Vestibular Neuritis and VRT

Fortunately I have taken extensive notes over the past 13 months regarding my condition. I have pages full of observations, but I'll try to summarise the information.

Firstly, I would like to say my vestibular neuritis has been diagnosed as mild by my balance physiotherapist. It is still debilitating – but if I force myself through the discomfort of brain fog and dizziness, I can still function. It is still very unpleasant. I have reason to believe that many of the symptoms that plague me are not actually the VN but are in fact anxiety attacks. It is difficult to know where the anxiety attacks begin and the VN finishes at times – however, I have found if I can get my anxiety levels down, the VN symptoms either subside or are not noticeable.

Because of my VN, I have a prescription of Diazepam. I have never taken this medication to alleviate symptoms as I feel it will be detrimental to my recovery.

My VN manifests itself as a general disorientation with vertigo every few months. The vertigo is usually the first sign that the symptoms are back. The vertigo is completely disabling and doesn’t seem to have any pattern except that most attacks happen later in the day when my mind is exhausted. I have had attacks in the mornings, but my physiotherapist has put these vertigo attacks down to BPPV. He told me that people who have VN quite often have BPPV too.

I am quite fortunate with my vertigo - because whilst completely disabling, is usually very short lived. Symptoms will usually remedy themselves with in 60 seconds of laying down horizontally. I have learnt to control the panic attacks that come with vertigo and this really does make a huge difference to how nauseous I feel. On two occasions I had vertigo in locations where I wasn’t able to lie down and managed to arrest the attacks by sitting down and focusing intensely at a fixed point. And that was the key to it: The eyes want to drift, but I found if I concentrate intensely at a fixed point, I can stop the spinning. With all vertigo attacks I am usually left very disorientated and disconnected from my environment. I have right ear vestibular nerve damage so my vertigo attacks pull me to the right.

I had taken extensive notes of my symptoms before I presented them to my physio. He knew exactly what was causing the balance disorder from the notes I had taken. In fact, I encourage anyone who has an undiagnosed balance disorder to extensively list symptoms – as well as other environmental factors such as time of day, diet and general health. My physio said the notes I provided were a gold mine of information that he very rarely receives. It made it easier to diagnose my condition with field tests, as well as formulate a recovery plan.

My recovery plan was based on gaze stabilization, habituation exercises and general fitness exercise. I don’t exactly know what some of the exercises were called, so I will describe them and hopefully you will get what I mean.

Gaze stabilization

Gaze stabilization consisted of the following:

1.     Looking at a fixed point and rotating my head side to side as fast as possible whilst keep the fixed point focused. I would do this for one minute. I would then rest one minute and do the same exercise again, but nodding up and down instead.

2.     Keep my head still and shift my eyes to look at a fixed point to the side of my vision. Once I have focused on this point I turn my head to face this fixed point. Repeat the other direction. I do this for one minute. Rest one minute. Then do up and down instead.

3.     Hold my arm out in front of me with my thumb up in the air. Swing my arm in a horizontal arc whilst my head swings in the opposite direction. Keep my eyes tracked on my thumb as I swing my body back and forth. Do for one minute. Rest one minute. Repeat but do up and down instead.

4.     As I am walking along, every few steps turn my head to the side and focus on an object. After a few steps, turn my head back to the opposite side. Repeat for two minutes. Do this three times per day only.

The different exercises where introduced over six weeks with instructions to do the sets five times per day. My physio told me the key to all exercises was to keep all movements small. No large movements. For example, when rotating head from side to side, the head moves only about 10cm. It was all about small movements done as fast as possible.

Habituation exercises

I told my physio that I get dizzy in supermarkets and malls so he prescribed the following exercise: Focus on a spinning golf umbrella for one minute, three times per day. Included was exposure to supermarkets and malls by deliberately visiting them and increasing the amount of time I spend in them. 

General fitness

Part of the program also included walking 20 minutes per day. I would often do well in excess of this 20 minute guideline.

I did this program as instructed at the beginning of last year and my VN symptoms basically disappeared with in 4 weeks.

The symptoms have come back recently (I have a theory on this – but I will post another question on the forum as it is quite involved).

Whilst I followed the physio’s instructions precisely the first time, this time around I have tried to throw every exercise into the pot and do them all at once, five times per day. Additionally, I wasn’t taking one minute breaks between the individual exercises (to save time). I slowed this down the past two days – done less exercises per session and included rest periods – and It feels like it is having a positive influence. I am feeling much more lucid.

Other curious things

Along my journey I have found other curious things that appear to ease the symptoms of VN. Some seem contradictory of what would be expected:

1.     Coffee seems decrease the effects of VN for me. If I am feeling dizzy, a one shot coffee brings my right back.

2.     Long drives. If I am in a vehicle for a significant period of time, with lots of movement, I usually feel pretty good afterwards.

3.     Mountain biking. I am a mountain biker. This is my ultimate go to exercise for clearing the symptoms of VN. After each ride I never have dizziness. I had actually noticed this and mentioned it to my physio. He explained it in these terms: When I am doing the VRT, my mind isn’t fully engaged because my safety doesn’t depend on it. When mountain biking, my mind is incredibly focused on the task at hand, and that has a residual carry over when the ride is finished. Also, mountain biking is an incredibly balance focused and stress relieving sport.

Anyway, this is a run down on exercises and programs that I have found to work.

Interestingly, I have been doing balance tests and found my balance is, bizarrely, quite good. I don’t know what to make of that really. I do a field test where I stand on one leg, put my arms at my side, and close my eyes. From what I read online, a person my age (I’m 42), in good health, should be able to hold that pose for about 15 seconds before falling over. Strangely, I can hold this pose for up a minute on both legs. It makes no sense to me how someone with a balance disorder can balance so well with visual cues taken away. I speculate that perhaps when the vestibular system is compromised, all other parts of that system strengthen and become hyper reactive to any changes in body position. I don’t know what to make of it, but I thought I would add it for your records.

Anyway Jon, it was a bit of an essay, but I’ve given you all the information and observations I have at hand. If you want any further information on any part of this, feel free to ask.

Cheers

Rick