with this dizziness but being 21 I honestly don’t think much was done at the time by the GP’s etc. Maybe it was my age that didn’t indicate anything “serious” but I don’t have any notes from that period on diagnosis/treatment. All I remember is that it lasted around 8 months and bar having to stop playing tennis, because my eyes couldn’t focus on the ball whilst serving, as time went on I was ok again and “learned” how to play football again etc.,

Had many years symptom free until 2008 when bang, it happened again. This time I had more tests including MRI’s and that’s when I first heard the phrases Migraine Assisted Vertigo and Vestibular Migraine, although I never once suffered headaches. Bizarrely this all lasted exactly 8 months again and symptoms subsided although never quite disappearing to 1989 levels.

Fast forward 2016 when it happened again out of the blue. This time I was really struggling with constant spinning episodes and it wasn’t getting better. MRI’s, tests all repeated and MAV was once again put forward as a diagnosis,. Various medications were tried but none worked. Unfortunately this time it didn’t stop after 8 months and I had a long battle, which I eventually lost, against the powers that be because I couldn’t walk properly let alone work! This was, as many of you know, really debilitating and exhausting. Nothing worked and all I had as a diagnosis was, it might be this, or it might be that.

Then I found this site and upon some wonderful advice from a member, turnitaround who, suggested I ask my GP to refer me to the Royal National Ear Nose and Throat Hospital in London. After more tests, but many somewhat different that before, the wonderful Consultant finally diagnosed me 100% in having Bilateral Vestibular Hypofunction., Without getting all medical, that basically is the balance mechanisms in the ears are, well, knackered, although the reason why will unfortunately always remain a mystery. There were possibilities. I have a deep scar on my retina that I have had since I was young that was caused by Toxoplasmosis, and that can be a cause, but in my case I was tested for the parasite and I do not have it. I also lost much of my hearing when I was 2 years old, possibly due to a reaction to the Whooping Cough Vaccine and that “may” have been a cause but again no proof either way. Then the most possible of possibilities was the fact that I had Glandular Fever when I was around 20/21. That’s closest to the first “attacks” but again there is no way of proving either way.

What is known is that it is permanent. One ear is far worse than the other but at least in my case whilst symptoms may come and go the damage is probably the same now as it was when I was 21 so hopefully it won’t get worse.

At the Physiotherapy Department at the Hospital I had several sessions of Vestibular Rehab which were reasonably successful. You don’t realise until you see the results from one session to another that in my case anyway there were small improvements being made. With me as well being in that Rehab Centre made me realise how fortunate I was. The reason being that many of the others there had far greater disabilities and limitations than I. When you see people who have suffered from strokes or spinal injuries I honestly didn’t feel I should have been there but I cannot fault the fantastic professionalism and empathy from all the staff there who convinced you that you do have a difficult condition to manage and you are deserving of their wonderful care. It did make me realise though that there are always people worse off.

Due to improvements, and that fact that I had a diagnosis I was discharged but always welcome to return if I need to. 5 years on from 2016 I still suffer with a certain wobbliness and my head can become lighter than my body and things still move when I move my head but all in all I can actually live and I now don’t worry about the diagnosis anymore because I know what it is and I know nothing can be done 100% to cure it,yet, but that comforts me as I know I and the medical fraternity can do no more.

So the main reason for this thread is that there is hope and if you are struggling for a diagnosis I cannot promote more a request to your GP to refer you to the Royal National Ear Nose & Throat Hospital in London or the equivalent in your Town or City. They were brilliant in their full diagnosis and whilst they couldn’t provide me with a cure their aftercare and support was nothing short of outstanding. Thank you also to turnitaround on here who suggested the place and also Onandon03 amongst others who have been a source of wonderful support. It really has helped me mentally and physically.

Good luck.

3 Likes

Thank you for this, it is very interesting. I hope this helps someone.

1 Like