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John's Diary

Contents

Summary

Symptoms Summary
Rough History
Start of Journal

Summary

First acute balance issues:
May 2018
Number & duration of acute phase(s):
One.
Any suspicious physical event/trauma leading up to dizziness:
No trauma. Very heavy and prolonged head cold a few weeks earlier.
Start of chronic phase:
May 2018
Age at chronic onset:
68
Started medication
Prochlorperazine May-August 2018. Betahistine wef August 2018
Stopped medication:
Ongoing
Number & type of consultants seen to date:
2 x otolaryngologists
1 x unidentified

Diagnoses received (one I’m “running with” first):
Incomplete compensation following acute labyrinthitis.
BPPV
Middle ear infection
Non-pharmalogical treatment tried which helped:
VRT in the form of Cawthorne-Cooksey exercises and gaze stabilisation exercises
Swimming
Non-pharmalogical treatment tried which didn’t seem to help :slight_smile:
Brandt-Daroff exercises. Replaced with Cawthorne-Cooksey August 2019
Dietary triggers identified:
Not really sure but caffeine may be a contributor so cut it out in July 2020
Any hearing loss in either ear:
Both ears courtesy of Her Majesty’s Armed Forces
Persistent or intermittent tinnitus and character:
Right ear as above. Constant high pitched “electronic” type sound
Left ear started December 2009 (?). Varies from light wind blowing to roaring fire. Consultant’s diagnosis? Tinnitus!! :slightly_smiling_face:
Other chronic conditions I’m suffering from:
Reflux
Medication I’m taking for other conditions:
Omeprozole
Any personal history of migraines:
Occasional migraine during teens. Last known attack circa 1971.
Any family history of migraines:
None
Any history of ear problems:
Substantial bilateral hearing loss
How did friends, family, and doctors react to your symptoms?:
Wife is very supportive.

Symptom summary

(Your current state)

What’s Gone: (what symptoms you had but no longer get)
No true vertigo since early 2019. Not much nausea. Betahistine seems to help.
What’s Ongoing: (what symptoms you still get)
Overall condition is no better and no worse than it was in August 2019 when I started Cawthorne-Cooksey and swimming. Specifically:
Varying degrees of dizziness
Tinnitus (pre-existing condition)
Tiredness
Brain fog/ mental confusion
Difficulty in concentrating
Generally feeling unwell
Light sensitivity usually brought on by fluorescent lighting
Noise sensitivity when exposed to extremely noisy environments eg. crowds in a theatre
Supermarket/ tall building syndrome

My Worse Day Now:
Visiting a supermarket or garden centre. Dizziness and tiredness start pretty much right away followed by confusion and irritability. Extreme tiredness follows. Generally takes a few days to recover from a single visit.

Rough History

  • It all began when I awoke early one morning in May 2018 to find the room spinning violently.
  • The first thing I did was to go back to sleep thinking it would be better in the morning. It wasn’t. Slightly reduced symptoms persisted for several days so I went to see a doctor. Initial diagnosis was a middle ear infection and Prochlorperazine was prescribed.
  • August 2018. The Prochlorperazine may have caused visual disturbances so I was switched to Betahistine. Changed GP at this time.
  • October 2018 little change in symptoms so I was referred to a consultant who diagnosed BPPV or an acoustic neuroma and sent me for a scan. Brandt-Daroff exercises recommended.
  • March 2019. Scan results (“unremarkable”) presented to me by a new doctor who spent a long time talking about the accuracy of the scanning process eventually confirming the diagnosis (had to ask for it) as BPPV. Hardly any examination, however. Doctor unable to answer questions satisfactorily.
  • August 2019. Still dizzy. Given unsatisfactory nature of last consultation I went to see an otolaryngologist privately. Thorough discussion of history followed by loads of tests including Dix-Hallpike. Conclusion: not BPPV but incomplete compensation following acute labyrinthitis/ neuronitis. Cawthorne-Cooksey exercises recommended in place of Brandt-Daroff
  • September 2019. Put back into NHS system. Sent for extensive vestibular system tests at local hospital. Result: strong vestibular response. No nerve damage. Light/ noise sensitivity mentioned for the first time. I hadn’t previously identified this as a symptom. It was only over the course of the next days, weeks and months that I realised that strong lighting, especially fluorescent, had actually been a factor in the reaction I got in supermarkets etc.

Start of Journal

  • November 2020. Noticed that instructions for gaze stabilisation exercises suggest that they may have limited benefit if undertaken whilst on medication. Similar comments in BMJ article 2017.Spoke to consultant who proposed reducing Betahistine to 2 tablets/ day for a month then reducing to 1.
  • December 2020. Been on reduced dose for 3 weeks. No beneficial impact on dizziness noticed but tinnitus is almost unbearable.
4 Likes

Glad to hear that!

Thanks for creating a detailed diary Topic.

That’s a bit odd because neither of these issues can be picked on a scan afaia, the level of detail is simply not up to it.

(Have not seen a single science article documenting that)

However the mere existence of PLF is highly controversial and there are other explanations for the same symptoms (secondary endolymphatic hydrops, VM to name a couple)

Correction: acoustic neuroma

2 Likes

But that was eliminated by MRI Scan? I understand it would be visible. Just looked it up on the internet. Interested to find neuroma can be result of noisy work environment so would certainly seem an educated suggestion possibility by your specialist. At least nobody tried to pass you off as ‘disequilibrium of the elderly’. That would have been an insult.

Bit of a disappointing incomplete dx, BPPV from a specialist. Not saying it doesn’t happen but your symptoms sure don’t sound like BPPV to me. I am no medic but say this for two reasons. I have read many times in various medical papers etc if BPPV lasts more than a few seconds, it isn’t BPPV. And secondly I can’t see how BPPV would give you photophobia or Supermarket Syndrome. It’s very much something that comes and goes. Apart from anything else it’s purely Positional. I was misdiagnosed with BPPV for many years because mine initially appeared as classic BPPV. VM can on occasion mimic BPPV.

Great you were prepared to write up a detailed diary. I find your case fascinating. First male I have ‘met’ who seems to share my symptom pattern (early onset headaches, large gap then return in later life as vertigo/imbalance, which up to now I guess I have been assumed to be attributed purely to women and controlled by hormones.

Thanks for your interesting comments. The history gets a bit complicated and I really must get around to finishing it off so you can see the complete picture!! Rather than give a full explanation in this reply I’ll add to it later on.

Nevertheless, you’ve raised some interesting points especially about the duration of BPPV “attacks” if I can call them that. As I will relate later on in my history (which I’m trying to keep short), I saw two doctors the second of whom confirmed the first doctor’s BPPV diagnosis without any kind of examination or asking me about my history. Presumably he just read the notes his colleague had made and went with that. I later found out that this second doctor was not a specialist of any kind. Quite why I was sent to see him, I have no idea. I could say a great deal about the organisation he worked for but my language might breach forum rules and I wouldn’t want to expose mVertigo to any kind of litigation!! And in any case, I still get worked up about the whole experience of working with the company in question whenever I think about it so I try not to.

Re the symptom pattern, yes, it’s interesting. I had assumed that the initial labyrinthitis created or awakened some sort of weakness in whatever brain I’ve got left (just had another birthday) which has led to the light/ noise sensitivity and which in some way relates to the migraine I suffered as a teenager. Fortunately, I don’t get migraine type headaches any more, touch wood. No doubt there are more like us out there somewhere whose migraine manifests again in later life.

Now I really must get that history section finished off!!

2 Likes

I struggle to respect BPPV as a plausible diagnosis. Your otoconia are kept in a tissue matrix. I would love to know how they are mean to get loose? If any material were to loosen in your inner ear they are apparently in any case absorbed by the walls of the labyrinth after some time. I don’t think anyone has imaged BPPV in vivo to prove the dogma. It’s as much a story handed down by successive medics as anything else. It has some plausible logic, but I don’t think it holds up to serious intellectual scrutiny?

We basically don’t know what the heck is going on imho. Clinical imagery is generally very low resolution and as a snapshot isn’t particularly useful to monitor a condition that fluctuates significantly.

Basically the current state of vestibular medicine is pretty disappointing!

The answer is to push some pills to control migraines and dizziness, without anyone knowing really how to address root causes or what those root causes are.

But all is not lost, of course, because we didn’t evolve for millions of years without our bodies learning how to defend themselves. I suspect a lot of these issues can be chronic but can also resolve spontaneously if given enough time.

Nonetheless, controlling migraine and anxiety is really important to prevent even more trouble, so definitely follow your doctors advice.

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Strange thing, this BPPV. I was advised to perform Brandt-Daroff exercises 3 times a day to reposition the otoconia. During the year or so that I religiously performed these exercises I often wondered why the little devils were taking so long to get back into place. Or maybe it was because my otoconia were just stubborn!! Or maybe, and as it turned out, I didn’t have BPPV at all.

Incidentally, and perhaps to illustrate your point about the state of vestibular medicine, my earlier oversight in referring to a perilymph fistula was a bit of a Freudian slip. I had asked one of the doctors I saw if my condition could be a pf as it ticked a lot of the boxes at the time. He said that it wasn’t as he couldn’t see any fluid in my ear. Now, my understanding was that a pf could only be diagnosed by surgery and that any drops of fluid escaping would be microscopic. Of course, he’s the doctor, not me although he did say that I probably knew more about the subject than he did. Self-deprecating or honest?

Something else worth bearing in mind is that research in this area doesn’t appear to be well funded. For understandable reasons all the money seems to go to cancer and heart research. Nothing wrong with that, of course, these terrible diseases are killers. It’s just that one gets the impression that some conditions are at the end of the queue when it comes to dishing out the cash.

Let’s hope you’re right about our bodies resolving these issues by themselves and let’s hope they don’t take too long about it. Unlike my otoconia!!

2 Likes

Leave your poor otoconia alone ;).

And that’s another thing: don’t get me started on the RIDICULOUS idea that violent jerks of the head will perform microscopicly fine adjustments to loose stones!

I guess it might clear a canal but reattach anything?!

I suspect there is another explanation pending on why that sometimes works.

Yeah the doctors can’t do much more than match observed symptoms and telemetry to diagnoses. These are built up over time and some are a mixture of clinical experience and dogma.

I would take the absolute most conservative route to relief for the time being.

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I wonder whether you wondered that as often as I wondered why, if the Epley manoeuvre (which supposedly does similar to Brandt Daroff exercises) persuaded those pesky little otoconias back in wherever they were supposed to be, what’s to stop them all coming out again the very next time you inadvertently replicate the head movement by say looking for the suitcase under the bed?

It certainly does make you wonder, doesn’t it? I’d have thought that if you can shake 'em back you can shake 'em loose again!

Co-incidentally, I had my bi-monthly visit to my chiropractor yesterday. He has quite an interest in balance disorders so I asked him if he thought BPPV actually existed as a condition. He replied that some say it does and some say it doesn’t. I’m not sure where that gets us, though, if anywhere, other than to confirm that attempting to diagnose a vestibular disorder is a minefield and maybe that should shape our expectations and choice of medical practitioner.

2 Likes

I prefer practitioners who are honest enough to admit where there is some doubt around things - you feel like they are treating you like an adult whilst also being honest - doubly reassuring! :slight_smile:

I’d have to say BPPV definitely exists. I know one person personally who has had it for decades. Hers is totally predictable. Totally positional and involved in passing through a certain angle between sitting up and resting her head on a pillow. It would be possible to actually measure the angle. It’s not the existence of the condition I would query, just the idea that errant little calcium crystals cause it and that they can be tempted to move out of harms way by a particular manoeuvre.

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Yeah, there’s no doubt about the symptom/condition, in my view, just the detailed explanation doesn’t make complete sense.

1 Like