Keen to hear from others coping with loss of balance

Hello all,

I’m new here, and while I’d felt a little unlucky to have suffered balance issues recently, looking around on this forum, I can see that there’s a lot of it about, you all have my deepest sympathies. I have a few questions and wonder if anyone has recovered from something similar, and would appreciate any advice or observations.

I’m a 57-year-old male and have had a near clean bill of health my entire life but suffered a total loss of the balance function in my right ear seven months ago, overnight, apparently due to a virus. Luckily for me, my hearing has only been marginally affected. I should also add that since day one, I’ve always been fine with my eyes closed and I sleep well, and I’m okay sitting down and working at a computer (I wasn’t for the first two months) or watching TV.

Labyrinthitis was mentioned at first, but the general consensus is that I’ve suffered from vestibular neuritis, although no-one seems entirely sure. I’ve been rehabilitating with what seem to be the standard eye exercises, alongside 30 minutes of yoga and balance exercises daily. I’ve always been physically active, a bit of a bull in a china shop really, and have attempted to carry on with as much exercise as I’m capable of.

After about six weeks I got on the static bike and then resumed running (straight lines only at first). After about ten weeks I started running around corners and then playing some badminton, crazy difficult for the head but no apparent ill-effects and only the odd stumble.

Despite still having a rushing sensation in my head, after five months I went out on the mountain bike. I was pleasantly surprised by my balance and bike handling ability but it left me feeling worse in the following days (I thought it might have been the fast downhill sections that did the damage). I’ve tried riding only on the flat since then but it still leads to feeling worse in the following days.

I want to return to playing football, but haven’t felt that I’m capable of that yet, too much turning involved.

In the last two months, I would say that my balance skills have continued to improve but the rushing sensation in my head has not improved and I’m inclined to think it’s even got worse – my brain just can’t keep up with my eyes and my head movements.

Am I trying to do too much too soon? I notice that advice on recovery suggests that it can take several years (and sometimes there is no recovery). I guess I thought that trying to do all the things I’m used to doing would lead to a quicker recovery but maybe not the case?

Also, just to potentially complicate matters, for several years before the virus took my balance, I’d been suffering (and continue to suffer) occasional migraines with aura – no headache but dancing vision that builds to the point where I can’t cross a road due to not being able to work out where the traffic is. I use that scenario because it always seems to occur under broadly the same set of circumstances and culminates with that experience. It happens approximately once every few months, always between 5.30 and 7.30pm, when I get up from an afternoon’s work, sitting down, and walk briskly. I can feel it coming on after about 15 minutes of walking, it takes about 10-15 minutes to reach its peak, by which time I’ve also got a cold sweat, feel shaky, slightly nauseous and need to sit down until it clears, which takes 5-10 minutes. However, if I exercise vigorously in the evening, it never happens, it always only occurs in combination with brisk walking, which baffles me?

I’ve learned that there’s a strong connection between migraine and vestibular issues, could my loss of balance be connected in any way to my migraines with aura? And is the ongoing rushing feeling in my head actually a migraine?

I’m kind of hoping that I don’t have migraine issues and that I just need to be a bit more patient and my vestibular rehab is on course but might take another year or so? I’ve learned that migraine issues have a lot to do with diet and I really don’t want to cut out the 5 C’s until it becomes my only option.

I’ve waffled on a bit, thanks if you’re still reading, it would be good to hear from anyone who’s experienced similar (although bad luck if you have).

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Welcome Adrian!

How would you know you lost all balance function? How do you know it was a virus? Inner ear viruses are dogma, not a proven in vivo manifestations. I believe the concept comes from studies of dead people, but who knows what happens after someone dies …

It’s one of those things a doctor says when they have no other explanation.

I can imagine more likely what you might have only lost is lack of sync between brain and your labyrinth - ie decompensation.

The labyrinth sensors are deep in a tissue matrix, and the idea the whole thing could be knocked out with a virus overnight, well, that would be extremely surprising!!

The body is waaaay better at defending itself than that!

Have you been tested for a degree of hydrops? That can distort and alter the characteristics of your momentum/gravity sensors via pressure and this could be the reason things are no longer calibrated.

So stay strong and positive, it’s probably not all gone, but perhaps your doctor is measuring your neurological response to your labyrinth which may be out of whack for now (so appears lost), but I don’t think this condemns you never to compensate (re-calibrate again).

Plus I cannot image your hearing being so unaffected if your entire labyrinth was destroyed!

Out of interest, what part of your hearing is affected? Did you wake up with tinnitus the following morning?

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Hi there, you must be James, I clicked on your profile and found out a bit about you – and that you run this forum, well done you.

Thanks for taking the time to read my post, and come back with a quick response.

I had some tests done at an audiology centre, the standard hearing tests revealed a slight loss in my right ear but nothing I’d noticed and then I had a test that measures the efficacy of the labyrinth, which entailed lying down with a mask on that, although pitch black to me, read the response of my eyes when first cold and then warm air was blown into my ears to stimulate a balance response. A normal reading is apparently about 25 in each ear. My left ear had gone up to 35 as it was attempting to compensate for my right ear, which had a reading of 2. I was told that the right ear would never recover but that the left ear would probably continue to rise as I learned to adjust. The audiologist was surprised that my hearing was only slightly affected, given that I appear to have lost nearly all balance function, in his experience because the two are in such close proximity to one another, if a virus takes one it normally takes the other.

I don’t know for sure that it was a virus but that’s all that anyone’s been able to tell me? It did (and still does) strike me as odd that I went to bed as normal, feeling fine and woke up with the sensation that my brain couldn’t keep up with the eyes. By the evening of the first day I was vomiting and needing to lie flat.

I don’t think I’ve been tested for hydrops. I didn’t know what you meant by that and had to Google it, and think you mean an accumulation of fluid where it’s not supposed to be – have I got that right?

I think that I did have an increased ringing in the ears when it happened and peculiarly (maybe significant) I was conscious of an increased ‘white noise’ in the ears in the weeks before this happened. Right now, there is a bit of low-level noise there but nothing too serious.

In my searching for help online, I’ve come across this site and several references to Dr. Shanmuga Surenthiran (including on this site). Is he the guy to speak to?

Thanks so much for being there. Glad to hear that in your case, you seem to have things under control.

Best,

Adrian

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Hydrops is an increase in pressure (can be caused by an imbalance of fluid in the inner ear but some theorise it can be caused by dysfunction of a little muscle in middle ear) That increase in pressure would also decrease high frequency hearing response as the sympathetic surfaces will be dampened. And that’s all it would take for sensors that require exquisite calibration to movement to lose calibration (for a while)

Hydrops of the inner ear is never very high pressure and cannot damage neurons directly.

So yeah don’t listen to explanation from doctors who can’t prove anything. Learn about the anatomy yourself. Sorry to say but that’s how bad medicine can be!

I would personally recommend Prof Saeed on Harley Street who does know his stuff and looks at all angles.

Thank you again James, and thank you for recommending Prof Said – I’ll investigate.

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Pleasure Adrian.

Don’t give up, do not catastrophize. I’m sure it’s very likely your bad ear will recover significantly but it can take time, and definitely worth identifying (if at all possible) what might have caused the issue.

I’ve been to hell and back and I got through most of it. I’m almost back to who I was beforehand (but improved in other ways).

Keep us posted!

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