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Labyrinthitis: Sarah's story so far (September 2010)
April 2009: a dizzy spell at work
I had a dizzy spell out of nowhere at work. All of a sudden I was really light headed and disorientated. As far as I can remember I hadn't bent or turned before the onset – one minute I was sitting there looking at my computer and the next – bang.
It lasted the whole morning – I actually lost my balance and staggered into someone and nearly went right over at one point – it must have looked like I was drunk and it was only 9:30 in the morning! I went for a walk thinking fresh air might help. Felt less light-headed afterwards, but decidedly groggy for the rest of the day.
Diagnosed with BPPV
Exactly a month later I had another dizzy spell – exactly the same as the first. It lasted until I went out at lunch then the grogginess settled in. This time I was groggy and disorientated for the whole of the next day too.
I then had another attack 2 weeks later and went to the doctor. He diagnosed benign paroxysmal positional vertigo (BPPV) and prescribed tablets. On checking out BPPV later I was surprised to see that I didn’t exhibit the symptoms – e.g. short bursts of dizziness; initiated by head movements - when I got my dizziness I now had it for a day, followed by a day of extreme grogginess, and it certainly didn’t seem to be triggered by me tilting or moving my head.
I took the tablets anyway but they didn’t stop an attack when it started – they just made me drowsy. I started to get my attacks every 2 weeks.
Stress and attacks
By July I started going dizzy weekly and an attack lasted 2-3 days. I would go to bed with it and it was there the second I woke up. This coincided with a really busy and quite stressful period in work. I definitely began to see some correlation between busy periods and the onset of an attack.
There was also a pattern developing – it always seemed to come on Tuesday or Wednesday and I would have it for the following 2 or 3 days. It was quite rare for me to start an attack in the evening or at the weekend – it was nearly always in work. This was now seriously affecting my ability to do my job. I was disorientated or couldn’t think clearly.
About this time I started to suffer extreme fatigue as well – I would go out to try to ‘clear my head’ – which was no longer effective – and felt like I could literally drop. The dizziness had changed too – it was less light headedness or the feeling I was off balance or would fall, to a dull muzzy grogginess – like my head was full of glue. I also occasionally got the sensation that the room was spinning round me or moving. I went back to the doctor and requested that I be referred to a specialist.
ENT consultants
My doctor didn’t seem to understand my condition and seemed surprised that it hadn’t gone. I said I didn’t see how it could be BPPV from what I had researched and he agreed to refer me to an Ear, Nose and Throat (ENT) consultant as this was now starting to have a serious impact on my life. I actually saw 2; one who said that he didn’t think my issue was serious and it was possibly some form of positional vertigo (but not BPPV) and that it should go and he would see me again in 6 months if it didn’t. The other consultant said it was ‘irritable labyrinthitis’ and I would need to see a physiotherapist and do ‘some exercises’ and I’d soon be as right as rain. Here’s where I think a lot of my problems started.
Physio brought my symptoms on
The physiotherapist he referred me to was unavailable so I rang back to the hospital and was advised that there was a physio there I could see. I was still going dizzy constantly for 2 to 3 days every week at this point (and it was now starting in the evenings or at weekends as well).
The physio conducted a full assessment and concluded that my issues were postural and we would need to do work on my spine before we could commence with anything else. As far as I know he never requested a copy of my referral notes, despite being based in the same centre as my ENT consultant.
I had a session every week and we would work on every vertebra and facet joint to loosen my spine in the upper back and neck region. This would bring my symptoms on; not immediately but later on that evening I would get the ‘muzziness’ or the spinning / moving sensation. I would generally feel terrible the day after a session – groggy with the awful ‘gluey’ feeling in my head. My head constantly felt like it was too heavy for my neck. I was now fatigued a large proportion of the time.
My physio said this was normal ‘treatment trauma’ and a necessary part of the recovery process. He also said that the road to recovery wasn’t like a straight line on a graph but up and down – so I accepted these ‘glitches’. In fact I had a 2 week symptom free period about a month into my physiotherapy sessions so was actually encouraged.
My physio also said my issues stemmed from being in an office environment and working at a desk and this also seemed to explain the fact that this ordinarily seemed to come on in work.
2 months after starting treatment I had an awful period when my symptoms seemed greatly exacerbated. This was in the run up to Christmas when I was fairly busy at work so I put it down to this. My neck also started to hurt all the time and I was getting shooting pains up the back of my skull to the right, all of which I told my physio and he dismissed as nothing out of the ordinary. I had never had neck pain before, despite my issues apparently stemming from ‘an office job’.
I was absolutely terrible all through January 2010 and would collapse on the couch when I got in from work, too exhausted to do anything. I didn’t go out at the weekends for the same reason. It felt like I was walking round with a ten ton weight on my head.
I then had a horrible physio session at the beginning of February where we worked mainly on my neck – the dizziness and grogginess settled over me straight away and I felt terrible, that evening and into the next day. I had to leave work early the next day and by Friday I was still bad. I was awful over the whole weekend and finally broke down on Sunday. I had had enough of it all. It was getting worse not better.
I tried to go into work on Monday and was absolutely dreadful – I made another doctor's appointment, although by this point I was in despair, doubting that anything or anyone could get rid of this.
Back to the ENT consultant
My doctor arranged blood tests thinking my severe exhaustion might be an issue with my thyroid and referred me back to the ENT consultant who seemed surprised that I hadn’t been doing Vestibular Rehabilitation Therapy (VRT) with my physio. I explained what we had been doing and the ENT said that my physio had not been doing the correct thing.
He said my condition had now gone on for so long and my brain had received that many ‘duff’ messages from my balance centre that they had stopped communicating as they should and my brain was now having to keep my balance. He explained that this was why I was so exhausted; my brain now had to work extra hard to do the work that my balance centre should be doing naturally. He also said ‘you’ll be getting the pressure in your neck and head now?’ which I was. I believe this happens as your vestibular system starts to affect your nervous system. He claimed they would ‘have me right by summer’ and referred me to another physiotherapist who specialised in VRT.
Vestibular Rehabilitation Therapy
I had my first session of Vestibular Rehabilitation Therapy at the end of February 2010 and was given a programme to complete several times a day. I was warned that the first week would be especially hard and that I would probably not be able to attend work. I was signed off for another 2 weeks and confidently told work that once I’d got the first week out of the way I was hoping I would be able to return. How wrong I was!
The second week was actually harder than the first. Some sounds now seemed to set off the dizziness and my ears would ache and feel sensitive. I started getting occasional tinnitus and certain sounds would go through me. Around this time I also started getting muscle aches and an ache in my head as if I was about to come down with 'flu.
A good day
My first good and almost symptom free day was in mid March. I was staying with my parents and I remember sitting in the kitchen that morning and my mum asking how I was.
‘You know what’, I said, looking around me ‘I think I actually feel ok’. It was that long since anything had looked or ‘acted’ normally that I could hardly tell. But I certainly didn’t have the dizziness.
The next day my symptoms suddenly hit me like a sledgehammer. I was back to the chronic exhaustion and felt awful. However over the next week I had 2 more good days, so I was encouraged that I was finally starting to come out of this.
Agony and exhaustion
All this time my neck had remained in agony. I asked my new physio if she thought my neck could be a contributing factor in light of this. She examined me and said that the facet joints on the right hand side were very stiff and we did some work to loosen them. She thought they possibly could be putting pressure on my vertebral artery.
I would try and force myself to go for a walk each day as part of my VRT but sometimes this was not possible because I was so tired – I have never known anything like it. My thyroid, and other blood tests, had come back normal.
Then I had 2 more gentle sessions on my neck with my physio and I was OK after 1 treatment. However after the second I got blurred vision immediately afterwards. This cleared up after an hour or so. Then 2 days after treatment I got up and suddenly felt like I would collapse. I felt immense pressure in my head and neck and had to lie down – I felt shocking. I was OK after an hour but wiped of energy again.
'That's not normal'
The next day I was fine – pretty much symptom free and more energy. However I lay down that night and felt the dizziness come over me in waves. On getting up the next day, within about an hour the feeling of pressure was back in my head, but also my neck and ears – they literally felt like they could explode. My head throbbed and I couldn’t stand pressure on the back of it – even lying on a soft cushion. Then the TV started to go through me – I couldn’t bear it even though the volume was low, and I had to leave the room.
I lay on my side and tried to read but my vision blurred and it felt like my eyes started slipping out of focus. The words started jumping on the page and flickering. I couldn’t sit up because the pressure in my head and ears was unbearable when I did and when I stood I felt like I would black out. This lasted the whole day.
It was only the next day when I was telling a friend that I thought – hang on – that’s so not normal. I was now so used to not seeing, hearing or feelings things normally that I had just accepted it as ‘another bad day’. Talking through these different symptoms made me realise just how frightening it had been. A ‘normal’ person experiencing symptoms like that would have been straight off to A&E. I had totally lost touch with what normal was.
Scans and vestibular tests
My GP was concerned and referred me back to my ENT consultant and I also saw my physiotherapist who was extremely worried. She examined my neck and said my facet joints felt much looser so became concerned that there could possibly be a restriction where the vertebral artery entered the skull. She gave me a letter for my ENT consultant advising that I needed a CAT scan.
My consultant couldn’t explain what I had been through on that day and said that my condition was ‘not following the usual pattern of things’. Because of this he referred me on for an MRI scan, CT / MRA scan and vestibular tests. He said that it was not my neck as I didn’t exhibit the symptoms of cervical vertigo, it was definitely my vestibular system, and that I would get better. He advised that I wouldn’t be fit for work for another 3 months.
Absolutely terrible
I was now absolutely terrible again. I could not read because the words jumped slipped or flickered and the white of the page seemed to flash and disorientate me. If I tried to force myself to read I quickly got shooting pains through my head or a dull ‘tension’ headache. Sometimes my sense of perspective went and things did not look right – it was like looking at the world through a weird lens. Also when I turned my head it took my vision a moment to catch up. My eyes also felt like they were slipping out of focus and I had a sensation that my head was being ‘knocked’.
Sounds were amplified and distorted and my vision was a law unto itself – brightly coloured objects looked weird or flickering. Busy stores were like a badly cut film with images and sounds falling over each other and battering my head until I had to leave. My parents' vividly patterned carpet was disorientating and their bathroom, which had bright white tiles, was terrible.
These symptoms gradually lessened, and by the beginning of June I was more able to do ‘normal’ things – eg go for longer walks as I had more energy and tolerate the lights etc in supermarkets and shops. I still got tired quite easily, but at least I wasn't exhausted.
Loss of function in my vestibular system
My MRI and CT scans had come back normal but vestibular tests proved that there was a 30% loss of function in the right side of my vestibular system. It was explained to me that this loss of function could gradually be getting worse – or even gradually getting better but there was no way to tell without another test in a further 6 months to a year's time. I was referred back to my ENT consultant to discuss the next move.
I received bad news in my consultation. My consultant now thought that there WAS an issue with my neck and because I had issues with this coupled with my vestibular system he though it unlikely that I would recover. He advised that I would have good and bad days my entire life and episodes like the one I was going through now. He also said I would always find busy periods would set off my symptoms as this would be total ‘overload’ for my brain and using the computer would be difficult. I tried using the computer to test this theory and within minutes my ears would feel tremendous pressure and hurt. I would get low droning tinnitus and then the other symptoms would kick in – my head would feel either too heavy for my body or floaty and would feel like it was being squeezed, my eyes would glaze and slip out of focus and the grogginess would settle in while the dizziness washed over me in waves.
The next step: a 3 month course of beta blockers
I saw a neurologist in July and he wants to try beta blockers to see if they would have an effect on the visual and auditory abnormalities – he thought these could be migranous. I commenced a 3 month course 3 weeks ago, and as my doctors predicted, these wiped me out at first but I am feeling a bit better this week so I am hoping they will have a positive effect now.
From reading other people’s posts on the net I have learned that a neuro-otologist is the best person to see and I want to look into this as the next step although my GP wants to wait until I have completed the course of beta blockers. So little seems to be known about this condition, even by the medical profession, that I just wanted to raise awareness and let others know that they’re not the only ones going through this.
Further information
If you have any questions about labyrinthitis, dizziness or any neurological topic, call the Brain and Spine Helpline on 0808 808 1000 or email helpline@brainandspine.org.uk.
You may also find these links useful:
