Loosing hope with Vestibular Neuritis

Ears, nose and throat
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To anyone who can shed some light or provide some positive words - thank you in advance. I have suffered every single day for the past 8 months.

I am a 24 year old extremely fit individual from Australia, who before this, was very happy with life.

On the 9th of August 2017 at 6:00am my life changed forever. I had just spent 3 days in bed with the worst flu of my life and I thought I had recovered enough to go to work - big mistake. Halfway during the journey I felt incredible dizziness - the world was spinning. I pulled over, threw up, and could no longer continue.

I went to my GP and he prescribed Stemetil - a vestibular suppressant which I no longer take - this is perhaps one of the reasons I have residual symptoms as it has slowed down the compensation process - I took 15mg daily for about 1 month.

I have seen two neurologists, an ENT, and a vestibular therapist. All of them believe this to be vestibular neuritis. I have done all the blood work (both from the GP and neurologist - so yes thyroid, B12 etc), a brain MRI, Spine and Neck MRI, ECG, audiology and neurological examinations - all normal, if not better than normal.

I have been told I am completely healthy and that only time and VRT will be the cure. Whilst I feel much better than when this initially happened thanks to VRT and naturally going about my day - I have some very dark days and the symptoms do not let up. Simple things like moving my head to look at my computer screen and walking among stimulating environments with bright lights and lots of people - make me feel terrible.

My symptoms include a constant sense of unsteadiness, dizziness when I turn my head (no longer vertigo like the initial attack but more of an comfortable lag), a sense of pressure in my forehead, and all the various anxiety related issues - which I have been addressing with counseling (I am no longer afraid of my illness).

If anyone is out there who has recovered from Vestibular Neuritis to feel 'normal' again - I really need your words right now. I am grateful, so very grateful, that there is nothing neurologically or terminally wrong with me - but this terrible illness is really diluting my confidence and joy for living.

I am open to the fact that this will take another several months to get better - but I need to know there are people out there who do beat this to get back to their normal lives. After 8 months of suffering - I don't know how much longer I can do this.

I will be seeing my neurologist again in 2 weeks to request caloric testing and a test for evoked potentials - I have not yet done these tests. I have also booked in to see the best neurologist in my city next month.

The neurologists and ENT are strongly convinced this is Vestibular Neuritis and nothing more sinister. I have not had any other symptoms - no muscle loss, no fainting, no numbness, optic neuritis, strength loss or anything else neurologically driven.

I will keep fighting but I really need a supportive community to shed some words of wisdom. Thank you to all those who read this.

 

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Hi there Magnanimous, I am so sorry to hear about your struggles. Vestibular issues can be a real problem, I fully understand. I’m 18 at the moment, in February of 2017 I began to get this awful feeling of dizziness one evening, and was even sick. Figured it to be nothing more than a nasty head cold and went off to college the next day, only to make myself feel much worse, and I actually ended up fainting. Was told by a doctor it was a minor infection and would clear up in a few weeks, but 6 weeks later I was still suffering badly. Went back to the doctor, who then referred me to a balance specialist. Saw him within about 3 weeks, he said it was vestibular neuritis, so the VRT began. Much like you, I began to experience some improvement and was eventually able to get on with most normal activities, but was still having interruptions from the symptoms and found myself being unable to do things like looking back and forth from my laptop, struggling to read or write for too long, busy places, that sort of stuff.

I had noticed I was experiencing bad headaches frequently alongside my dizziness and nausea, but almost every medical professional I said it to brushed it off. I’d been doing VRT for about 5 months when I finally put my foot down and said I wanted these headaches explored further, it didn’t seem like VRT was helping anymore and I was at my wits end with it. My balance specialist then referred me off to a neurologist. He was of little help, didn’t really listen or support me, he even turned around and asked me why I was there as he hadn’t read my notes! He told me it was all because I was depressed, I was depressed by the time I saw him in November as I’d been ill for 8/9 months, but that certainly hadn’t caused it as I wasn’t before. He told me if I was struggling to write and go out to public places, I was no better than his 4 year old granddaughter! I thought sod this and went back and told my balance specialist what he’d said, he was shocked and got me to see another balance specialist, who then got me referred to see another neurologist. I had GPs in the meantime suggesting if I just got my confidence back I’d feel much better (definitely wasn’t the case), as the neurologist had written them a letter saying his findings showed I was just depressed, and despite doing numerous tests in which I’d said I felt dizzy, he said I hadn’t. Luckily this didn’t get back to the second neurologist, and I then got my appointment with him. 

This long winded story has basically come to this point; the neurologist said had I ever considered it could be a migraine issue. I said I wasn’t getting the headaches all the time, and he said it didn’t matter as migraines, although usually associated with headaches, can actually happen without the headaches, and cause nausea, blurred vision, and of course, dizziness. Some further testing, including the caloric test, prompted the suggestion I went on propanalol, and I’ve been getting better ever since. 

It took multiple GPs, balance specialists and neurologists to finally get to my final diagnoses and treatment, which was vestibular migraine. My suggestion for you would be don’t sit back if you think they’re not diagnosing you correctly. Of course we’re not doctors, but we can tell if treatment isn’t working for us which would indicate perhaps their initial diagnoses was wrong. Of course, even if you do definitely have vestibular neuritis, it is very rarely an issue people have for years, and it disappears over time to the point any bad days are few and far between. 

It’s a scary situation and it can feel like you’re getting nowhere, but I got somewhere and I’m sure you will, too. All the best, I really hope you get your answers very soon x

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Emmyx,

Thank you so very much. Reading your

post has really put a smile on my

face. I am so happy for you - recovery must feel so nice. I will keep a note about vestibular migraine when I meet my neurologist in two weeks time. Thank you!

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Yup. Both of these posts sound so familiar. I’m 35, was a runner and loved working out. My dizziness started 3 months after a miscarriage, i never was ill or diagnosed w/ vestibular neuritis. It just started 9 months ago and never stopped. All the doctors, all the tests. I also did VRT which didn’t help much. Some days are better, today is awful. Moving my head, my eyes, my position, or even sitting still and trying to focus. It’s like this swimmy, bobble-head feeling. I’m at a point where idk what else i can do, which is why I’m here with you, looking for an answer. I think the migraine angle is worth exploring. I seem to be seeing that mentioned a lot, by people like us. Hang in there, i am too ❤️

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That is terrible to hear Christina - Sorry to hear about your troubles and the miscarriage - that is difficult. Please let us know if you find a cure to these terrible Symptoms.