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Lindsay's Diary

Contents

Summary
Symptoms Summary
Rough History
Start of Journal

Summary

First acute balance issues: Diagnosed with Vestibular Neuritis in Sept 2018
Number & duration of acute phase(s): The Vestibular Neuritis seemed to phase into Vestibular Migraine over a number of weeks
Any suspicious physical event/trauma leading up to dizziness: The Vestibular Neuritis made me very poorly for two weeks. I started rocking after a weekend on a canal boat during which I’d had a sore tongue and throat (there was a virus going round my family). I then started to feel very unwell - as if I was in a dream. I then became achy and got a high temperature which sent me to bed for several days. I haven’t been right since.
Start of chronic phase: October 2018
Age at chronic onset: 41
Started medication: Oct 2018
Stopped medication: N/A
Number & type of consultants seen to date: 1. A Neuro-Otologist.
Diagnoses received (one I’m “running with” first): Visual Dependence caused by poorly compensated Vestibular Neuritis thus triggering Vestibular Migraine.
Medications used successfully for MAV: Amitriptyline 20mg, Verapamil 120mg and Venlafaxine 75mg
Failed medications for MAV: Propanolol
Non-pharmalogical treatment tried which helped: Magnesium, Vitamin B2 (no idea if these have helped but I take them every day at the advice of my doc. I use my Cefaly Device every night that seems to help headaches and relax me. I slept under a weighted blanket for several months when I used to wake up feeling as if I was floating. I am also doing Vestibular Rehab which is definitely helping.
Non-pharmalogical treatment tried which didn’t seem to help : Accupuncture. Cost lots of money and was very relaxing but didn’t help at all. I also drank some Chinese herbs. Didn’t help and they were mingin’.
Dietary triggers identified: None at all. At one point I was pretty much living on a diet of brown rice and porridge as everything seems to be a potential trigger if you research the interweb! As I introduced foods back I haven’t noticed anything that affects me. Having said that I still avoid the ‘6Cs’ and some things from the ‘Heal your Headache’ book. I am dead skinny and haven’t done anything to embarrass myself for a year as I no longer booze. There’s always a silver lining! :wink:
Any hearing loss in either ear: No
Persistent or intermittent tinnitus and character: My ears ring constantly but they did before I had any other problems. I also get intermittent noise that sounds like a distant road.
Other chronic conditions I’m suffering from: None. I am otherwise as fit as a fiddle!
Medication I’m taking for other conditions: None
Any personal history of migraines: Yes. I’ve had Migraine with Aura since my late teens. Flashing eyes for 30 mins followed by a mild headache maybe 3 or 4 times a year. They never bother me much.
Any family history of migraines: My Aunt suffers with Migraine with Aura too.
Any history of ear problems: No.
How did friends, family, and doctors react to your symptoms?: All my family and friends have been incredibly supportive except my so-called best friend who got bored of the whole thing after about 9 months, deciding that I was in denial about having a ‘mental breakdown’ following some research that led her to conclude that the whole thing was caused by bad bout of anxiety. While I have at time been in a very dark place with this condition I am in no doubt that the root cause of my condition is physical.

Symptom summary

(Your current state)

What’s Gone: (what symptoms you had but no longer get) Constant light and sound sensitivity, ear fullness, the constant awareness of my heart pumping away in my chest. Feeling of floating while in bed (a bit like sleeping on a flat-bed on a plane).
What’s Ongoing: (what symptoms you still get) Feeling of imbalance and dizziness, fatigue, sore eyes, ear popping. Mild headaches here and there. My forehead generally feels strange although much improved from the start. Depression and anxiety when I feel like I’m never going to be better!

My Worse Day Now: (description of the worst day you get now) Imbalance and dizziness, maybe a headache and sore eyes. Mild sound sensitivity and fatigue. By far the worst part of a bad day is the anxiety that the condition getting worse again.

Rough History

My sorry story all started with a virus that struck me down over August Bank Holiday in 2018. I’d spent a boozy weekend with my husband and some friends on our family canal boat so the following week when I started feeling off-colour and like I was rocking I put it down to the weekend’s shenanigans. When I started feeling as if I was in a dream and the sensation of constant motion got worse I ended up in my GP’s office and was diagnosed with Vestibular Neuritis. This fit with my own opinion that had been formed with the help of Dr Google so I was quite happy to go off with a prescription for Stemitil in my hand, to rest up for a few days. I was on a break from work after and wasn’t due to start a new job for 5 weeks so was happy to have an excuse to be lazy for a few days. The next day I became really unwell with aches and a high temperature that sent me to bed where I stayed for the best part of a week. When I did eventually get up the rocking seemed to have improved so I thought I was on the mend. Little did I know that it was all just getting started…
Over the next few weeks I had spells of feeling OK with days of feeling off-balance and unwell. I wasn’t bothered by this as I had understood that VN could take a while to clear up. It was the last weekend of Sept that made me realise that something more serious was going on. I didn’t feel too well on the Saturday but played my hockey match as normal. The day was bright and I felt as if the sun was bothering me. I then went to visit some friends and went out for the evening. I had a few drinks but still felt rough. Waking up the next day I initially thought I was feeling better but by 11am I had had a couple of intense ‘zaps’ of dizziness and started to feel as if I was rocking again. I made my way home and just felt worse. I went to bed and couldn’t sleep as I felt so rough - that’s when the anxiety kicked in. Going through my mind was the thought that I was meant to start a new job in a week and that I wouldn’t be well enough.
The next week I saw my GP and explained my symptoms. Her view was that I was post-viral and that it would clear up. I spoke to my new boss who was really understanding and sympathetic (fortunately) and we agreed to push my start date back by two weeks. Over the next week I got no better. I knew that there was something more going on - I felt as if I was getting worse not better. The next step I took was to see a Vestibular Physio who diagnosed me with VM. I then decided to see a Balance Specialist so paid to see Mr Banerjee in Leicester who is a leading Neuro-Otologist and ENT Surgeon. He agreed with the diagnosis, suggested I start Propanolol, follow the migraine diet and rest up until it settled. I could come back if it didn’t. Reassured that I would quickly get on the mend, I pushed my work start date back another couple of weeks and then went about the business of doing nothing. By the end of the month I felt better, still not 100% but I decided to start work and that hopefully it would just get better.
It didn’t. I got progressively worse over the next 6 weeks, descending deeper and deeper into a permanent state of migraine. I went back to the doc at the end of the year and he arranged tests. In Jan I was still struggling on a work (driving at least 3 hours a day) but felt utterly dreadful. I had an MRI scan and a full suite of balance tests that showed that neither of my ears were functioning very well but that there was a particular deficit in my left that had been caused by the virus I had. The postural tests revealed that I’d become visually dependent. My doc’s theory is that this was over-loading my brain and causing migraine.
He gave me some VRT exercises and said to start them straight away and then start on 20mg of Amitriptyline a week later. I had stopped the Propanolol some time before as it just didn’t help and dropped my heart rate and blood pressure very low. I was excited to have a proper diagnosis and plan. I meticulously did my exercises but unfortunately they triggered my migraine to the point where I had no choice but to go to bed. I made the decision at this point to stop working. My employer was understanding and kind but terminated my role as I could not confirm when I would be able to return to work. It was the right thing but difficult to accept as I have a senior career and it was a big part of my identity.
So basically I have been getting better since. It’s looked like this:
Feb: Mostly in bed or resting. Bloody miserable but could feel progress.
Mar: Took Ami from 20mg to 30mg. Made my heart beat awareness unbearable. Went back to 20mg and added in 120mg of Verapamil in consultation with my Doc. This was a game changer. Was functioning well by the end of the month.
April: Really steady progress, spending most days active in my garden
May: Started doing a lot more - was back to the gym by the end of the month.
June: Mid month my balance went wrong again. I think due to reducing Ami to 10mg, doing too much and a stressful situation with a friend. Started VRT with the support of a therapist.
July: Added in Venlafaxine. Started at 37.5mg and went up to 75mg a week later. It gave me morning anxiety but this faded after about 4 weeks.
Aug: Steady progress - went on hols to Cornwall at the end of the month and was having periods of feeling 100%.
Sept: Minor setback on coming back from hols. My balance got worse again and I thought my hearing sensitivity had come back but it turned out to be myoclonic jerks in reaction to sound. Went to see GP and worked out it was due to changing Venlaf from 2x37.5mg XR to 75mg XR! I changed back and am back on the right track.

This journey has been two steps forward, one back all along. It’s so frustrating. On the positive side it has made me stop and reevaluate my life which I was living at 100 miles an hour before. I’ve renovated my garden and spent lots of lovely time with my family. It has also brought my husband and I closer. I wish it would go away though!

I think I’m doing pretty well. I won’t start work again until I’m sure I’m well enough. I think I’m in the last 15% of recovery. I have a feeling this bit might be the hardest though. It’s so easy to do too much and set myself back. I’m really not someone who likes sitting around and I’m used to pushing through feeling tired and ill (I used to go to work even when ill and a 55/60 hour week wasn’t unusual). I’m learning my new limits slowly.

I will get to full wellness again!

I’ve found this forum hugely helpful as I’ve travelled on my ‘journey’ so thought I would add mine to the collection. If I can help anyone who has a question about my experience then please let me know.

The experts I have consulted with can be found at the following links:
Mr Anil Banerjee - Neuro-Otologist and ENT Surgeon based in Leicester:
http://www.balancedoctor.co.uk/pages/1028/intermittent-dizziness-imbalance-with-or-without-headache-vertiginous-migraine

A VRT specialist I found based in Wolverhampton:

The VRT therapist I am working with in Milton Keynes, near where I live:
https://dizzyears.co.uk

I would recommend all the above individuals - they all really know their stuff. If it has been suggested you do VRT I would recommend working with a therapist. I tried doing it alone with the exercises my Consultant gave me and it was just too much. The VRT I am doing now is very gradual and my therapist is on hand to support through the ups and downs. I am fortunate that I can afford to pay for this - It’s very difficult to get on the NHS.

7 Likes

Welcome the forum Lindsay and thanks for taking the time to post this and following the format.

Sorry you are suffering but I wish you well with your recovery. You can do it!!!

3 Likes

Hi, and welcome. Well, you’ve certainly covered a lot of ground with MAV in a very short period of time which I’m sure will have speeded your improvement. I also sure being able to opt out out of work and thus reduce exposure to triggers helped considerably too. Pleased to read you are doing so well. I feel you are most probably right that the last lap - the last 15% as you refer to it - will probably prove the hardest for you.

One question if I may. It was good to read you found a neuro-otologist (rare as hens teeth outside the South East in UK) in Leicester. Am I correct in assuming your reference to ‘doc’ which occur subsequently in your piece refer to Dr Banerjee and not your own GP who is actually referred to as such? I’m way out West so ask on behalf of others up North who may be struggling to find a consultant who understands MAV to avoid long expensive and most probably overnight journeys South. Helen

1 Like

Hi Helen - thanks for your welcome and comments.

Yes - the ‘Doc’ I refer to is Mr Banerjee. He is based in Leicester, I found him via his website:
http://www.balancedoctor.co.uk/pages/1028/intermittent-dizziness-imbalance-with-or-without-headache-vertiginous-migraine
He works in the NHS and out of private hospitals and clinics in Leicester - he also runs a clinic in London once a month.
He costs £250 for the initial consultation and then £150 thereafter. He runs several private clinics a week so is very easy to see when you need to - I have always been able to get an appointment quickly. He works with all the usual private insurers.

Best wishes

Lindsay

Thanks for your welcome and kind comments! Much appreciated.

1 Like

Thanks for clarifying. From his link he seems to know his stuff. All the valid points covered in very precise piece of text. Like that. It’s so good to know there are a few outside the Big City and Environs. Apart from the inequality of it all in distribution terms with vestibular conditions motion sickness can be a restricting factor with travelling. I‘ve a feeling I’ve heard the name before. You were lucky to find him. He’ll be useful to know about though. People often ask.

One further question. You back on the canal boat or still avoiding it? Have you had to keep away throughout? It’s obviously a trigger. Helen

I actually don’t think the Canal Boat was the trigger - I think it was a coincidence - I had been off the boat a couple of days before I started rocking. I’m pretty sure it was the virus I had that triggered the whole thing. However I’m not certain of that enough to venture back on the boat! I’m hoping to get back on the canal at some point as it’s such good fun. I’d have to be VERY confident of my balance and recovery before I did that though!!

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Oh no I doubt it was the trigger. Just a trigger. Triggers tend be cumulative and reactions also tend to be delayed. Mine nearly always are delayed by 36-72 hours. Viruses do often seem to be a trigger for MAV, along with, for many women, age.

I’ve always found Motion Intolerance to be very indicative of hypersensitivity. I was incredibly motion sick as a youngster when my sick headaches were quite commonplace. They stopped as soon as I hit menarche as did the car sickness. Other forms of travel of more irregular nature occurred on occasions but I never had any trouble crossing The English Channel by ferry several times in very rough seas later in life and even spent time on boats off West Wales in a Force 7 a couple of times without effect. The increased sensitivity returned with the MAV at menopause. I do however remember being very motion sick a couple of times on a canal barge! The barge owner was astonished saying nobody ever gets sick on barges, they go so slowly however I remember a lot of vibration and it wasn’t the engine because that was a horse! I’ve always since declined. I never expect to get that confident again. It’s a very strange sensation a barge. I wouldn’t risk any boats now at all. Helen

1 Like