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Hannah O'Bs Diary

Contents

Summary
Symptoms Summary
Rough History
Start of Journal

Summary

First acute balance issues: Sept 2020
Number & duration of acute phase(s): 24/7 since then
Any suspicious physical event/trauma leading up to dizziness: Had a bout of what I assumed was sinusitis (although my nose was never blocked - just my ears) that improved slightly but basically never went away.
Start of chronic phase: Sept 2020
Age at chronic onset: 56
Started medication:
Stopped medication:
Number & type of consultants seen to date: Eye hospital ophthalmologist re visual disturbance (eye exam fine except small recent haemorrhage), ENT consultant and lastly Neurology consultant.
Diagnoses received (one I’m “running with” first): Persistent Vertiginous Migraine
Medications used successfully for MAV: Awaiting amitriptyline prescription from GP
Failed medications for MAV:
Non-pharmalogical treatment tried which helped: Not sure this counts but I have bought a (folding) hiking pole which is a godsend for negotiating kerbs when crossing the road. Also for uneven surfaces.
Non-pharmalogical treatment tried which didn’t seem to help :
Dietary triggers identified: None
Any hearing loss in either ear: Slight in both plus difficulty identifying background noises.
Persistent or intermittent tinnitus and character: Have a loud humming in both ears but only really notice it when there’s no other sounds.
Other chronic conditions I’m suffering from: suffered anxiety and depression after major family event. Low thyroxine levels.
Medication I’m taking for other conditions: Fluoxetine Levothyroxine
Any personal history of migraines: I remember having headaches as a child which my granny called “sick headaches”. Brief period of ‘proper’ migraines in late teens/early twenties. Had an episode of neuralgia on the top of my head (prescribed gabapentin) Lasted a couple of weeks. My Neurologist says this was actually a migraine.
Any family history of migraines: I think my dad had them when he was younger. My daughter has had them (?hormone related). My mother had trigeminal neuralgia.
Any history of ear problems: I always remember having ear ache as a child. Had peritonsillar abscesses as a teen with associated sore ears. Had tonsillectomy. Had acute labyrinthitis in my late 20s.
How did friends, family, and doctors react to your symptoms?: All very supportive.

Symptom summary

(Your current state)

What’s Gone: (what symptoms you had but no longer get) All still happening.
What’s Ongoing: (what symptoms you still get) Earache, headache, head pains (all mostly on the right side), nausea, dizziness particularly when moving head, unsteady, fatigue, brain fog, eyeballs feel like they’re dancing about.
My Worse Day Now: (description of the worst day you get now) When I have all the symptoms at the same time.

Rough History

Update - Diagnosed Jan 2021 with Persistent Vertiginous Migraine by the excellent Oxford neurologist Dr Lennox. Migraine is one of his specialties.
Hello! I may well not have Vestibular Migraine but I am here to describe my situation in the hope you lovely people will be able to give opinions on whether you think I might have, or possible alternative diagnoses. Apologies of I’ve missed something really obvious.
I had what I assumed was sinusitis - nose clear but right ear blocked, earache and upper teeth tingling on right particularly; pains in right side of head); feeling dizzy and nauseous (lost 1/2 stone - the only upside!); and my thinking is not at all what it was (brain fog??) After 3 wks GP recommended Beconase. Another 3 weeks I still had the dizziness, nausea and head pains. Also getting occasional vision blurring when scrolling on my phone. Visit to GP and standing on one leg with eyes closed showed I had balance problems.
So I’m waiting now for another month or so at which point my GP hopefully will refer me to ENT. I have these symptoms 24/7 with some let up in the evening. I’ve had blood tests to exclude infections, hormonal problems, Covid-19 antibodies etc and have no signs of cerebellar problems.
Thank you in advance :slight_smile:

Start of Journal

I had probably my worst day on Monday - had all my symptoms at once and just needed to lie still and I slept a lot. Ended the day with a dreadful headache which stopped me sleeping for a while. Then woke up on Tuesday and had my best day to the point that apart from slight dizziness I actually felt properly well - amazing after about 3 months - and got all excited about what I was going to do today! Sadly I’m not so good this morning but the main reason I’m posting is that I had the weirdest dreams. I’ve had very vivid dreams in the past but these were like hallucinations - like I imagine tripping on LSD to be (at 56yrs old I’ve never ‘tripped’ on anything apart from uneven surfaces!!) Just wondered if this is a feature of MAV (not that I’ve got a diagnosis) or if I just had a weird night, please?!

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Thx for that. You made me burst out laughing. I could have written much the same.

Symptoms vary immensely, day to day, hour by hour even. MAVs a rollercoaster of a ride and it’s goes on and on.

Interesting your vivid dreams. You will find a lot of references if you use Search facility however I think it’s nearly always people on medication and we all, me included, blame the meds. Indeed vivid dreams are often listed as a side effect for many of the preventatives. Can’t be your cause though. As far as I am aware dreams aren’t a known MAV symptom. I always think they can be a strong indication of our current subconscious mental state. If that doesn’t seem to fit maybe just due to your interrupted nights sleep but that’s just my guess.

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Thank you. Glad I made you smile! My son says that you can tell I’ve never taken LSD as the dream I described to him didn’t sound like LSD: according to him, you don’t get hallucinations like that with LSD… I must point out that my son is a tremendous garner of obscure knowledge and not a drug taker… :innocent: He watches podcasts and films on double speed so takes in a lot of information :crazy_face:

Are you taking any meds at the moment ? I have awful trippy halucinating dreams and wake up exhausted and astounded my brain can think of such stuff although Im blaming it on the nicotine gum im self medicating on at the moment rather than the MAV.

Rather worryingly, I’m not taking any meds (apart from Beconase spray!) so can’t blame it on the meds. Maybe I need to review my life… :laughing:

Sorry for the frequent rambling posts but if I can post here, it stops me boring the pants off my family who are sympathetic but, understandably have no more knowledge of the situation than me!
So…
Monday: was my worst day so far. Ended with a horrendous banging headache.
Tuesday: was one of my better days.
Wednesday: actually felt properly well for first time in 3 months. Aware of slight dizziness/vertigo but my ear, head, eye, brain fog and general yuk had gone. So exciting!! Made me realise that I have been/am ill and not just malingering. (I don’t vomit or fall over so not much to see :laughing:)
Thursday (today) back pretty much to square one.
Any ideas how/why one can go from the absolute depths one day to being so much better in less than 24 hours, please? I hadn’t eaten or done anything different to usual :thinking:

@Bemahan, Hannah, for personal progress posts like these, you should use a #personal-diaries Topic, not #symptoms . I’ve set your diary Topic up for you. You can Edit the first post as your summary. New entries should be posts in this Topic.

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Sadly no-one knows for sure, but suspect once you breach some neuro-physiological limit (I can tell you in more detail what I believe that is, but there’s not much point in relying just on my educated opinion until it is definitive science), you start to get significant symptoms. This can happen with or without any kind of trigger. It can then die down again, only to happen again a while later.

Just follow the doctor’s advice once you get diagnosed and stick with the proposed regime.

I would get referred asap, because at this rate you are going to find this extremely disruptive and upsetting. I believe you need to seek specialist help right now so you can begin to get on top of it, rather than letting it get on top of you.

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@turnitaround Thank you for setting up the diary for me. My GP texted me last Friday to say he’d refer me to ENT so I’m just waiting to hear from.them now.

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Done it myself many many times. In fact still doing it. I had a perfect day last Thursday but it’s been varying degrees of rubbish ever since. Since migraine dx I have always been looking for obvious triggers, foods, lights etc and not always finding them. For the female of the species hormones seem to play a huge role. Most probably fluctuating hormones at various momentous times of life. Unlike obvious triggers we cannot see those hormones. Recently I reread a paper @turnitaround posted on here relating to the role hormones play in what happens in our ears and I am now thinking that’s part of my own jigsaw. And maybe yours and others too. It seemed to make sense. Cannot really go into more detail or link at present because my MAV is currently raging (Day 4) and concentration is at a premium.

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GP suggested I have an eye test so I spent 2 hours at the ophthalmologist’s today having everything checked and measured. He was so thorough and got a colleague in at one point to double-check something (seems I have one pupil slightly bigger than the other but not an issue).
Upshot is my eyes are fine and there’s no sign of a tumour or any other issues. I wasn’t expecting them to find anything, but just wanted to tick the “seen ophthalmologist” box.
Exhausting though. It’ll be interesting to see if I suffer any ill-effects tomorrow.

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Okay, I’m fed up with this now. Neither use nor ornament, particularly as I stopped driving a few weeks ago as a result of not feeling my reactions are as sharp as usual. Feeling very whirly-headed this week. A different (but not new) symptom seems to come to the fore every few days. My ENT referral was made on 27/11 but no appt or booking request yet. GP says if I don’t hear by next Tues then they’ll check.

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I was lucky to live in London when mine was at its worse so not driving was pretty easy due to the excellent public transport options. (Though of course even those were hugely unpleasant when very symptomatic.)

I feel for you if that’s not the case.

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I’m in Oxford. I’m lucky that I have the time to spend walking to places. It’s mainly driving other people (children who don’t yet drive, and my 86yr old mum) and being independent/useful. In the main taking my 18yo to work at 6.45am at a residential school for kids with autism. It would be a very very long walk or a two buses, and a tiring and even earlier start to a long and demanding shift. Also taking my mum out and about for appts etc. Means all the pressure is on my husband who is up to his eyes working from home with covid-related work. Public transport in Oxford is not good - you have to go into the city centre and out again unless your journey coincides with the between-hospitals bus service.

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Ah, Oxford. In that case you should have been referred to the Ratcliffe Hospital? Yes? Now I know a lady who sees a female neurologist there who is interested in MAV and very pleasant and easy to get on with being open minded. I will ask her to PM you with details. You can request a specific specialist even on the NHS.

Thank you! That would be brilliant! I’ve also been meaning to ask that if the ENT person I see doesn’t know what the matter is, is it etiquette to tentatively ask about migraine? Don’t want to tread on any potentially egotistical toes.

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You certainly got their measure then. I will bypass the question by saying I just tread on toes and be damned. Do you know why you were referred to ENT? I ask only because I must have seen at least five different ENTs and an audiologist trained in VRT none of them had any clue what was wrong with me. If fact when I mentioned head pressure to one ENT consultant and I only did mention it to one, I was told quite sharply that head pain was nothing to do with it. I was there because of extended vestibular attacks. I know people here have had ENTs pick up on MAV but all the collection I saw saw was ears. Took a neurologist about five minutes to give me a dx after a 12 year wait.

I hadn’t heard of MAV when I was in touch with the GP so hadn’t raised it and, tbh, I didn’t mention the headaches much as I thought they were a side effect of the ears/vestibular problem (might still be) so the GP felt ENT was most appropriate. I have a feeling they would start with ENT anyway. So if I don’t feel I’m getting anywhere with ENT, I’ll get back to my GP sooner rather than later to ask for a neuro referral.
[I’ve been caught between two specialties before (Gynae and Urology) with my teen daughter. Uro thought it was nonsense that she’d been passed to them but, luckily, did a CT so they could rule themselves out, only to find she had a kidney stone, lol.]
Also, with my mum and her trigeminal neuralgia - fell through a gap between neuro and max/facs but they pulled out all the stops when they realised and held a special clinic just for her with both consultants.

My ENT referral was made 2 weeks ago but having heard nothing (not even the usual invitation to book letter) I chased it today.
TLDR: no referral received by ENT. GP reception “investigating”.
So not a good day. Added to which there are difficult on-going family situations which don’t help :frowning:
After phone calls (not easy with my current head/brain) to GP reception (most unhelpful “well it’s been done”), nice local booking service (no trace of referral) and put me through to nice ENT booking chap who confirmed no trace of a referral via any route for me and had no option but to refer me back to GP reception. They’ve said they’ll put it on the list for the secretaries to deal with.

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