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A Date with the Unexpected - Allyson's Diary

Contents

Summary
Symptoms Summary
Rough History
Start of Journal

Summary

First acute balance issues: Summer 2018
Number & duration of acute phase(s): (3) Two bouts of BPPV followed by an attack of Vestibular Neuritis four months later. The latter event lasted six weeks.
Any suspicious physical event/trauma leading up to dizziness: No physical trauma but a build up of chronic stress in the form of four significant events that happened between 2013 and 2018.
Start of chronic phase: January 2019
Age at chronic onset: 48
Started medication: Spring 2019
Stopped medication: Ongoing
Number & type of consultants seen to date: (5) Two audiologists (one NHS, one private), two neurologists (one NHS, one prviate) and ENT consultant (NHS).
Diagnoses received (one I’m “running with” first): Migraine associated vertigo
Medications used successfully for MAV: Trialling Amitriptyline (10mg nightly)
Failed medications for MAV: Sumatriptan 100mg tablets. Did nothing for the pain or dizziness
Non-pharmalogical treatment tried which helped: N/A
Non-pharmalogical treatment tried which didn’t seem to help : Trying acupuncture. Four sessions completed so far, with no real change in symptoms presently.
Dietary triggers identified: A work in progress but have suspicions regarding caffeine and red wine.
Any hearing loss in either ear: Not that I’m aware of. Future hearing test to be carried out in Feb 2020
Persistent or intermittent tinnitus and character: Persistent, high pitched tinnitus with fluctuations in sound from time to time.
Other chronic conditions I’m suffering from: Asthma, IBS
Medication I’m taking for other conditions: Inhalers for the asthma.
Any personal history of migraines: Suffered migraines with pain during my early adult years. No aura back then.
Any family history of migraines: Yes (my mum and sister suffer them from time to time)
Any history of ear problems: Yes. I had tonsils, adenoids and grommets operation when I was 7. My sister had the same and my mum also suffers with ears infections, random vertigo and motion sickness.
How did friends, family, and doctors react to your symptoms?: My family and friends were confused, sympathetic and frustrated that I was suffering with something they couldn’t help with and that was causing me so much distress. My doctor thought I was overacting and blamed it solely on BPPV, labyrinthitis and health anxiety.

Symptom summary

Presently I feel I’m running at about 60% in terms of daily life and overall functioning.

What’s Gone: Pulsitile tinnitus which I developed whilst having vestibular neuritis.
What’s Ongoing: 24/7 dizziness, marshmallow/travelator floor feeling, sudden dropping sensations (particularly at night when laying down to sleep), head pressure, ear pain, high pitched constant tinnitus, occasional headache, fatigue, visual vertigo and aura, sensitivity to noise, pins and needles in both arms and legs.
My Worse Day Now: Off kilter feeling upon waking up in the morning, together with pins and needles. Usually I’ll get head pressure fairly early in the day and this greatly increases the feeling of dizziness and unsteady floor sensation. My tinnitus starts to fluctuate and increase in noise and when this happens suddenly, it usually induces severe anxiety and panic i.e. what’s going on and how long is this going to last. I’m then fighting with myself to keep things under control and to prevent a panic attack (generally unsuccessful). I remain in this state for an average of 13 hours before I feel any symptoms start to subside. After a few hours of lower level symptoms, the whole process starts again.

Rough History

  • It all began when I was pegging out some washing in August 2018. I bent down to pick up some pegs and upon standing up, I felt immediately dizzy and nauseous. This lasted a few minutes and then I felt fine again and didn’t give it another thought. Two months later, whilst travelling on a bus home, I bent down to pick something up from the floor and the exact same thing happened. The dizziness was momentary but the nausea lasted an hour. After this I began noticing that I was feeling slightly off kilter a lot more.

Autumn 2018 - I developed a mild sore throat with no fever. I took some painkillers and the throat pain went reasonably quickly. A few days after that, I felt really dizzy and lethargic but put it down to being stressed and tired. I was out with my son and visiting friends but it was an incredibly hard day in terms of keeping my concentration and trying to fend off the dizziness. By the time I got home that evening, I felt incredibly nauseous and that’s when the vertigo kicked in. It was bad enough for me to take to my bed and stay there for the next week. I was very concerned that I had something really bad, like a brain tumour, because I had never had anything like this before. I saw a doctor a few days later who said it was BPPV and that I should try the Epley Manoeuvre. She gave me an info sheet about it and prescribed some anti-nausea medication. The medication got me out of bed and I was then slowly able to move around the house but it took several weeks before I felt anywhere near better and I was constantly left with a feeling of imbalance and something being ‘not quite right’.

Winter (January) 2019 - everything radically changed when I had a horrible panic attack which stemmed from just sitting in a cafe with my sister and then being completely overcome with a bout of vertigo. It didn’t last long but was enough to send my fight and flight response into overdrive. I had no idea what had caused the sudden vertigo but needless to say I panicked (big time) and went straight to my doctor’s surgery thinking perhaps it was my blood pressure. On this occasion my doctor told me it was just a panic attack but as I insisted I still wasn’t feeling right, she referred me to an ENT consultant for further testing. The ENT consultant confirmed I wasn’t symptomatic with BPPV and suggested I was probably still suffering with residual labyrinthitis. He referred me for an MRI scan (because of the pulsatile tinnitus and to rule out any acoustic neuroma) which came back normal. He also told me to carry on as normal in order to help my brain compensate as regards the ongoing dizziness. Strangely enough, I noticed that driving my car or being a passenger in a bus or train lessened the dizziness substantially!

Spring 2019 - I was still suffering with bouts of vertigo (mostly visual - busy supermarkets, computers, etc.), 24/7 dizziness, tinnitus, head pressure and I had developed constant pins and needles that I found alarming. I was thinking perhaps I had MS so I went to see my doctor again who relunctantly referred me to an NHS neurologist. However, as my MRI scan was normal she wasn’t overly concerned and told me that I should be feeling ‘very reassured’. She also suggested I start taking Amitriptyline (10mg at night) to see if that helped. During these Spring months, I felt constantly panicky, anxious, feeling like life wasn’t worth living any more and spending most days in tears. I couldn’t work out how an ear infection and a few dizzy spells had left me in an even worst state and with constant 24/7 symptoms. An appointment with an NHS audiologist around this time confirmed that I was symptomatic with BPPV and both the Epley and Semont manoeuvres were tried with little effect i.e. my symptoms remained the same. This audiologist also suggested I might have something called PPPD (something, back then, I’d never heard of).

Summer 2019 - This was when I took matters into my own hands and paid privately to see a neurologist as the NHS one hadn’t responded. This lady confirmed I had nothing sinister and suggested the head pressure was probably a tension headache and that the pins and needles (parasthesia) was an anxiety issue. She was the first person to acknowledge my age and the fact that I could be peri-menopausal, stating that fluctuating hormones were probably playing some part in all this. She agreed with the Amitriptyline medication but suggest I raise it slowly up to a maximum of 30mg per day as she felt the 10mg dose was too low and probably not giving me much benefit. Also around this time I saw a private audiologist. Despite being afraid, I let him carry out a series of tests, including calorics, which gave very high abnormal readings. He told me that this was consistant, although not strictly diagnostic, of migraine associated vertigo. This was the first time I was given a MAV diagnosis which went some way to explainining some of my weird symptoms.

Autumn 2019 - No real change to my symptoms. The only thing that had gone was the pulsatile tinnitus but everything else was the same. I’d tried to raise the Amitriptyline but that caused me further dizziness and so I panicked and kept it at 10mg nightly (which currently remains). I had another appointment with the ENT I saw in the Spring who basically stated that it couldn’t be vestibular neuritis any more and that my case was too complex for him. He told me he would be referring me to a Professor Bronstein at a hospital in London (to which I currently remain on the waiting list). He gave me some Sumatriptan tablets to take but they haven’t made any difference to the dizziness/vertigo or even the occasional headache pain. I finally saw the NHS neurologist in November who was convinced it wasn’t MAV but definitely PPPD. When I said about my age and the possibility of fluctuating hormones, he didn’t buy it at all and said it wasn’t related. He told me to stay on the Amitriptyline and wrote to my doctor stating I needed Vestibular Rehabilitation Therapy (I’ve been waiting months for this) and counselling to address the anxiety (I’ve been waiting months for this too). He then discharged me back to my doctor.

January 2020 - So we come full circle in my journey and I’m still suffering with the same ailments as I was this time last year. What I have definitely learnt these past 12 months is that I have a very confusing condition, if indeed MAV is definitely what I’m suffering with…but I believe this to be the case. It’s amazing that we can put a man on the moon but we can’t fix many a vestibular issue - as I moan daily to my poor, suffering husband! What has been more alarming is how this all hit me by surprise - it was, quite literally, a date with the unexpected. One minute my life was normal and the next I’m struggling to stand upright without feeling the floor disappear underneath me. With hindsight, it shouldn’t have been unexpected. I was chronically stressed when this this all came about and had had to deal with several life changing events: the death of a parent, a son diagnosed with Asperger Syndrome and needing to attend a specialist school; my sister’s marriage breakup and the subsequent removal of her children into care and my husband suffering with his self employed business (no thanks in part to Brexit) and landing us into substantial debt. On a more positive note, I have learnt a lot about myself - that I do have many things to be thankful for and that I am stronger than I think I am.

I also made the decision to go back to work, partly because a lack of money dictated but partly because I was becoming so lonely at home. I get times when I feel very unwell at work, as well as at home, but I do have some understanding colleagues and all in all it’s a welcome distraction to actually be doing something. At this point, I’m well aware I have rambled on far longer than I should have but it has been therapy, in some strange way, to write this all down and share it with you. Thanks for bearing with me.
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Start of Journal

So today, I’ve made a New Year’s resolution to stop using Dr. Google to check out symptoms. This is a habit I’ve had for a long time and I have been scaring myself silly. I need to stop this habit now and just accept the condition that I have. My plan (as of January 2020) is to continue with the acupuncture and herbal remedies. These are new things for me so it will be interesting to see how this pans out. I know it probably won’t be a cure but if it relieves some of the stress then that may perhaps be the catalyst for some small start towards recovery. I know that stress, anxiety, lack of sleep, fluctuating hormones (all relevant to me) can exacerbate things so that’s my starting point to this journal.

4 Likes

Hi Allyson. So glad you found the time to open a PD and what a full and informative account you’ve written. Absolutely packed with detail. In broad general terms I’d say it’s pretty similar to many MAVers and extremely close to the experiences of most perimenopausal/menopausal women. I can resonate with it completely. So similar to my own experience. Odd isn’t it how one imagines bring a ‘complex’ case, I’m one too, could be an advantage as it would gain interest when exactly the opposite proves true. I compare myself to being not dissimilar to an over complicated to use kitchen gadget. After a slightly raised initial interest it gets pushed back into an inaccessible corner of a cupboard out of sight and out of mind.

You speak of a referral to ‘a ‘Dr Bronstein’. Wow! I’d chase that one up pronto. Before you, wisely, put away searching on Google just check Dr Bronstein out. He’s written and been involved with more papers on vestibular stuff than pretty much anybody else around. Very actively involved in such matters. Quite a font of wisdom I imagine. Do getting chasing that appointment. Whilst I’d be anxious to get to see him I wouldn’t worry about VRT. With unstable MAV that’s virtually a guarantee for bringing on anxiety if you’ve a predisposition to it. With the Anxiety Counselling. Try on line Cognitive Behaviour Therapy. You can do that, without waiting, from your armchair! That could be worth Goggling too. Carol Vivyan comes to mind. Try it. Bear in mind if the anxiety is solely MAV related symptoms of both will reduce simultaneously.

Vestibular issues are obviously the more complicated. And unfortunately dizzy people and most particularly, dizzy middle-aged ladies I fear, don’t make headlines. In fact they barely raise a yawn. The amount of suffering and disruption vestibular events can cause just isn’t widely understood.

Great read. Glad you are getting into the right mental groove to cope. That’s more than half the battle. Helen

2 Likes

He was recommended to me by Hain (I never ended up pursuing as I found my current Doctor who is as good as you can reasonably expect given where we are with the science (clue: not very far)).

I’d be very interested in your experience with him though @Allyson

PS Thank you for using the standard pro-forma for your summary :+1: I’ve made it a Wiki so you can keep the summary up to date :slight_smile:

2 Likes

Many thanks @Onandon03 and @turnitaround for your replies. I was really worried that I had made the history too long but it has certainly been quite a journey. In the back of my mind, I wanted to try and reassure others that it has taken an eternity to get some kind of diagnosis with many twists and turns along the way! However, perseverance is key.

I will definitely chase up my appointment with Dr. Bronstein although I’ve been told (surprise, surprise) there’s a waiting list. That’s the one thing I have learnt with this condition - patience. I promise to report back though so watch this space. I’ve also installed the ‘migraine buddy’ app on my phone (as mentioned somewhere else within the forum) and that is really useful in recording attacks and associated symptoms. I’m certainly using it to identify triggers and to watch for patterns.

Thanks for making the summary into a Wiki too. It’s appreciated.

2 Likes